I think Im losing my mind ....

[WorriedMom]

My son was diag. with E at 4months of age, and its been nothing but a wait and see what happens next game with him, we have tried every drug available, the ketogenic diet 2 times and VNS therapy, to no avail, and within the last 30 days he has started a new weird seizure that no one seems to be able to explain..
he does this constant twitching his arms are mostly involved with some facial tremors that he has never had before, he becomes very disoriented, loss of bladder control and just very "strange" .

I dont know what to do for him and these new episodes are very concerning to me, he has myoclonic epilepsy, absence seizures and tonic clonic and staring , Has anyone else ever had these facial tremors with the myoclonic jerks ?

Im at my wits end, he has been to so many doctors and no one seems to be able to tell me a darn thing, I know that when it comes to the brain a lot still isnt known and im ok to a point with that, but nothing and i mean nothing seems to work for him

As a parent i want to fix my child and not see him suffer and struggle like this and all i can do is sit back and watch him , If anyone has any advice i would very much appreciate it. I really think Im going crazy , but at the same time im trying to be very strong and supportive of him so he doesnt freak out .

Oh i should mention his EEG showed seizure activity every 4-5 seconds. he has thousands and thousands of episodes daily.

[speber]

I really don't know what to say other than I hope you can realize from this forum that myself and many others are on a CONSTANT LOOKOUT for some kind of cure\therapy\relief-tactic for you and everyone else who is so burdened!

Please keep looking for answers as you are doing now...something is bound to help!

Did anything at all seem to provide relief?....even in the slightest? Sometimes a little hint of relief can put you on the right path to BIG relief!

Take care of yourself too!
Spencer

[Bernard]

Hi WM, welcome to the forum.

How old is your son now? If he is old enough, I'd recommend looking into EEG neurofeedback to help normalize the brain activity. It's not a miracle cure or short term solution, but it can offer significant, permanent (or at least long term) improvements.

[WorriedMom]

Ryan is 11 now, like i said been fighting with E since 4months of age. We tried Depakote and it worked until his bloodlevels got where they needed to be. Keto diet worked for about 4 days after we were sent home from the hospital the first time and then about 2 days the second time. He is on Clorzapate 7.5mg now 2.5 pills a day 2X a day. And it seemed to help at first , but now there are these weird episodes that i attempted to explain earlier in my post.

Im not sure what EEG nurofeedback is , Would you mind explaining that ?

Im here because im sure we are all looking for hope/cures/support etc. And i thank you all for such kind comments back to me , Im sure that im among friends here


Im just very concerned about these new "seizures" he is experiencing. with these FACIAL TREMORS !!!! I mean honestly WHAT IS THAT ???? he looked like Droopy the Dog that old cartoon with the basset hound sagging eyes and his eyebrows just jumping up and down on his little face. His speech was slow and he was completely out of it, he had "stroke " hands , just sorta balled up by his sides and he had no grip. He wet his bed and didnt even realise it and his arms were just literally jumping up and down almost like he was trying to shrug, but really fast over and over and over again. His balance was off and he said he was feeling really weird.

So if anyone knows what might cause the facial tremors .. I would be very interested to hear , thank you again

[RobinN]

Hi WorriedMom -
My daugter is 16 and having Tonic Clonic seizures. Another one today... two this week. It is that time of the month for her.
It is very heart wrenching to see your kids go through this.
Welcome to CWE. I am sure you will find some great reading material. Wander through the different rooms and ask questions where you see something that interests you.

The EEG Neurofeedback link is at the bottom of Bernards post.
Check it out.. I have been.

[epileric]

Hi WM & welcome. I know during a seizure only my left eybrow does the little dance you described but I can't say what causes it, I just think it's part of my seizures.

As for neurofeedback, I'm pretty interested in it myself. Here's a link to a previous post on it

EEG Neurofeedback

I'm also relatively new & just discovered I can use the "search" button at the top to find any topic I want.

[WorriedMom]

i suppose im lucky i grabbed the camcorder this time and taped him , got some good footage for the doc. and zoomed in really close on his eyebrow dance and then his arms and hands, who knows maybe * cross fingers* they will know what is going on when they see it and not just hear me attempt to discribe what is going on

[speber]

Good job!...every little bit of info will help!