His last EEG results is a good place to begin. We went to Sacramento in April to see Dr. Chez. We visited overnight at the hospital to do our EEG there. It can be hard coordinating between an out of area doctor and our hospital here. So, we opted to just do it all there. We tried new medications because we HATE keppra (and that's an understatement). I tried it again for Dr. Chez, but for all the reasons I hated it, we took him off. Life has been better with out keppra!! He is now on 12.5 mg clobazam at night, 10 mg Revlamid every other day (a drug that is supposed to have similar effects as steroids, but with out the nasty side effects), and a lot of depakote (can't remember exactly how much).
So, the results were improved, but still a slight right temporal seizure spike that is NOT constant and very sporadic. Dr. Chez called it a benign seizure that can often be seen in normal kids. His only concern is that it will turn into the constant seizure spikes of Landau-Kleffner or ESES. So, we have to keep Dray on his meds...ugh! He was ALMOST two years seizure free when that little right temporal bugger showed up and now we have to keep him on meds. Breaks my heart. I just sometimes wonder what he would be like if he was on no medications. Would he have more of an attention span, more energy, would he be happier? Who knows...and I shouldn't bother thinking about it.
So...we will go back to Sacramento at the end of August, and check again. You have to stay on top of it. Todd and I always say that we are just fighting the good fight until he hits puberty....so there are many more years of battle to come.
This fall will be 3 years with an almost cleared EEG. His language is improving, but it is slow. It's like he is close and sometimes you may not notice all the problems because he talks pretty freely and sometimes won't be quiet....but, there are BIG holes everywhere in his language. I would say his biggest problems are word finding (he tends to stick to words he is very familiar with), abstract ideas/concepts, memory, following complex instructions, story telling, and catching on and understanding the "small talk" and casual language that other kids engage in.
Which leads to my biggest challenge this summer...SCHOOL....UGH again!!! Up until this last year he has been in the right place and had the all the right supports to get by. He has done ok, not great, but ok. He had a teacher fluent in ASL and his own class room aid fluent in ASL and there just to help him. First grade was a challenge, and I think it changed him, not in a good way. He has started saying he's dumb this year. Which is hard to hear your child say. We try to explain his situation, so that he can understand why he struggles, but it's so frustrating to him nonetheless. So, we are off on a journey to find new supports, tutors, and a new school situation, if necessary. He was at a private school and We have been looking into EVERYTHING for next year. This is what he needs: small class size, an aid, lots of visual aids/supports, explicit instruction and one on one tutoring/help. The school district might be able to offer some of this, but of course, in a different city. We just finished a bunch of testing (so much fun) to get his IEP and find out what services they can give him. They have already told me he can't have an aid. I have found two private schools that would work. Both of them I would hire an aid to go to school with him. Luckily, our state offers a special needs scholarship to both of these private schools. We have found a reading recovery tutor to help him progress in reading and writing. He is a fairly good reader, but his fluency is terrible, and he has holes in his understanding of syntax. His writing is terrible. We also hired a math tutor because he struggles to keep up, and again, there are so many holes in his understanding of math. Like he can do some addition/subtraction, but cannot count to 100 or county by 5's. There are lots of problems like this throughout his schooling.
So let's do some math right now: how much money do you spend on two different tutors, occupational therapy, speech therapy, hospital stays, medications, and a neurologist that is a plane ride away? You do NOT want to know. Let's just pray that we don't have to pay for private school this next year...yikes!! Okay, I'll throw in another math problem...for fun. How many hours do I spend at all of these appointments? Answer: at least 10 hours a week of appointments. Oh. my. goodness. When I say that out loud it seems crazy!! But, knowing that your son with serious disadvantages, maybe just maybe might have a chance at a real life, if you help him enough... that is priceless!!
On a positive note. Dray swam in a meet the other day. He has some struggles with coordination, stamina, and focus. But, with all that...he did SO good!! He won 2nd place in breast stroke, 3rd in back stroke, and 1st in free style. Yay!!! He was so proud of himself. Just trying to keep it positive!!
