Update on us... so very frustrated

[Staceypt]

Our son is autistic (PDD-NOS) and was diagnosed with epilepsy in January of this year- partial seizures originating from the frontal lobe. Since then he has been on Keppra, then Keppra and Trileptal (seizures were worse), Keppra with Lamictal (allergic reaction), and Keppra XR and Zonegran (no change). We are now switching from Zonegran to Topamax. I am BEYOND frustrated and upset and stressed out - nothing seems to be working for him. I am just praying that the Topamax is what works for him.

So, starting today we are weaning him from the Zonegran, and adding Topamax. We are keeping him home 1/2 days from school as it seems that a lot of schoolwork and stress on his brain increases his seizures. We are also getting a 24 hour EEG/observation scheduled with the eptileptologist at CHOP. As far as they can tell there is not one specific spot that the seizures are originating from, but they want to get a better look over a longer period of time.

I am so frustrated with this whole thing. I can't believe the difficulty we are having in finding a med that works for Jason. I'm getting nervous because I feel like we are really running out of good options and we are starting to get into drugs with a lot more side effects than I want to deal with.

Anyone have an experience like this where you can't get control of the seizures?

hoping, hoping, hoping the topamax is the answer for him...

 

[MuayThaiFighter]

Well first off I am sorry you are dealing with the frustration of trail and error with the drugs. Most of us have been there or still are trying to find the right solution. From what I know Topamax is pretty good for seizures in the frontal, temporal area. Best of luck to you and lets hope that Topamax will yield better results for you son. Poor little guy, he should be able to just go out and have fun, instead of dealing with the pill fiasco. Best of wishes.

 

[Fedup]

Staceypt

This is not an easy time for you, so try to sit down with a cup of tea/cofee and think. You would not have things any other way, life is never fair. As for the drugs, well we have all gone through this and some still are, my parents went through the same thing as you. You might want to accept the fact it could come down to it, medication/drugs may be the only choice you have. Frustration, dificulty, confusion and the rest are not easy cope with and most of us here still go through it. There are parents here who can help you properly and you can look in the nursery as well. I wish you the best of luck with this problem and hope you get it sorted soon.

 

[LisaBee]

Hi! My daughter had seizures originating in the frontal lobe (nocturnal). Keppra alone did nothing. Now we have added Trileptal, seems to help but no total control yet, still seizing. I hope the Topamax works for your son. It is frustrating being patient, wishing and hoping a med works only to be disappointed when it doesnt but do not lose hope. There are SEVERAL med and med combos out there, just have to find what will work for your son. Hang in there!

 

[donnajane]

Hi. We are still on a search as to how to help my 20 month old. He is currently on Tegretol but still has lots of small what they think are seizures overnight and other issues during the day. He has a lesion on his putamen which we are in a process of wait and see. Another MRI is booked for Jan to see if it has altered, then regular ones until he is 10. I know I have been through the frustrated and angry stage as my son was just over 7 months when we first rushed him to the ED with seizures (they think he may have had seizures from earlier than 7months and they were just saying it was a bad form of refulz), we were told it was fine he would grow out of them nothing showed on the EEG. Yet his condition altered different seizures started luckily we have an amazing Nureo who is still on the quest, with us to help our son. He kept looking it took 5 EEG's before it showed he had slowing on the back of his brain, then the MRI which showed the lesion. Why it hadn't shown on his EEG was it is to deep in his brain.
He wasn't put on meds until around 14months old. We have good days and we have bad. I sometimes get scared when I see him struggling to balance and walk for 30 or 40minutes and wonder if I should rush him into the ED but I have learn't this part of his condition at the moment and sadly medication can't help everything. Even he is now learning what to do when this happens to "wait it out" Overnight he has lots of events and even the Nureo is confused why his medication isn't helping as much but our little man is such a trouper and is now learning to self settle after these events, we only go down and help him if he is really distressed and unable to settle himself as sadly no one knows if he may have these events overnight for the rest of his life or not so at the moment we are trying to help him live with his condition not let it rule his and our lives. I know at times it is really hard and seeing your child have seizures is quite confronting and you feel so useless but I now live by the rule there are 24hrs in a day and thankfully my little man is OK for most of those hours.
I hope you are able to find more answers to help your son.
Donna

 

[Fedup]

donnajane

I feel so much for you, just like the rest of the parents. I do not think there is anythink you have forgotten and that includes letting him lead his life, not epilepsy rule is life. I hope everything works out.

 

[BensalemAngler]

It is a very scary thing. It feels like we have no control. We are sick and pissed off as parents to see these things happen to our children. We get mad at other families who just go about their day not worrying, or constantly calling out to our children when they are alone in their room to make sure they are ok. We watch our kids like a hawk. We sometimes get scared to go places. It's not fair and we as their parent want to help, want to take their place, want to make it all go away. But we do what we can.

Have faith, faith in God, faith in our doctors, faith in our gut feelings. My son went through 3 medicines then finally one worked (No Jinx) We first attended St. Chris and my son was uncontrolled so my gut told me to move so we went to CHOP, and things have been better.

Strength and love

 

[KarenB]

I hear and feel your frustration. Our little Jon has gone through Keppra (didn't work), Topamax (did work for 3 1/2 years, then stopped working), Trileptal (didn't work and made him psychotic), Lamictal (oh yes, that darned allergic reaction), Depakote (didn't work and gave him high liver enzymes and bone marrow disease).

Then he started the Ketogenic diet, and that didn't work for 6 weeks, then it kicked in, and gave him complete seizure freedom for 11 months.

Now, it's not working again. So...now on Zonegran and Diazapam. They have stopped the tonic clonics, but not the tonics. One of them (Diazapam I think) is giving him hallucinations and manic episodes at night. The Zonegran is causing anorexia -- he refuses to eat most of his food.

About a week and half ago, we began working a little more with vitamins and supplements (like magnesium and fish oil) and that has cut the number of seizures in half.

I really need to hit something right now.

I pray the Topomax will work for your little guy. It DID work wonderfully for us for 3 1/2 blessed years, and he was able to be on a low dose with very little side effects. However, when it stopped working, the dose kept getting increased and increased til he was at toxic levels, and at that point, he lost his language (one of those sweet side effects).