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

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!!

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. 

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!!

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.

Here's Beau in 2008 as a monkey!

 Here's Beau in 2009 as Yoda!

 Here's Beau in 2010 as Batman!

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.

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. 

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......