Another update on Andrew

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Hi everyone, I thought it was time I post an update on how Andrew, now 6 yo, is doing. I visit here often to read, but because of my lack of experience with E myself, and my son newly diagnosed, I find I don't have alot of advice to offer. I'm hoping that changes with the more experience I (unfortunately) get. At least here in the nursery forum I hope to be able to offer other parents advice and support when needed.

Anyways- a quick overview, if you haven't followed our story from the beginning, just scroll down a bit and read my previous posts if you're interested. Andrew was diagnosed with BRE Feb 2. Total seizures that we are aware of is 6. 4 daytime-including 1 set of status epilepticus, starting as focal, then secondarily generalizing, lasting almost 90 min, and 2 while sleeping. He's on valproic acid. He's seen 2 increases, after seizures. Since his last increase about a month ago, he hasn't had anymore seizures. Hopefully this means they are controlled at least for now.

After his diagnosis, we put 2+2 together, and red flags started going off when we realized that we hadn't seen any real changes in his development in almost a year. Since about last summer-around the same time we witnessed his first seizure. So I talked to his kindergarten teacher, and speech pathologist. Both felt the same way. I then went ahead and had his gross and fine motor skills tested by a physio, and occupational therapists. He tested behind in muscle strength, coordination, balance, and all fine motor skills-just as we had suspected. All behind by 1 to over 2 years delay-mostly he tested as a 4 yo, not at the 6 yo level he should be at. I realize it could be worse, as his delays are really only now becoming noticable. His behavior is getting harder to control as well as he's very impulsive-dispite our being very firm with him. Something I've never seen in any of our my other kids. It's very heart breaking as a parent to spend hours upon hours, trying to get him to learn at least a few sight words for reading (a, and, they, the, them, he, she etc) and he's just can't seem to pick any of them up. He goes from being able to write his first name one day, to not being able to write it the next day, and then write it the next day, but with mixed up, and missing letters the following day, back to being able to write it again. It really is heartbreaking. I don't think I would go so far as to call it regression, but he's definitely not really progressing, if that makes any sense.

Our app't with the Pediatric Epileptolgist is finally happening this Wednesday. Even though it's only been about 2.5 months since I requested the referral-it seems like we been waiting for eternity. I'm hoping the Dr will run further testing on Andrew to see if we can find out why this is happening. If it's just a more severe form of Rolandic Epilepsy, or if maybe he has ESES. I'm thinking at this point it's not severe enough to be ESES, but I'd feel much more confident if the PE could confirm that after an overnight EEG, and any other testing he feels necessary.

So there you have it. Not exactly a quick update. Sorry! I'm always full of hot air! If any of you have any advice to offer me, especially with our upcoming specialist app't, I would really appreciate it. :hugs:
 

masterjen

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Hi, neighbour!

First off, never be afraid to offer your input, even if it feels like you don't have enough experience yet. If it makes you feel better, you can start your post with "I'm new to epilepsy, but my thoughts are . . . "

So sorry your son and you are having a rough time. Perhaps it is possible that the valproic acid is not the best medicine for him. If you have noticed no regression before the start of the medication, it sounds suspiciously like it may be the cause. One thing, though, it does sound like he needs some one on one teaching with a special ed. teacher to help him (and you) through this difficult time.

Good luck with the epileptologist, and I hope you will post another update as to how the appointment went.
 
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Thanks neighbour!
His lack of progression with development started around the time we witnessed his first seizure, so last summer, many months before he started on valproic acid. It just took a while for him to fall behind, and for my red flags to go off and to put it all together. He seemed tired when we started him on it, and emotional. I definitely had some apprehensions for a while at first...but since it's been about a month since his last increase, he seems to be back to his old self really, which I am relieved for. I will definitely be discussing it with the PE though, and see what he thinks since I know it slows down the brain, and can cause dizziness etc.

I will post an update after Wednesday!
 
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