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."
Oh Amanda, as I read this I have tears in my eyes. I am certainly lifting Beau up in my prayers! You and your family as well. I know too well the drain, financially, physically & emotionally the hospital & a sick child can be. I pray the MRI will give some good incite for the docs & they can give you some hope in the near future. I will be praying. Really I will be!
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