This week.
Things have just been getting worse it seems. We're still gung ho on trying to get out and live a little. We even went on an adventure to IKEA and had gluten-free pizza at a restaurant! Hooray! I'm tenatively planning on taking Cole to a birthday party this weekend...I know, could be a total disaster, (good thing the birthday boy's brother has DS). It looks like we are doing fabulous on the outside and I'm not going to lie, being able to spend time together outside of our home has been incredible. Seizure-wise though, things have been rough.
Brian and I have noticed some big improvements since the start of depakote a few weeks ago. Cole's speech has been more clear, he has enhanced motor skills and his overall tolerance for being overstimulated has been increased. The latter has been the biggest pay-off. We've been out and about again, within reason! It feels like going back to being housebound would be equivalent to someone handing us a pair of prison issue striped coveralls and saying with a pitiful look, 'Good luck in there". Cole has been, on average, happier and we have too for the most part.
The thing that really sucks (pardon my French) is that his seizure activity has been through the roof! There has been such an increase in myoclonics especially. It seems like each time I look at him, he is jerking. I'm shocked that he isn't more worn out, because when he is sleeping it is like being next to a machine that is programmed to twitch. I have not even attained a good shirt for the dog this week because he has constantly smelled like a seizure and would have nothing "normal" to compare it to. Well, normal in Cole's world. The whole process of scent work depends on comparing the smell of "seizure Cole" and "normal Cole" so that the dog can tell the difference and know when to alert. I have a feeling that if we had our four legged friend this week, they would be working hard. Something like our friend Hobo did with his girl yesterday. He wouldn't even go outside for a potty break. Sweet Hobo...we love him! I have given Cole Valium or Diastat every day this week for clusters of partial-complex and myoclonics. Every day. It almost transcends from rescue med to daily meds, just at random times. It's not when he wakes up, or even when he is getting close to needing another dose. There is no peak that I think changing to giving the Depakote three times a day would fix. It is an all-day, every day occurrence.
So the question is, once again, what do we do? He IS having more seizures on this med. Strange as it may seem. Yet, there have been improvements related to controlling the sub clinical seizures, as evidenced by his speech and motor skills. Do we stay on Depakote for a little longer, upping the dose and trying to get therapeutic? Do we just back off now before it gets worse? Do we try something else? Do we go back to just Keppra and see its efficacy without the diet? We can't jump back on the diet train right now since Cole has obviously shown that he is not going to stay within its boundaries and still eat by mouth. Am I ready to have a child that is tube fed daily? I think that I know the answer on that one...nope, at least not right now when he can still take things orally. We also know that we are not ready for Stiripentol yet. The price is one thing, but learning from other parents we also have found that it can lose its efficacy over time, just like all of the other drugs. Cole is only 3, I don't want to use my Ace in the Hole yet.
So many questions, and no clear answer. I would love to hear what you think. Now I know that over 200 of you check this page out daily, sometimes more. Then again, maybe Google Analytics is lying to me and there is just some bot set up in Indonesia that visits my page every half hour or so :) Please, come out of the woodwork! I think that you have all fallen in love with Cole too and know that a lot of you have been in similar situations. I'm just at the end of my rope right now when it comes to meds. My brain has slipped back into the confused haze and it is fighting back most at night. I'm lucky if I stay asleep for more than 20 minutes before I wake up again with a racing heart. I really just want what is best for him, but there is no clear answer in sight.
Subscribe to:
Post Comments (Atom)
poor sweet cole. and poor you parents. that does suck. We are on depakote too and it works pretty well for us. We noticed an increase of some abilities in the beginning of depakote too. How long has he been off Keppra? When we started weaning dezh off phenobarb she started having WAY more seizures than normal. The dr said we needed to stop weaning for a while. So I am wondering if perhaps it isn't the depakote that is affecting him but the lack of keppra. Maybe more time would solve this. What if you went down on depakote a little just to see how he would do? I dont know much so perhaps don't listen to anything I have said. I just want you to know Im thinking of you all. I hope this improves quickly!!
ReplyDeleteYou know I know next to nothing about seizure meds, but I love you.
ReplyDeleteNolan has had simliar cycles...not on Depakote (we could never get him to a therapeutic level on that...despite tripling his average daily dose while being in-patient - finally, just abandoned the drug). Nolan has done it when he has been toxic and/or tolerant/addicted to his rescue drugs. He would essentaily "withdraw" between each dose of rescue or maitenance drugs. Whish then required controlled withdrawal.
ReplyDeleteWe are now tube feeding most of Keto, allowing him to eat what he wants of the meal and then blending the rest so that it can be tube fed...you can blend almost anything;)
Offers some relief, but, certainly not seizure freedom...but, then again, we are still weaning lots of meds...so, we will see.