So on Wednesday of last week we had our routine visit with our fantastic neurologist, Dr. Joshi. We were actually excited for this appointment because of how well Beau had been doing. After all, it had been since the end of October that he'd had a seizure and his balance and overall brain clarity seemed to be awesome! The doctor, also excited, was cautious and told us that she didn't want to be a downer, but eventually the seizures would break through again. The Depakote was doing it's job though and she figured it might buy us a few months of time. Since his brain has seemed "clearer" (if that makes sense) she figured, as well as we did, that the electrical impulses that were constantly firing in the brain on the last EEG, must be slowing down thanks to the Depakote. After all, wouldn't you be able to think clearer if your brain wasn't firing every second! Because of that, she ordered an overnight EEG to get a comparison to his EEG he had in April of this year. This test is scheduled for Monday and Tuesday of next week in Iowa City. No medication changes were made and she discussed that we still have room to increase the Depakote if needed or there is a drug called Lamictal that she could slowly add if needed. He is already on Kepra, so nothing would change with that.
The discussion was also had about the possibility of brain surgery which she likes to do before the age of 5 on children because of the brain's incredible ability to "re-wire" itself, so to speak. Dr. Joshi explained to us the complexity of Beau's case. A few more drugs would need to be exhausted - proving that they are no help for Beau. The abnormality that she sees on PET scan as well as activity on his EEG, shows that the abnormality is located on the left side of the frontal portion of the brain, near the midline. She has always noted that his right leg is weaker and doesn't work as well as Beau's left leg. This would make sense since the abnormality or damaged area of the brain is on the left side = right sided problems. The complexity happens when, we as parents describe how a majority of Beau's seizures have affected his left side of his body - meaning the trigger came from the right side of the brain. Many of his early seizures in fact would involve the left side, leg and arm, and for at least 2 hours after the seizure, he would be paralyzed on the left side. Because of this, Dr. Joshi is thinking that because the abnormality is so close to the midline, it may be "bouncing" back and forth, resulting in both sides being affected. To properly determine if surgery is an option for Beau, they would have to place EEG electrodes subdural. That involves the horrible process of opening up the brain and placing the electrodes directly on the brain itself - which is much more specific than a regular EEG. It carries it's own risks of course and the whole process makes me want to vomit. Andy and I both just cringed when she spoke about it. If the test determined there was activity bouncing back and forth it wouldn't be worth the risk to do surgery. You certainly can't take out areas on both sides of the brain. At this point in time I chose not to think any more about it - thinking that "we'll cross that bridge when we get there".
As our luck would have it, that very same night (the day of our appointment) Beau suffered a small seizure after falling asleep. This seizure affected the right side of his body and was short - only 25 seconds in length. His evening dose of Depakote was then increased and since then we have been seizure free. Since he's been seizure free, he will still have his overnight EEG next week. He has been very moody though since increasing the dose, so I'm hoping that once his system adjusts, the moodiness will drop.
Time will tell how his body is going to handle the Depakote. I just wish this poor kid could catch a break. I guess we need to be grateful that he had over a month without seizure activity and what an awesome month it was for Beau!
Beau
Our "Beau"tiful Blessing
Friday, December 16, 2011
Thursday, December 1, 2011
What does a cow say?
It seems like a simple question, right? What does a cow say? It seems like a very simple question for a near 4 year old child, but in the world of P-ACC it isn't always so simple.
Some sort of miracle has happened in the last few weeks (knock on wood). Beau, after being removed from one of his anti-seizure drugs (Tegretol) and adding a new one (Depakote) it's as if we have a revitalized little boy. We have been seizure free for a couple weeks and it's as if this new drug is slowing down all of the rapid electrical firings Beau was having in his brain. Again, I hate to even type this for fear we'll be jinxed! Everyone has noticed it; family, teachers, therapists. He isn't so tired all of the time and he no longer takes 3 hour naps in the afternoon. He also no longer struggles to wake up in the morning after 10 hours of sleep. His walking has improved, he's attempting to run more and trying really hard to jump. His teachers notice how much clearer he seems and how it appears as if information is "going in" and he's "getting it". He may even be able to start attending school full days.
A week ago we started to notice that Beau seemed to really be responding to pictures of cows and would really notice them. Not only that, it seemed like he might be saying "moooo" when he saw them. I brushed it off at first thinking that "nah that can't be what he's saying". It quickly became obvious though, that it was EXACTLY what he was saying. Somehow, after years of us making animal sounds and teachers making animal sounds, something just "clicked" and now Beau officially knows what a cow says and can say it.
This proud mama is proud of her "mooing" son. It has been mooosic to our ears!
Some sort of miracle has happened in the last few weeks (knock on wood). Beau, after being removed from one of his anti-seizure drugs (Tegretol) and adding a new one (Depakote) it's as if we have a revitalized little boy. We have been seizure free for a couple weeks and it's as if this new drug is slowing down all of the rapid electrical firings Beau was having in his brain. Again, I hate to even type this for fear we'll be jinxed! Everyone has noticed it; family, teachers, therapists. He isn't so tired all of the time and he no longer takes 3 hour naps in the afternoon. He also no longer struggles to wake up in the morning after 10 hours of sleep. His walking has improved, he's attempting to run more and trying really hard to jump. His teachers notice how much clearer he seems and how it appears as if information is "going in" and he's "getting it". He may even be able to start attending school full days.
A week ago we started to notice that Beau seemed to really be responding to pictures of cows and would really notice them. Not only that, it seemed like he might be saying "moooo" when he saw them. I brushed it off at first thinking that "nah that can't be what he's saying". It quickly became obvious though, that it was EXACTLY what he was saying. Somehow, after years of us making animal sounds and teachers making animal sounds, something just "clicked" and now Beau officially knows what a cow says and can say it.
This proud mama is proud of her "mooing" son. It has been mooosic to our ears!
Friday, November 4, 2011
Halloween 2011
Beau is obsessed with football so it seemed only fitting that he go as a football player this year!
More than going out and collecting candy, Beau loved waiting at the door and handing out candy to everybody else. It was quite cute to watch!
The Diastat works...
Over the past 2 weeks Beau has been going through major medication changes. It's no wonder then that he had a long seizure last Saturday night. It was rough to see another prolonged seizure but we did give him the Diastat for the first time and it did stop the seizure after about 6-7 minutes. Total, the seizure lasted about 12-13 minutes. It was another quiet seizure that began with drool coming out of the corner of Beau's mouth. From there it became full on chewing, drooling and his left leg began jerking. It took so much out of him. He woke up several times throughout the night, clearly having a headache from the seizure. I gave him ibuprofen in the middle of the night and finally he was able to catch a little sleep. Since Saturday though, we are completely off of the Tegretol and are on Keppra and Depakote. So far (knock on wood) the new combination is keeping the seizures under control.
When I spoke with the neurologist I discussed my concerns over the fact that lately his seizures had been affecting his left leg and not his right leg. Knowing that there is a definite abnormality on the left side of the brain, we expect the right side of the body to be affected. It worries me though, that he's having all of these problems with his left side. She isn't certain at this point in time, but believes that it could just be affecting the left leg, like his right leg, because the abnormality is so close to the midline. If that's not the case, and there is an abnormality on the right side of the brain as well, we may not have the option of surgery down the road. Ugh. This is all so confusing and I guess there's no use worrying about what we don't fully know yet. More tests would provide us with those answers. For now, we give time for the Depakote to work it's magic with the Keppra and we hope for no seizures. Our next appointment with the neurologist is December 7th where I think we'll be able to learn a lot more about her plan for Beau. We're a strong family and we can get through anything!
When I spoke with the neurologist I discussed my concerns over the fact that lately his seizures had been affecting his left leg and not his right leg. Knowing that there is a definite abnormality on the left side of the brain, we expect the right side of the body to be affected. It worries me though, that he's having all of these problems with his left side. She isn't certain at this point in time, but believes that it could just be affecting the left leg, like his right leg, because the abnormality is so close to the midline. If that's not the case, and there is an abnormality on the right side of the brain as well, we may not have the option of surgery down the road. Ugh. This is all so confusing and I guess there's no use worrying about what we don't fully know yet. More tests would provide us with those answers. For now, we give time for the Depakote to work it's magic with the Keppra and we hope for no seizures. Our next appointment with the neurologist is December 7th where I think we'll be able to learn a lot more about her plan for Beau. We're a strong family and we can get through anything!
Tuesday, October 25, 2011
Will they ever stop?
The seizures continue to strike! They are hitting EVERY time Beau sleeps. Over the last week they have only affected his left side during the seizure. We seem to go in spurts of right leg one week then left leg next week. His left leg is his stronger leg, but now it is just as weak as the right leg because of the daily seizures. When he walks it's very cautious and stiff looking. It's breaking our heart to see this. The one drug, carbamazepine was increased a lot lately but it clearly has no effect on the seizures. Today started our first day on depakote. For right now he is on keppra, depakote, and carbamazepine. He was weaned off of the dilantin because he was on such a low dose and the neurologist didn't feel it was effective. As of right now, I'm not sure when or if they will completely take him off of the carbamazepine. I just have my instructions for this week. It shows a decrease in the carbamazepine but not a complete removal of it yet. I hope, for Beau's sake we can figure this out. It's so hard to see what the drugs and the seizures do to his little body and yet somehow, through it all, he squeels and smiles. I pray that one day - and hopefully one day soon - Mr. Beau gets some relief. I know God takes good care of him so I just have to put my faith in that and in our neurologist.
Friday, October 21, 2011
School for Sale - Be an advocate!
I wanted to talk about is being the best advocate you can be for your child. This has been a role that I have stepped into quite easily. I guess I come off like a mama bear when it comes Beau and what is in his best interest as a special needs child. I have attached a link (please click on School for Sale) to a news story that I was a part of (I contacted the media) with regard to a situation happening here in Waterloo and the school that Beau attends. The actual building is owned by the Waterloo School District but it is leased by the AEA 267. It's quite long and difficult to explain it all but you can get the general idea by listening to the news story. Let's just say they haven't heard the last of me. It aired last night and I have received numerous phone calls today of people in support of my efforts and one from a director with the Waterloo School District. It tells me Waterloo School District saw it - that makes my day :) Never be afraid to stand up, be heard and advocate!
School for Sale
School for Sale
Even more seizures.....
Beau continues to have seizures every time he sleeps. It hardly seems fair for him. We are going through a process of increasing the dose of one of his medications, the carbamazepine, but it still isn't doing the trick. After a call to his neurologist today, I'm pretty sure we will be trying a new drug starting next week. There has to be something that will give Mr. Beau better control. We shall see what the weekend brings for him - more of the same I'm afraid.
No matter what - this handsome little boy smiles through it all. God I love him!!
Tuesday, October 18, 2011
More seizures....
So after another big up in Beau's medication about 2 weeks ago, he has had more seizures. He had a seizure this past Friday night which lasted about one minute and involved his left leg. Last night he had 2 seizures. The first one involved just his right hand and it lasted about 3 minutes. He had a 4 minute break and then the 2nd seizure started and this one involved his left leg. It only lasted about 1 1/2 minutes. It's amazing to me how he is on so much medication and such high doses and it doesn't keep the seizures under control. It's hard to understand why all of the sudden these past couple months his body just isn't responding to the drugs. He went for a good long time without seizure activity and now it seems never ending. The process of drug adjustments and changes seems to be so tedious - as it should be - but it's so hard because as a parent you want to "fix" the problem immediately! I have put my full faith in our neurologist and pray that she finds the right "fix" for Beau Beau.
Friday, October 14, 2011
The boy loves football....
This last Saturday we were invited to attend the UNI homecoming football game in Cedar Falls. My brother had extra tickets and was kind enough to invite our family to attend the game. We have known for some time now that Beau is quite fond of football but we never knew how he'd do watching a live game as opposed to just watching one on TV. We weren't sure if the noise in the dome would scare him or if he'd do OK. We never should've worried because as you can tell, this little boy was in heaven..........
If this doesn't show pure joy and excitement, I'm not sure what does! We now have a true Panther fan on our hands. A few days after the game he even spotted the Panther logo in a newspaper ad and went nuts signing football - he had totally remembered the logo and made the connection. Just another reminder to me how much is going on in his brain!
All in all, Beau had a great time at the game and when we came home he wanted to play ball like crazy! Unfortunately his night ended with a seizure during sleep. It lasted 5 minutes and ended on it's own, so we didn't have to give him a rescue drug. I guess he'd had so much excitement and fun his brain couldn't slow down. Even still, we'll be taking him to another game in November. He deserves to have fun and love all great things that life has to offer. Go Panthers!!
All in all, Beau had a great time at the game and when we came home he wanted to play ball like crazy! Unfortunately his night ended with a seizure during sleep. It lasted 5 minutes and ended on it's own, so we didn't have to give him a rescue drug. I guess he'd had so much excitement and fun his brain couldn't slow down. Even still, we'll be taking him to another game in November. He deserves to have fun and love all great things that life has to offer. Go Panthers!!
Friday, October 7, 2011
Halloween Memories
Since October 31st is fast approaching, I was feeling very reminiscent about some of the great Halloween memories we have had with Beau. I'm quite partial, but I think he's a pretty cute little boy and I wanted share some pictures of our little man from the past 3 years.
Pictures bring back such great memories! This year he has two costumes. I think he will be Superman at school and a football player at home. After all, Beau is quite the Superman to go through all he's been through and come out so strong. And he is obsessed with football so the football player seems like an obvious choice! Looking forward to some great pictures this Halloween and some even better memories.
Here's Beau in 2008 as a monkey!
Here's Beau in 2009 as Yoda!
Here's Beau in 2010 as Batman!
Wednesday, October 5, 2011
A strange event...
Last evening something strange happened with Beau. Shortly before we sat down to eat supper, Beau was playing in the living room just off the kitchen while I was making supper. Andy and I were there and Beau had been playing great and walking around following Andy. All the sudden it was like someone had flipped a switch. Beau started to whimper and then he fell down. It quickly became apparent that he didn't have the use/feeling of his right leg. We'd stand him up and immediately catch him as his right leg wouldn't support him at all. We laid him down and Andy tried to manipulate both legs trying to get Beau to lift them up and kick at Andy's hands. Beau easily lifted his left leg up high and pushed back on Andy's hand. He couldn't get his right leg to raise even a quarter of the distance his left leg did and you could tell he didn't know what it was doing. He was quite scared - as anyone would be when they suddenly lose function of a limb. To avoid scaring him anymore, we set him in his chair for dinner. He ate pretty well but still whimpered periodically throughout the meal. Beau isn't a cranky kid so we knew something wasn't right. After dinner I held him and took him back into the living room to play with him and his toys. He has a table he likes to play at and normally he will walk around it. He crawled around the table being very cautious. I got him to stand up to look out the window and he pulled himself up and his right leg stayed out to the side and behind him. It was holding him better but still not moving like it should. Over the next ten minutes it seemed that the function slowly came back and eventually it was as if the event had never occurred. The whole event from start to finish lasted about 40 minutes.
I left a message this morning for our neurologist. The event itself was scary but it really doesn't surprise me since we know that there is an abnormality in the brain near the right leg. In fact, knowing that piece of information is what kept me calm and didn't completely freak us out. It's worrisome though that this is happening because I don't believe that this has ever happened to Beau before. The brain is such an amazing machine and every day I learn more and more about how much control it has.
Beau didn't sleep well last night either. He tossed and turned for the first couple hours of sleep and we finally got to sleep around 12:30. He seemed to have a few leg movements but they all seemed benign. He whimpered quite a bit like he couldn't get comfortable. It's moments like these that make me wish so terribly that Beau could talk and could tell me what hurts or what he is experiencing.
I left a message this morning for our neurologist. The event itself was scary but it really doesn't surprise me since we know that there is an abnormality in the brain near the right leg. In fact, knowing that piece of information is what kept me calm and didn't completely freak us out. It's worrisome though that this is happening because I don't believe that this has ever happened to Beau before. The brain is such an amazing machine and every day I learn more and more about how much control it has.
Beau didn't sleep well last night either. He tossed and turned for the first couple hours of sleep and we finally got to sleep around 12:30. He seemed to have a few leg movements but they all seemed benign. He whimpered quite a bit like he couldn't get comfortable. It's moments like these that make me wish so terribly that Beau could talk and could tell me what hurts or what he is experiencing.
Thursday, September 29, 2011
PET Scan is done and the results are in.....
So I've gone back and forth over the last month since the first discussion with our neurologist about the possibility of Beau having an additional congenital brain abnormality known as cortical dysplasia. The doctor, not having seen it on Beau's early MRI had ordered another one but even still had told us, it most likely wouldn't show up on MRI and that we would have to have a PET scan. Of course if you're reading this, you've most likely read our post earlier this month about the MRI and how it didn't show cortical dysplasia. We were prepared that it might not show up on MRI so it wasn't a huge let down, but it still made us want the answer that much quicker.
Fast forward to Wednesday (2 days ago).......We took Beau to Iowa City for his PET scan and were fortunate enough to get the best sedation team nurse, Roger, once again. I feel like he's becoming part of our family. I guess in some ways he really is - he's a part of our hospital family. After a stressful time for Beau of getting his IV put in, in the Pediatric Specialty Clinic, they sent us downstairs to the PET scan department. Roger met us down there and explained to us that he would be administering 3 different drugs to Beau - different drugs than were used for the MRI because this test would be longer and required that he not wake up and move at all during it.
The first drug, Versed, was administered. This is a drug that for a long time, we actually used as a rescue drug during a seizure. This is commonly used among anesthesia as it helps to calm a person. It calmed Beau and next came the Propofol - or as many people now know it - the drug that killed Michael Jackson. Roger had warned us that when the drug is administered people can become excited and their limbs can kick and flail. I was holding Beau during this and his body did just that, but the movements became very erratic and his eyes rolled back into his head and his legs tightened up. Roger recognized it as a seizure right away and grabbed him out of my arms. A doctor and a PET scan nurse were in the room as well and all jumped into action. The seizure was short lived, only about 20-25 seconds. I was shaking badly and Andy and I just stared at each other. It wasn't exactly the way we had thought the day would start for Beau. The seizure changed the way that they would read their test, but they said that they could still do the scan. After Beau was out from the sedation, they started administering the radiotracers. That process took about 45 minutes for it to get into his body. After that was completed, they took him in for his test which took about 30 minutes to do. After a short time in the recovery room, they drew some labs and we were free to go home.
Yesterday I got the phone call from our neurologist. She started off talking about the most recent blood level of Tegretol. It was low once again. It seems that Beau's body just doesn't seem to be phased by some of these drugs. Because he has had some different types of small seizures over the last month and because he had a seizure right there in the hospital, she increased his Tegretol once again. Three times in the last month he's been asleep for at least an hour and then he opens his eyes, they have a blank stare, his arms and legs elevate off of the bed and they are stiff, straight out and begin to shake. The episodes last about 30 seconds and then are over. Once again, some seizures that are breaking through 3 different drugs.
The next discussion was the PET scan. She talked about his seizure and how it made them read the test differently but how it really helped in lighting up the affected area in the brain. And when I say area, it's singular. As of right now, they see ONE small area near the midline, on the left side of the brain. The amazing thing is that this is exactly what Dr. Joshi had predicted a month ago. She noticed how he tends to drag his right leg, the EEG showed certain information and she went off of what we told her happened during a seizure. Without having a picture, she had predicted she would find cortical dysplasia, near the midline, most likely on the left side. We found just that. The area affected, is so close to the area that controls his right leg. Which obviously makes sense since he has a tendency to drag that leg when he walks. We now know, that surgery IS an option, although it's likely that something may happen to the function of his right leg as a result of the surgery.
Here is what the plan is. When a child is diagnosed at such a young age with epilepsy, she likes to have it under control within 2 years before surgery is considered - if surgery is even an option. We're at 2 years now, but she likes to call our first year after his diagnosis a "honeymoon period" because his seizures were under pretty good control. So for the next several months I have to contact the neurologist every 2 weeks to update her with information from his seizure log. As breakthrough seizures continue, the drugs will continue to be adjusted. Once the Tegretol is at it's max (we're pretty close) then the plan may be to switch to Depakote. The goal is not only stopping the seizures, but getting those constant spikes in the brain under control to try and help his intellectual growth. The spikes occurring every second in his brain are hindering his intellectual development. The key is having the right combination of drugs, that work differently, making sure one of them is controlling all the spikes and getting it right to prevent breakthrough seizures. If the multiple medications don't work for Beau then we have to talk seriously about the risk vs. benefit of brain surgery. No parent wants to think about that nor should they have to. The risk is high that surgery could damage his right leg. But, is the risk higher that constant brain spikes and seizures would be more harmful?
I guess I praise God that maybe there is an answer for Beau. Some people with epilepsy don't have an option. More testing would be required to be 100% certain, including another PET scan (one where he doesn't have a seizure) and another inpatient EEG. The way it looks now though, is that surgery is an option for Beau down the road. Theoretically the surgery would remove the abnormal area and hopefully eliminate the seizures and the spikes. If that really worked, what might Beau's potential be? Maybe he'd be able to learn even more, but maybe he'd walk with a limp. There are no guarantees in life and certainly no guarantees that everything is full proof. Beau is who he is and he's wonderful and will always be intellectually disabled but the thought that maybe he could have an even brighter future gives me some peace.
This result was my "best case scenario". I had let plenty of people know that this is what I thought could be the best possible outcome. She didn't call and say that multiple areas of his brain were affected and that surgery would never be an option. That was my worst case scenario. Beau has an "out" if these drugs don't work for him. I cry when I think of brain surgery on a toddler and not just any toddler, my toddler. BUT, I rejoice in the fact that he may have an opportunity to potentially live seizure free. What an amazing life that might be for him......
Fast forward to Wednesday (2 days ago).......We took Beau to Iowa City for his PET scan and were fortunate enough to get the best sedation team nurse, Roger, once again. I feel like he's becoming part of our family. I guess in some ways he really is - he's a part of our hospital family. After a stressful time for Beau of getting his IV put in, in the Pediatric Specialty Clinic, they sent us downstairs to the PET scan department. Roger met us down there and explained to us that he would be administering 3 different drugs to Beau - different drugs than were used for the MRI because this test would be longer and required that he not wake up and move at all during it.
The first drug, Versed, was administered. This is a drug that for a long time, we actually used as a rescue drug during a seizure. This is commonly used among anesthesia as it helps to calm a person. It calmed Beau and next came the Propofol - or as many people now know it - the drug that killed Michael Jackson. Roger had warned us that when the drug is administered people can become excited and their limbs can kick and flail. I was holding Beau during this and his body did just that, but the movements became very erratic and his eyes rolled back into his head and his legs tightened up. Roger recognized it as a seizure right away and grabbed him out of my arms. A doctor and a PET scan nurse were in the room as well and all jumped into action. The seizure was short lived, only about 20-25 seconds. I was shaking badly and Andy and I just stared at each other. It wasn't exactly the way we had thought the day would start for Beau. The seizure changed the way that they would read their test, but they said that they could still do the scan. After Beau was out from the sedation, they started administering the radiotracers. That process took about 45 minutes for it to get into his body. After that was completed, they took him in for his test which took about 30 minutes to do. After a short time in the recovery room, they drew some labs and we were free to go home.
Yesterday I got the phone call from our neurologist. She started off talking about the most recent blood level of Tegretol. It was low once again. It seems that Beau's body just doesn't seem to be phased by some of these drugs. Because he has had some different types of small seizures over the last month and because he had a seizure right there in the hospital, she increased his Tegretol once again. Three times in the last month he's been asleep for at least an hour and then he opens his eyes, they have a blank stare, his arms and legs elevate off of the bed and they are stiff, straight out and begin to shake. The episodes last about 30 seconds and then are over. Once again, some seizures that are breaking through 3 different drugs.
The next discussion was the PET scan. She talked about his seizure and how it made them read the test differently but how it really helped in lighting up the affected area in the brain. And when I say area, it's singular. As of right now, they see ONE small area near the midline, on the left side of the brain. The amazing thing is that this is exactly what Dr. Joshi had predicted a month ago. She noticed how he tends to drag his right leg, the EEG showed certain information and she went off of what we told her happened during a seizure. Without having a picture, she had predicted she would find cortical dysplasia, near the midline, most likely on the left side. We found just that. The area affected, is so close to the area that controls his right leg. Which obviously makes sense since he has a tendency to drag that leg when he walks. We now know, that surgery IS an option, although it's likely that something may happen to the function of his right leg as a result of the surgery.
Here is what the plan is. When a child is diagnosed at such a young age with epilepsy, she likes to have it under control within 2 years before surgery is considered - if surgery is even an option. We're at 2 years now, but she likes to call our first year after his diagnosis a "honeymoon period" because his seizures were under pretty good control. So for the next several months I have to contact the neurologist every 2 weeks to update her with information from his seizure log. As breakthrough seizures continue, the drugs will continue to be adjusted. Once the Tegretol is at it's max (we're pretty close) then the plan may be to switch to Depakote. The goal is not only stopping the seizures, but getting those constant spikes in the brain under control to try and help his intellectual growth. The spikes occurring every second in his brain are hindering his intellectual development. The key is having the right combination of drugs, that work differently, making sure one of them is controlling all the spikes and getting it right to prevent breakthrough seizures. If the multiple medications don't work for Beau then we have to talk seriously about the risk vs. benefit of brain surgery. No parent wants to think about that nor should they have to. The risk is high that surgery could damage his right leg. But, is the risk higher that constant brain spikes and seizures would be more harmful?
I guess I praise God that maybe there is an answer for Beau. Some people with epilepsy don't have an option. More testing would be required to be 100% certain, including another PET scan (one where he doesn't have a seizure) and another inpatient EEG. The way it looks now though, is that surgery is an option for Beau down the road. Theoretically the surgery would remove the abnormal area and hopefully eliminate the seizures and the spikes. If that really worked, what might Beau's potential be? Maybe he'd be able to learn even more, but maybe he'd walk with a limp. There are no guarantees in life and certainly no guarantees that everything is full proof. Beau is who he is and he's wonderful and will always be intellectually disabled but the thought that maybe he could have an even brighter future gives me some peace.
This result was my "best case scenario". I had let plenty of people know that this is what I thought could be the best possible outcome. She didn't call and say that multiple areas of his brain were affected and that surgery would never be an option. That was my worst case scenario. Beau has an "out" if these drugs don't work for him. I cry when I think of brain surgery on a toddler and not just any toddler, my toddler. BUT, I rejoice in the fact that he may have an opportunity to potentially live seizure free. What an amazing life that might be for him......
Monday, September 26, 2011
Tomorrow's PET Scan
Well tomorrow Beau goes back to Iowa City for his PET scan. All the appropriate staff from the U of I have contacted me and they are all set. I had the PET nurse explain to me in child-like terms exactly what happens during the scan. Let's see how I do at explaining......
Because Beau will be having sedation, he is not to eat or drink after midnight. The PET nurse explained to me that she doesn't want Beau eating or drinking for another reason. Apparently the PET scan is a metabolic test. They want the tissue, cells, muscles etc. hungry for glucose. Once they get Beau asleep, they will essentially inject sugar water through his IV. Normal healthy tissue will absorb the sugar water whereas unhealthy or abnormal tissue/cells, etc. will not. They will be watching to see what areas of the brain aren't grabbing onto the sugar. That is my generic understanding of the test but it seems to make sense to me. Locating this abnormal/unhealthy tissue in the brain will tell them where the seizures are originating from. This whole process will take longer than the MRI so best of luck to the sedation team in keeping Beau out for 1 1/2 hours. The sedation team may need a backup sedation team!
My prayer is for an uneventful morning of testing and answers to our questions. After we get through tomorrow we'll look ahead to Friday when Beau gets tubes put back into his ears. First things first.....
Because Beau will be having sedation, he is not to eat or drink after midnight. The PET nurse explained to me that she doesn't want Beau eating or drinking for another reason. Apparently the PET scan is a metabolic test. They want the tissue, cells, muscles etc. hungry for glucose. Once they get Beau asleep, they will essentially inject sugar water through his IV. Normal healthy tissue will absorb the sugar water whereas unhealthy or abnormal tissue/cells, etc. will not. They will be watching to see what areas of the brain aren't grabbing onto the sugar. That is my generic understanding of the test but it seems to make sense to me. Locating this abnormal/unhealthy tissue in the brain will tell them where the seizures are originating from. This whole process will take longer than the MRI so best of luck to the sedation team in keeping Beau out for 1 1/2 hours. The sedation team may need a backup sedation team!
My prayer is for an uneventful morning of testing and answers to our questions. After we get through tomorrow we'll look ahead to Friday when Beau gets tubes put back into his ears. First things first.....
Wednesday, September 21, 2011
Beau's favorite old sweatshirt....
I was going through Beau's clothing for a recent garage sale and was sitting on the floor sorting when Beau came over to check out what I was doing. He realized the clothes were his and he reached in the box and grabbed out an old red Nike sweatshirt that he had worn quite often - when it fit him. The sweatshirt is a size 24 month and Beau wears a size 3T so naturally I was going to sell it. It's a good thing I didn't. He grabbed the sweatshirt from the box, motioned for help to remove the shirt he was wearing and wanted help in getting the old red sweatshirt on. I told him it was too small, but he insisted so I thought, whatever, and put it on him. He stood in front of his mirror admiring himself and the following pictures are a result of his trip down memory lane in his favorite sweatshirt! The very last picture is Beau in his sweatshirt when he was about 16 months old - back when it fit him! Enjoy!
And the way the sweatshirt used to fit back in 2009 when he was 16 months old.........
Guess I won't be selling it anytime soon.....I'll store it and keep it as a memory!
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| Probably my favorite picture of all of them - his 2 chins are the best with the serious face! |
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| This is his pose when he is super excited about something - like finding his long lost sweatshirt! |
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| Just being silly in front of the mirror. |
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| Doing his famous SURPRISED look! |
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| Tada! |
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| Back when he was a tubbo at 16 months with grandma - when the sweatshirt fit him and his 2 chins much better! |
Friday, September 16, 2011
MRI and the results....
Yesterday was Beau's second ever MRI. Thankfully Beau's Aunt Gabbi was kind enough to drop off a container of trucks and cars that cousin Lucas wanted to give to Beau from his own collection. As you can see from the picture, Beau was very excited for the new toys and it made our drive down and time at the hospital, a little easier on him.
We arrived bright and early at the University of Iowa for the test. We were blessed with a visit from our awesome social worker, Jim shortly after we got there. He always checks on us and makes sure we don't have any needs he might be able to help us with. Beau was doing well at this time - around 9 AM - as he hadn't had anything to eat or drink after midnight. He was starting to sign "drink" while we were in the lobby waiting for the MRI but otherwise he wasn't grumpy or crabby at all. A sedation team nurse came out to the lobby to visit with us. When I looked up to see him I recognized him as the sedation nurse we had, had for Beau's first MRI two years ago. His name is Roger and I immediately said to him that he was the one who had been there for Beau's initial MRI. He checked the computer and found that I was right. I reminded him that I would never forget that day and would never forget the doctors and kind people that were a part of it. Roger is probably in his fifties and is just amazing with kids. He was so good with Beau. He checked veins all over his little body and put numbing cream on several locations.
After about 30 minutes, time enough for the numbing medication to take effect, Roger came back out and got us. At this point, Beau was catching on to the fact that once again people in white coats and scrubs were surrounding him and it might be painful. He started to panic and was pretty upset. Roger got the IV in his hand on the first try but Beau was hysterical. He doesn't usually get that way - especially when the hand was numbed. Heck, this poor kid has had so many needle pokes and tons are without any numbing cream and he does fine with them - better than I would! As Roger put it, unfortunately Beau has been around this type of stuff so many times, he knows what's coming and it's starting to scare him.
Roger got the first dose of medication into Beau. It took about 7 minutes and Beau was asleep. It made him upset as the medication went in and he fought the drug but eventually he was asleep. He made the cutest little cooing noises as he lay there in my arms sound asleep. We waited a few minutes and I stood up and laid him on the bed to transport him to the MRI. It was like he sensed the altitude change lol. He woke up so fast and started screaming and fighting. I picked him back up and Roger had to add a second dose. This time he was out for the count. The radiologist spoke with us and explained a few things to us and then they took him for the test.
After only about 30 minutes, the test was complete and from the waiting room, I could hear Beau's cry. Sure enough, the doctor came around the corner to get us. Roger was holding Beau instead of Beau being asleep on the gurney. Roger said that when he went to transfer Beau from the MRI table to the gurney, he woke up so fast. Roger laughed because he couldn't figure out how he could wake up so fast with all the medication in him. They transported him upstairs to recovery and Beau fell back asleep.
Above is a picture of Beau shortly after we got into the car and were driving home! He is out and super pale!! He's one tough kiddo though and we were so proud of him.
Today I received a call from a nurse in neurology at the U of I. The preliminary report was back from the radiologist. There weren't any new findings on this MRI or any changes from his initial MRI from 2 years ago. This is somewhat expected, as Dr. Joshi had warned us that she may not be able to see cortical dysplasia on an MRI. She had said that if she didn't see it on the MRI, then she would order a PET scan. Now I wait to hear from Dr. Joshi and I look ahead to another test. All of these tests are required anyway if surgery becomes an option or recommendation. There is a series of steps and I guess we need to look at this as Step One in the series. I wasn't sure how to feel when the nurse told me the results. Relieved that there is nothing new on there? Yes. Disappointed that they didn't see something that could be the cause of the seizures and might be fixable? Yes. Understanding of the fact that the MRI might not show the cortical dysplasia and that the PET scan might ultimately hold our answer? Yes. I am glad there isn't anything aside from the P-ACC, which we of course already knew about. I am half hoping though that the PET Scan shows cortical dysplasia that may be surgically fixable. Or it may show cortical dysplasia, but there may be so many areas affected, that surgery isn't an option. If surgery was an option and meant that Beau might be able to live life seizure free, wouldn't that be amazing for him? It's all a bunch of "what ifs" so I guess I can't sit around contemplating until we know the facts. The pieces of Beau's Medical Puzzle are slowly falling in to place. Some moments I wish they were falling in to place a lot quicker.
For today, I rejoice in the fact that no new, major issues were found. For that, I am grateful and God is good. Tomorrow we'll worry about Step Two.
We arrived bright and early at the University of Iowa for the test. We were blessed with a visit from our awesome social worker, Jim shortly after we got there. He always checks on us and makes sure we don't have any needs he might be able to help us with. Beau was doing well at this time - around 9 AM - as he hadn't had anything to eat or drink after midnight. He was starting to sign "drink" while we were in the lobby waiting for the MRI but otherwise he wasn't grumpy or crabby at all. A sedation team nurse came out to the lobby to visit with us. When I looked up to see him I recognized him as the sedation nurse we had, had for Beau's first MRI two years ago. His name is Roger and I immediately said to him that he was the one who had been there for Beau's initial MRI. He checked the computer and found that I was right. I reminded him that I would never forget that day and would never forget the doctors and kind people that were a part of it. Roger is probably in his fifties and is just amazing with kids. He was so good with Beau. He checked veins all over his little body and put numbing cream on several locations.
After about 30 minutes, time enough for the numbing medication to take effect, Roger came back out and got us. At this point, Beau was catching on to the fact that once again people in white coats and scrubs were surrounding him and it might be painful. He started to panic and was pretty upset. Roger got the IV in his hand on the first try but Beau was hysterical. He doesn't usually get that way - especially when the hand was numbed. Heck, this poor kid has had so many needle pokes and tons are without any numbing cream and he does fine with them - better than I would! As Roger put it, unfortunately Beau has been around this type of stuff so many times, he knows what's coming and it's starting to scare him.
Roger got the first dose of medication into Beau. It took about 7 minutes and Beau was asleep. It made him upset as the medication went in and he fought the drug but eventually he was asleep. He made the cutest little cooing noises as he lay there in my arms sound asleep. We waited a few minutes and I stood up and laid him on the bed to transport him to the MRI. It was like he sensed the altitude change lol. He woke up so fast and started screaming and fighting. I picked him back up and Roger had to add a second dose. This time he was out for the count. The radiologist spoke with us and explained a few things to us and then they took him for the test.
After only about 30 minutes, the test was complete and from the waiting room, I could hear Beau's cry. Sure enough, the doctor came around the corner to get us. Roger was holding Beau instead of Beau being asleep on the gurney. Roger said that when he went to transfer Beau from the MRI table to the gurney, he woke up so fast. Roger laughed because he couldn't figure out how he could wake up so fast with all the medication in him. They transported him upstairs to recovery and Beau fell back asleep.
After about 15 minutes we woke him up to see if we could get him to drink so that the IV could be removed and we could go home. He took his drink and out came the IV. It was time to head home!
Today I received a call from a nurse in neurology at the U of I. The preliminary report was back from the radiologist. There weren't any new findings on this MRI or any changes from his initial MRI from 2 years ago. This is somewhat expected, as Dr. Joshi had warned us that she may not be able to see cortical dysplasia on an MRI. She had said that if she didn't see it on the MRI, then she would order a PET scan. Now I wait to hear from Dr. Joshi and I look ahead to another test. All of these tests are required anyway if surgery becomes an option or recommendation. There is a series of steps and I guess we need to look at this as Step One in the series. I wasn't sure how to feel when the nurse told me the results. Relieved that there is nothing new on there? Yes. Disappointed that they didn't see something that could be the cause of the seizures and might be fixable? Yes. Understanding of the fact that the MRI might not show the cortical dysplasia and that the PET scan might ultimately hold our answer? Yes. I am glad there isn't anything aside from the P-ACC, which we of course already knew about. I am half hoping though that the PET Scan shows cortical dysplasia that may be surgically fixable. Or it may show cortical dysplasia, but there may be so many areas affected, that surgery isn't an option. If surgery was an option and meant that Beau might be able to live life seizure free, wouldn't that be amazing for him? It's all a bunch of "what ifs" so I guess I can't sit around contemplating until we know the facts. The pieces of Beau's Medical Puzzle are slowly falling in to place. Some moments I wish they were falling in to place a lot quicker.
For today, I rejoice in the fact that no new, major issues were found. For that, I am grateful and God is good. Tomorrow we'll worry about Step Two.
Wednesday, September 14, 2011
Tomorrow's MRI....
Looking ahead to tomorrow and thinking about Beau's MRI. This will be his second MRI, his first one having been when he was only 17 months old. The neurologist said that when the brain is that immature, it is hard to see certain things. With the increased seizure activity and status seizure she wanted another MRI. She believes that now that his brain is older, she will be able to see things more clearly. Obviously we already know he has P-ACC, but she is fairly certain she is going to find cortical dysplasia. We have mentally prepared ourselves for that but if the MRI shows something additional, I'm not sure how we'll react. I guess we'll react like we have with everything else. We'll listen, take it all in, ask questions and move forward. After all, not matter what, God designed Beau's brain in such a rare and special way that it's made him an incredible and loving little boy. The sedation team will meet with Beau around 9:40 AM tomorrow. They will get him ready for the test, put him under anesthesia and then the MRI begins around 10:30. They expect it will last until at least noon and then he'll be in recovery. We are going to have one hungry little boy when he wakes up! It will be a day or two before we'll get the results so we'll work on making it through tomorrow and worry about the results later. If the neurologist doesn't see what she needs to see on the MRI, we will go back at a later date for a PET Scan.
This photo is of Beau's brain at 17 months on MRI. It will be interesting to see the difference in the image with the new MRI. It's all in God's hands and we are just happy that we will be filling in some more pieces to Beau's medical puzzle.
Beau will just be happy because he'll get to have a lazy day, we'll get him Subway when we leave the hospital AND he'll get a new car/truck toy as a present! Prayers for a good day tomorrow!
Beau will just be happy because he'll get to have a lazy day, we'll get him Subway when we leave the hospital AND he'll get a new car/truck toy as a present! Prayers for a good day tomorrow!
Monday, September 12, 2011
Beau's Baby.....
We have a new "baby" in our house this week. This new "baby" is a doll from the 50's that Beau found at Grandma Carolyn's house. He's seen her at grandma's house for quite some time, sitting in the closet, usually afraid of her. But on Tuesday, that all changed and Beau wanted to take the baby from the closet and play with her. We all sort of wondered about his sudden interest in this doll. She's a bigger doll and wears a sweater and pants and a diaper. That afternoon when I picked him up from Carolyn's house, he made sure that I met his baby, held his baby, patted his baby's back and changed her diaper. Oh yes, I had to do it all and then he wanted me to bathe her! Needless to say, we weren't leaving grandma's house that night without baby. He wanted me to hold her in my lap while driving - to which I drew the line and allowed baby to sit on the passenger seat next to me. That seemed to satisfy Mr. Beau and he was ready to hold her once we got home.
For the past several days/nights baby has become a big piece of Beau's life. I refer to her as Beau's baby most of the time but we also affectionately call her "Shelly" because Beau can make the sound "Shh" and it's the closest to the sound of a name we could come up with for him to say. He constantly wants me to hold her or he wants to push her around in his stroller, change her diaper, bathe her etc. Bathing her becomes tricky because she fills up with water. Beau is insistent though that when he takes a bath, baby takes a bath which results in a long period of time to drain water from the doll. It becomes quite funny because we have to tip baby forward just right so that the water can drain out of the hole in her mouth. She looks like a fountain. On one night after bath, I balanced baby over the edge of the tub and used an open drawer from the washstand to balance baby over the tub so that she could drain. In the middle of the night when I woke up to use the restroom I scared myself half to death walking in and seeing that baby! The next morning Beau was obsessing over the doll again and I was trying to get both of us ready for work and school. I was in the bathroom getting ready and he dropped the large plastic doll on my toes - ouch. I was fed up with the doll and tossed it out of the bathroom into the hallway. That was when Beau's actions showed me I was a horrible parent lol. He was so concerned for that doll that he hurried over to it crying and laid his head on top of it. I immediately felt horrible. I had thrown this baby that he considered very special and dear to him. I have since been much more careful with Beau's baby.
It wasn't until later in the week that we solved the mystery of the ever important doll. At school, on Tuesday, the same day Beau had removed the baby from the closet at grandma's house, a new little girl had started in his preschool class. Carolyn had taken Beau into his classroom towards the end of the week and noticed that the new 3 year old had started. Our family actually knows this family from church but hadn't realized both kids would be in the same class. From what I have heard this little girl, who is a triplet, is very small for her age, has Down Syndrome and has lots of delays. She can't walk so she is carried around by the teacher or pushed in her stroller. Carolyn said that when Beau went in and saw her, he instantly lit up! His teacher said that he really loved being around "M" and was always trying to help with her care, for example pushing her in her stroller. It seems that we have found our explanation for the sudden interest in the doll and wanting to carry her around and take care of her. He seems to be quite fond of his new classmate and is carrying that nurturing home to his baby doll.
This little boy never ceases to amaze me with his love and emotions. Seems like he might enjoy a sibling.......maybe some day. For now Mr. Beau, you'll have to settle for Shhhhhelly!
For the past several days/nights baby has become a big piece of Beau's life. I refer to her as Beau's baby most of the time but we also affectionately call her "Shelly" because Beau can make the sound "Shh" and it's the closest to the sound of a name we could come up with for him to say. He constantly wants me to hold her or he wants to push her around in his stroller, change her diaper, bathe her etc. Bathing her becomes tricky because she fills up with water. Beau is insistent though that when he takes a bath, baby takes a bath which results in a long period of time to drain water from the doll. It becomes quite funny because we have to tip baby forward just right so that the water can drain out of the hole in her mouth. She looks like a fountain. On one night after bath, I balanced baby over the edge of the tub and used an open drawer from the washstand to balance baby over the tub so that she could drain. In the middle of the night when I woke up to use the restroom I scared myself half to death walking in and seeing that baby! The next morning Beau was obsessing over the doll again and I was trying to get both of us ready for work and school. I was in the bathroom getting ready and he dropped the large plastic doll on my toes - ouch. I was fed up with the doll and tossed it out of the bathroom into the hallway. That was when Beau's actions showed me I was a horrible parent lol. He was so concerned for that doll that he hurried over to it crying and laid his head on top of it. I immediately felt horrible. I had thrown this baby that he considered very special and dear to him. I have since been much more careful with Beau's baby.
It wasn't until later in the week that we solved the mystery of the ever important doll. At school, on Tuesday, the same day Beau had removed the baby from the closet at grandma's house, a new little girl had started in his preschool class. Carolyn had taken Beau into his classroom towards the end of the week and noticed that the new 3 year old had started. Our family actually knows this family from church but hadn't realized both kids would be in the same class. From what I have heard this little girl, who is a triplet, is very small for her age, has Down Syndrome and has lots of delays. She can't walk so she is carried around by the teacher or pushed in her stroller. Carolyn said that when Beau went in and saw her, he instantly lit up! His teacher said that he really loved being around "M" and was always trying to help with her care, for example pushing her in her stroller. It seems that we have found our explanation for the sudden interest in the doll and wanting to carry her around and take care of her. He seems to be quite fond of his new classmate and is carrying that nurturing home to his baby doll.
This little boy never ceases to amaze me with his love and emotions. Seems like he might enjoy a sibling.......maybe some day. For now Mr. Beau, you'll have to settle for Shhhhhelly!
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| Sitting baby on the couch to watch football. |
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| This is how you drain water from baby! |
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| We couldn't leave the house without her for our evening walk. |
Monday, September 5, 2011
Another hospital stay
I hadn't even finished typing up my blog about our neurology visit on Wednesday the 31st, when on Thursday night, Beau had another prolonged seizure. This one lasted approximately 20 minutes. The versed didn't work again this time. Two times now in the last 2 weeks the versed hasn't stopped the seizure and it makes Beau vomit immediately after giving it. Vomiting during a seizure is a horrible thing to watch by the way. This seizure resulted in another ambulance trip to the University of Iowa for more monitoring.
I'll back up to our appointment that happened on Wednesday prior to this seizure. At our neurology visit, the doctor came into the room and sat down immediately with quite a bit to say. Usually she'll come in, ask us some questions and then talk about her plans and then within 15 minutes we're done. This time was much different though. She spent over an hour in the room with me, Beau and my mother-in-law Carolyn. She was very concerned at the increased amount of seizures and this was even before the most recent prolonged seizure. She had reviewed his inpatient EEG from April of this year and pulled up a few clips for me to see. She showed me what his brain was doing at night during sleep. Literally EVERY second during the night, Beau's brain was firing off electrical activity. It was firing during the day, but not quite as often as during the night. It would make sense, since all of his seizures have occurred during sleep. Looking closer, she was able to determine that a huge amount of the electrical activity is coming from the midline frontal portion of the brain. This isn't where the partial agenesis of the corpus callosum is, so she is thinking that there is actually something more that is going on his brain. Based on what I've told her are my observations, the way his seizures display themselves and her review of the EEG, she believes that Beau has another brain abnormality that wasn't visible on his initial MRI at 17 months because his brain was so immature. Therefore, she wants to get another MRI done since Beau's brain is now more mature and she can ask for specific cuts on the MRI in the frontal lobe of the brain. She believes that she will find that Beau has cortical dysplasia - another congenital brain abnormality. If she is unable to get a good view on the MRI, she is going to order a PET scan to see if it can be visualized on there. She explained to me that when Beau's brain is constantly firing, it is inhibiting much intellectual growth. She's even more concerned now that his brain has shown us that it can have status seizures. The most anti-seizure drugs that she will put a child on at one time is 3. After this latest seizure, Beau is maxed on 2 drugs and a third one has been added at bedtime to the other two. First line of treatment is medication. If the meds won't stop it, down the road we think about surgery. The MRI gives the doctor information about whether or not neurosurgery would be an option down the road. The word neurosurgery in the same sentence as Beau makes me want to vomit. I can't put the cart before the horse, so right now I choose not to think too much about that. We don't even know yet if that would ever be a possibility. I just wonder how many more things they can possibly find wrong with his brain on this MRI? Nothing went right in the formation of my poor baby's brain - with the exception of his ability to love and charm.
I mentioned to the doctor that I had read a lot about the higher possibility of kids with ACC having heart issues, because it is a midline structure. She told me that kids diagnosed with C-ACC will have an ECHO as a part of the routine package of tests that come along with the diagnosis. Because Beau has P-ACC it wasn't originally done. She said at any time she would order it if she felt necessary. During her physical assessment of Beau she listened to his heart, heard a murmur and decided to order the ECHO. During our hospitalization on Friday, the ECHO was done. We think everything was OK, but will wait to hear from our doctor next week.
We've now increased to the max our doses of 2 anti-seizure drugs, Keppra & Carbamazepine (Tegretol) and we've added Dilantin at night. We've changed from versed to Diastat as an emergency rescue drug and we've been hit with the thought of another brain abnormality and the mention of the word neurosurgery. I feel like maybe someone is playing a sick joke on me or maybe I just got hit by a bus. I'm like one of those inflatable punching bags that you punch and it falls over and then pops right back up, only to be hit again. I'm often known to say "It could always be worse - there are other families dealing with more difficult things" which on most days I really do feel. But today I feel like saying to some people, "you're damn lucky and you're blessed that your child doesn't have to go through this hell". The toll this takes on the child and the family is a lot and it takes a huge amount of strength to deal with on a daily basis. Imagine how you might feel if you were terrified to go to sleep because you might miss your child having a horrible seizure? This little boy deserves something fun and great in his life - not this crap.
This last hospital stay and experience at the U of I was horrible and I wasn't impressed at all. Had we been able to see our own neurologist, it would have been much better. Instead we had a Japanese resident that couldn't speak well enough English and couldn't understand some of the words I used with him. A lot was lost in translation. The tipping point was when I informed him I wouldn't leave the hospital without Diastat instead of the versed. When Dr. Dummy didn't know what Diastat was, I about lost it. You're dealing with a neuro patient with seizures and you don't know what Diastat is? Later when he ordered the drug I asked him when I was to give the drug. With versed you wait 3-4 minutes into the seizure before you give it, because he might come out of the seizure on his own. Doc Dummy told me to give it immediately - at the onset of symptoms. WTF? My words to him were, "Why would I do that? His seizure could stop at 20 seconds and now I've given him a nasty drug for no reason." His answer "No you give right away. Take longer to get in system." I proceeded to let him know I didn't agree and that I would check with the pharmacist. When the pharmacist didn't know I made them page the neurologist on call, who is also head of the department. Her instructions; give the drug after 5 minutes. That answer made sense. I have plenty more of examples from this short trip but that is just one. I will have plenty to complain about to whoever will listen at the U of I.
Now we're home and we look towards the MRI which will take place on September 15th. Meanwhile I wait for the next bad seizure and feel confident that the odds of it happening are very high. I give his body one week and then it will have adjusted itself to the drugs again and we'll be back at it. Some may call that negative thinking, I call it reality.
As always, prayers are always welcome and never turned away. Keep Beau in your hearts and minds as he goes through these difficult trials and tribulations.
I'll back up to our appointment that happened on Wednesday prior to this seizure. At our neurology visit, the doctor came into the room and sat down immediately with quite a bit to say. Usually she'll come in, ask us some questions and then talk about her plans and then within 15 minutes we're done. This time was much different though. She spent over an hour in the room with me, Beau and my mother-in-law Carolyn. She was very concerned at the increased amount of seizures and this was even before the most recent prolonged seizure. She had reviewed his inpatient EEG from April of this year and pulled up a few clips for me to see. She showed me what his brain was doing at night during sleep. Literally EVERY second during the night, Beau's brain was firing off electrical activity. It was firing during the day, but not quite as often as during the night. It would make sense, since all of his seizures have occurred during sleep. Looking closer, she was able to determine that a huge amount of the electrical activity is coming from the midline frontal portion of the brain. This isn't where the partial agenesis of the corpus callosum is, so she is thinking that there is actually something more that is going on his brain. Based on what I've told her are my observations, the way his seizures display themselves and her review of the EEG, she believes that Beau has another brain abnormality that wasn't visible on his initial MRI at 17 months because his brain was so immature. Therefore, she wants to get another MRI done since Beau's brain is now more mature and she can ask for specific cuts on the MRI in the frontal lobe of the brain. She believes that she will find that Beau has cortical dysplasia - another congenital brain abnormality. If she is unable to get a good view on the MRI, she is going to order a PET scan to see if it can be visualized on there. She explained to me that when Beau's brain is constantly firing, it is inhibiting much intellectual growth. She's even more concerned now that his brain has shown us that it can have status seizures. The most anti-seizure drugs that she will put a child on at one time is 3. After this latest seizure, Beau is maxed on 2 drugs and a third one has been added at bedtime to the other two. First line of treatment is medication. If the meds won't stop it, down the road we think about surgery. The MRI gives the doctor information about whether or not neurosurgery would be an option down the road. The word neurosurgery in the same sentence as Beau makes me want to vomit. I can't put the cart before the horse, so right now I choose not to think too much about that. We don't even know yet if that would ever be a possibility. I just wonder how many more things they can possibly find wrong with his brain on this MRI? Nothing went right in the formation of my poor baby's brain - with the exception of his ability to love and charm.
I mentioned to the doctor that I had read a lot about the higher possibility of kids with ACC having heart issues, because it is a midline structure. She told me that kids diagnosed with C-ACC will have an ECHO as a part of the routine package of tests that come along with the diagnosis. Because Beau has P-ACC it wasn't originally done. She said at any time she would order it if she felt necessary. During her physical assessment of Beau she listened to his heart, heard a murmur and decided to order the ECHO. During our hospitalization on Friday, the ECHO was done. We think everything was OK, but will wait to hear from our doctor next week.
We've now increased to the max our doses of 2 anti-seizure drugs, Keppra & Carbamazepine (Tegretol) and we've added Dilantin at night. We've changed from versed to Diastat as an emergency rescue drug and we've been hit with the thought of another brain abnormality and the mention of the word neurosurgery. I feel like maybe someone is playing a sick joke on me or maybe I just got hit by a bus. I'm like one of those inflatable punching bags that you punch and it falls over and then pops right back up, only to be hit again. I'm often known to say "It could always be worse - there are other families dealing with more difficult things" which on most days I really do feel. But today I feel like saying to some people, "you're damn lucky and you're blessed that your child doesn't have to go through this hell". The toll this takes on the child and the family is a lot and it takes a huge amount of strength to deal with on a daily basis. Imagine how you might feel if you were terrified to go to sleep because you might miss your child having a horrible seizure? This little boy deserves something fun and great in his life - not this crap.
This last hospital stay and experience at the U of I was horrible and I wasn't impressed at all. Had we been able to see our own neurologist, it would have been much better. Instead we had a Japanese resident that couldn't speak well enough English and couldn't understand some of the words I used with him. A lot was lost in translation. The tipping point was when I informed him I wouldn't leave the hospital without Diastat instead of the versed. When Dr. Dummy didn't know what Diastat was, I about lost it. You're dealing with a neuro patient with seizures and you don't know what Diastat is? Later when he ordered the drug I asked him when I was to give the drug. With versed you wait 3-4 minutes into the seizure before you give it, because he might come out of the seizure on his own. Doc Dummy told me to give it immediately - at the onset of symptoms. WTF? My words to him were, "Why would I do that? His seizure could stop at 20 seconds and now I've given him a nasty drug for no reason." His answer "No you give right away. Take longer to get in system." I proceeded to let him know I didn't agree and that I would check with the pharmacist. When the pharmacist didn't know I made them page the neurologist on call, who is also head of the department. Her instructions; give the drug after 5 minutes. That answer made sense. I have plenty more of examples from this short trip but that is just one. I will have plenty to complain about to whoever will listen at the U of I.
Now we're home and we look towards the MRI which will take place on September 15th. Meanwhile I wait for the next bad seizure and feel confident that the odds of it happening are very high. I give his body one week and then it will have adjusted itself to the drugs again and we'll be back at it. Some may call that negative thinking, I call it reality.
As always, prayers are always welcome and never turned away. Keep Beau in your hearts and minds as he goes through these difficult trials and tribulations.
"My son, my precious child,
I love you and I would never leave you.
During your times of trial and suffering,
when you see only one set of footprints,
it was then that I carried you."
I love you and I would never leave you.
During your times of trial and suffering,
when you see only one set of footprints,
it was then that I carried you."
Tuesday, August 30, 2011
Pure, simple joy....
Often times I stress so much about the day to day duties of my job, taking care of the house, being a wife and being a mother to a special needs child, that I often forget to take joy in life's simple yet fabulous moments. Tonight, my toddler reminded me of how beautiful life is, even when it's something so simple.
Beau has found that it's pretty fun to throw washcloths. It was actually a bad habit that grandma DeWitt taught him, but it's become quite funny. Tonight, while taking his bath he wanted to play the washcloth throwing game. I figure he's been watching football so much lately that throwing will be the fun thing to do during football season! You see, we have a door on our tub shower combination and the rules of Beau's game are this; ball up the wet, squeezed out washcloth and throw it over the top of the doors. That's it, that's the rules. We did this multiple times and his laughter grew and grew. It was the full belly laugh and the sparkle in his eyes that was completely contagious. There's something so beautiful about a child's laughter. I began laughing as hard as him and we both nearly cried tears of joy we were laughing so hard. I don't think that I have laughed that hard in a long time. I had to pick up the phone and call Grandma and Grandpa DeWitt and as soon as they heard him laughing that pure joyous laugh, they too began laughing beyond control.
It's amazing how something as simple as throwing a washcloth could be such a memorable moment. I stress so much about Beau and his health that it makes me truly appreciate how big these "little" moments are. And next time you want to play a fun game can I recommend washcloth football?
Pure. Simple. Joy.
Beau has found that it's pretty fun to throw washcloths. It was actually a bad habit that grandma DeWitt taught him, but it's become quite funny. Tonight, while taking his bath he wanted to play the washcloth throwing game. I figure he's been watching football so much lately that throwing will be the fun thing to do during football season! You see, we have a door on our tub shower combination and the rules of Beau's game are this; ball up the wet, squeezed out washcloth and throw it over the top of the doors. That's it, that's the rules. We did this multiple times and his laughter grew and grew. It was the full belly laugh and the sparkle in his eyes that was completely contagious. There's something so beautiful about a child's laughter. I began laughing as hard as him and we both nearly cried tears of joy we were laughing so hard. I don't think that I have laughed that hard in a long time. I had to pick up the phone and call Grandma and Grandpa DeWitt and as soon as they heard him laughing that pure joyous laugh, they too began laughing beyond control.
It's amazing how something as simple as throwing a washcloth could be such a memorable moment. I stress so much about Beau and his health that it makes me truly appreciate how big these "little" moments are. And next time you want to play a fun game can I recommend washcloth football?
Pure. Simple. Joy.
Wednesday, August 24, 2011
Back to school...
I am pleased to announce that after a slight delay (a few days due to his illness) Beau started back to school yesterday and had a great day. He goes to a special education preschool classroom and started going there in March of this year. He didn't get much school experience as school was out at the end of May, but in the short time he was there, he seemed to do extremely well. He has his same teacher, a wonderful young teacher that is eager and excited to work with these kids. She was a long term sub last semester and at the end of the year beat out a lot of applicants to get the full time position. Thank goodness for that because she does so good with these kids. Right now there are 2 aides and Ms. Tyna and there are only 3 children total in the classroom. There will be 2 more children joining in the next 2 months, but right now he gets the one-on-one he needs, especially for safety reasons with his horrible balance.
One thing that Ms. Tyna did that I was so happy about was that she modified the traditional PECS (picture exchange communication system) system by taking real photographs of items (i.e. his seat at the breakfast table, the sink, the potty, the different stations in the room, food that they typically eat at school, etc.). Beau has always responded so well to REAL pictures as opposed to the computerized pictures the PECS system uses. I know they want these children to learn these because they are very universal - for instance, not all sinks look like the one at school, etc. - BUT I want to use whatever will help Beau to be successful. If the system doesn't work for everybody, let's modify it so that we can make it work for others. Therapists and educators used to fight me on this, but now they are starting to come around to my way of thinking when it comes to Beau. Take the extra time, take real pictures and mix them in with the other computer generated ones if you wish. Modify your plan to fit the needs of the child. Beau's teacher took the time to do this for Beau and on his first day of school she said he did GREAT with the picture exchange system. It was all because she individualized her plan for Beau and took the extra time to help him, making it more possible for him to become successful. There should be more teachers out there like Ms. Tyna!
All in all, a great first day for Mr. Beau. He's still a little wobbly and a little extra tired from the medication increase, but slowly but surely we are getting back to the pre-prolonged seizure Beau. He's resilient, he's tough, he's charismatic and extremely loving. Who could ask for anything better?
One thing that Ms. Tyna did that I was so happy about was that she modified the traditional PECS (picture exchange communication system) system by taking real photographs of items (i.e. his seat at the breakfast table, the sink, the potty, the different stations in the room, food that they typically eat at school, etc.). Beau has always responded so well to REAL pictures as opposed to the computerized pictures the PECS system uses. I know they want these children to learn these because they are very universal - for instance, not all sinks look like the one at school, etc. - BUT I want to use whatever will help Beau to be successful. If the system doesn't work for everybody, let's modify it so that we can make it work for others. Therapists and educators used to fight me on this, but now they are starting to come around to my way of thinking when it comes to Beau. Take the extra time, take real pictures and mix them in with the other computer generated ones if you wish. Modify your plan to fit the needs of the child. Beau's teacher took the time to do this for Beau and on his first day of school she said he did GREAT with the picture exchange system. It was all because she individualized her plan for Beau and took the extra time to help him, making it more possible for him to become successful. There should be more teachers out there like Ms. Tyna!
All in all, a great first day for Mr. Beau. He's still a little wobbly and a little extra tired from the medication increase, but slowly but surely we are getting back to the pre-prolonged seizure Beau. He's resilient, he's tough, he's charismatic and extremely loving. Who could ask for anything better?
Tuesday, August 23, 2011
Just breathe...
I guess I'm finally taking a moment to just breathe and relax. So much of my energy has gone into worrying about Beau this past week that I seemed to neglect my own feelings and emotions. I guess as a parent you seem to go on "auto pilot" and you let the adrenaline carry you through. It's what happens after the adrenaline wears off that can be hard to deal with. You're so grateful that the hard time is over but you now deal with the after effects. There are a lot of questions that go through your mind when your child is ill, sick or in an emergency situation. I think the thing I'm having the hardest time coping with is that there isn't a concrete answer as to why Beau had such a prolonged seizure. I want to know "why"? I believe there is a multitude of reasons for the horrible seizure. He was having mini seizures for the last month. His neurologist had increased his carbamazepine (Tegretol) as a result. They couldn't go any higher on his Keppra-he was already at the max. He'd also been having ear infections the past 2 weeks. For his first ear infection, they put him on omnicef. A week later the other ear was infected. That time, the doctor prescribed, azithromycin. We were at the end of the round of azithromycin when the seizure occurred. Here is where I feel I made an error; I didn't read the drug insert when I got it from the pharmacy. Beau had taken azithromycin previously - but he wasn't on carbamazepine when he did. The neurologist informed me that azithromycin can inhibit some of the absorption of carbamazepine, lowering his seizure threshold. I put my faith in the local doctor but mostly in the pharmacist to know that interaction. I shouldn't have had to read the insert, but I have learned my lesson! Not very far into the insert is the warning about carbamazepine and how it's absorption can be affected by the azithromycin. Word to the wise - don't ever expect that your physician or your pharmacist will catch those things for you. I guess I've known for quite some time now that you have to be your own advocate but this locked it in for me. There is no way to know that this was the exact cause of the seizure. I don't believe it was completely, as I think there were other factors involved. The fact is, it happened and now we move forward and pray that God will give Beau a little reprieve from the crappy days he's been having. Once again, I am amazed at Beau's strength, resiliency and ability to smile through it all. I can't believe how lucky we are to have such an inspirational and amazing child.
"There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle."
-- Albert Einstein
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| In the ER. The seizure had finally stopped and he's out like a light. |
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| After several rounds of vomiting after arriving at the U of I, he got some meds to help stop it and was finally able to sleep. |
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| The day after; exhausted but still wanted to ride around the unit in a wagon. |
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| This picture says it all - sooooo tired. |
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| Beau with "bampa" Ron, who came to visit. |
-- Albert Einstein
Wednesday, August 17, 2011
Enough already....
Sitting in the pediatrics unit at the University of Iowa at Beau's bedside, exhausted. During nap today Beau started having a seizure. Erin, our babysitter did an amazing job. She administered his rescue drug when the seizure hit the 3 minute mark, called me, the seizure wasn't stopping so I told her to hang up and call 9-1-1. I called Andy and he was close to home so he beat the ambulance there and I had to drive from work. By the time I got to the house the ambulance was gone but Erin was still there. I felt so badly for her because she was so overwhelmed. It was her last day for this summer and what a way to end it. She was pale and shaking and trying to clean up the carpet because Beau had gotten sick. I assured her she did the right thing and did great, grabbed Beau's blankie and meds and rushed to the ER. I actually squealed the tires on my mini-van which had to be a funny thing to see. When I arrived Beau was still seizing and after 30 minutes the seizure finally stopped. Because he had status epilepticus, they wanted to admit him and they sent him here, to the U of I where all of his specialists are, for observation. They transported him by ambulance and here we are. After we arrived he had a rough evening of vomiting and after some medication for the vomiting, he is finally resting. I'm sorry that this post a little sporadic and poorly written but I'm exhausted and sad. You hold it together and you hold it together and you hold it together, but eventually you have to break down. Two ER trips in one week - enough already. I just keep reminding myself - IT COULD ALWAYS BE WORSE. Any extra prayers are appreciated because I know He is listening.
Monday, August 15, 2011
Horrible balance = ER visit
Tonight turned out to be an eventful evening at the Weichers household. Although in our life, it seems to be par for the course. Beau's horrible balance causes a whole bunch of falls per day. I guess I should be grateful that we aren't in the emergency room more often with injuries. Tonight neither Andy or I could catch Beau as he took a tumble. He was simply walking, got off balance, fell and hit his head on the corner of the wall. He ended up with a pretty good gash in his head. A trip to the ER and 3 staples later and we were home. Poor kiddo.
"If you build it, they will come."
OK, so a cheesy title but hey it's an Iowa thing. For those who don't know, it's a quote from a movie made here in Iowa; Field of Dreams (Dyersville, IA) with Kevin Costner. It's an oldie but a goodie. Anyways.......That saying held true for me after a successful weekend in Minneapolis, Minnesota. This past weekend I organized an event for the NODCC; a regional gathering for families affected by ACC. I knew from information given to me by the NODCC, that Iowa didn't have many families affected by ACC. If they ARE out there, they just haven't connected with the NODCC and we aren't aware of them. It's a little lonely here in Iowa so I knew I would need to plan the event in a bigger area where more families with ACC were located if I expected to get anyone to attend. I ended up choosing Minneapolis, MN and what a great choice it was!
I arranged for our event to take place at the Radisson by the Mall of America. We were able to get a meeting room there which gave us the view of the huge indoor water park at the hotel; the Waterpark of America. We set the room up with some informational materials and a play area for the kids with some of Beau's toys. We had a buffet style lunch along with some goodies for dessert.
The last ingredient for a successful day was the people! Naturally on the day of our event a main roadway and exit to the hotel was closed, but people still managed to make it through the big city traffic jam. Including our family, we had a total of 11 families there to share in the fun afternoon. Everyone was so friendly and easy to talk to. We were all in the same boat that day. We were complete strangers with one thing in common; ACC. OK, make that two things; ACC and a huge love for our children! We're all in different stages of dealing with the ACC. Some are more willing to talk about it, others not so much; some have young children with ACC, others have grown children with ACC and so on. No matter what, I feel like some great strides were made this weekend. All of the families with the exception of ours, live within miles of each other in Minnesota and they never knew it. They never realized they had a support system right there! How rewarding to see people finding out that they have other families that "understand" so close by.
Topics of conversation included discussion about the IPAD 2 and using it as a teaching tool as well as a communication-like device. Above is a picture of Max's dad, Greg, with their service dog Zadie with Andy and Beau checking out the IPAD 2 that Max uses.
One of my favorite memories of the weekend has to be a friendship that I saw occurring between two young gals with ACC, Jessica, 13 years and Madeline, 12 years. My husband and I both looked at each other late into the day after observing the two girls and both recalled a memory from our trip to the national conference in San Francisco. There were 2 girls that were in their upper teens, that had met through the conferences of the NODCC and had become such great friends over the years. They had ACC in common and they had obviously built a strong relationship as a result. Andy and I both recalled how inseparable they seemed at the conference and how heart warming it was to see them together. We watched the very same thing happening this weekend and I hope their parents don't mind that I shared this story. I just know that as a parent of an ACC child I've heard so many stories about how hard it is for these kids to develop and maintain friendships. I worry so much about Beau not having friends or feeling isolated because he is "different". Watching these young ladies come out of their shells and have such a fun evening made the whole planning of the event completely worthwhile.
One of the other topics that came up (once again thanks to Max!) was the service dog. Max and his dog Zadie were a huge hit this weekend and it was great to see a service dog in action. We have thought quite often about the benefits of a service/seizure alert dog for Beau. Heaven knows it might allow me to get better sleep at night! Below is a great picture of Max, his dad Greg and Zadie.
The next morning we slept in a little bit, trying to recover from our busy day the day before. We decided to visit the Como Park Zoo on our way back home. We met up with the Prusi family at the zoo and enjoyed 2 hours of animal watching and talking about our two young sons with ACC.
I can't thank the great ACC families of Minnesota enough for welcoming our Iowa family to the state. In my mind it was a huge success and each year can only get bigger and better. Next time, you Minnesotans may have to come south and visit the great state of Iowa!
This thing called ACC has brought all of us together; people who never would have met otherwise and for that I'm grateful. I've met some wonderful families not only at this event but when we were in California. Each time we do something like this I feel blessed and re-energized to do more to help those affected by intellectual disabilities.
I will end this with one of my favorite poems. It was written by Edna Massionilla and is titled Heaven's Very Special Child. After meeting such great parents it only seems fitting. The main thing I want to get across by using this poem is that God chooses great people to be the parents of special needs children. We were chosen for a reason and are so lucky.
HEAVEN'S VERY SPECIAL CHILD
I arranged for our event to take place at the Radisson by the Mall of America. We were able to get a meeting room there which gave us the view of the huge indoor water park at the hotel; the Waterpark of America. We set the room up with some informational materials and a play area for the kids with some of Beau's toys. We had a buffet style lunch along with some goodies for dessert.
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| This is a group shot of all of the families that were in attendance this weekend. What a good looking group! |
After our time ended in the conference room, some of the families stuck around and played in the water park. It was another opportunity to talk, play and laugh. Beau loves water, so he had a great time. If you combine that with cute girls, he was in heaven. I think his face in the picture below says it all.
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| Beau with his new friends from the NODCC gathering. |
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| Owen, Maren and Beau at the zoo. |
This thing called ACC has brought all of us together; people who never would have met otherwise and for that I'm grateful. I've met some wonderful families not only at this event but when we were in California. Each time we do something like this I feel blessed and re-energized to do more to help those affected by intellectual disabilities.
I will end this with one of my favorite poems. It was written by Edna Massionilla and is titled Heaven's Very Special Child. After meeting such great parents it only seems fitting. The main thing I want to get across by using this poem is that God chooses great people to be the parents of special needs children. We were chosen for a reason and are so lucky.
HEAVEN'S VERY SPECIAL CHILD
A meeting was held quite far from Earth!
It's time again for another birth.
Said the Angels to the LORD above,
This Special Child will need much love.
His progress may be very slow,
Accomplishments he may not show.
And he'll require extra care
From the folks he meets down there.
He may not run or laugh or play,
His thoughts may seem quite far away,
In many ways he won't adapt,
And he'llknown as handicapped.
So let's be careful where he's sent,
We want his life to be content.
Please LORD, find the parents who
Will do a special job for you.
They will not realize right away
The leading role they're asked to play,
But with this child sent from above
Comes stronger faith and richer love.
And soon they'll know the privilege given
In caring for their gift from Heaven.
Their precious charge, so meek and mild,
Is HEAVEN'S VERY SPECIAL CHILD.
by Edna Massionilla
December 1981
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Parents Regional Outreach for Understanding Down's Inc.
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