seizures

[MrsRabbit]

DD began having seizures two weeks ago. She's had 3 that I know of. We had an EEG done that was abnormal and a CT scan was normal. She started medication today and we have an MRI scheduled for 2 weeks from now. On top of all her G.I issues and allergies this is just one more health issue.

Any moms have advice on a kid with seizures?

 

[Marleysgirl]

What medication have they started her on?

Andrew developed Infantile Spasms this time last year (at 8m actual), after hospitalisation and diagnosis he was put onto steroids (Prednisolone) which fortunately worked for him. I have heard that this was lucky, often the medication has to be changed a few times until the right one is determined.

 

[MrsRabbit]

DD is on Keppra. 1ml twice a day.

 

[k.mcmahan2010]

I'm not a mom of a kid with seizures but I had epilepsy when I was younger.

I was first diagnosed when I was 5 but never put on meds (Im not sure why?) and never really had seizures until I was 9 when I was diagnosed again and put on meds. The first one (tegratol) made me really sick so I was switched to Topamax and only had a couple seizures after that and usually one when I was over tired as that was a trigger. I out-grew the seizures by age 14.

I'm not sure how this will work with her being much younger than I was but after I was diagnosed the second time I learned to control my seizures most of the time by learning the warning signs. Usually I would get sick to my stomach, start to black out, extremely dizzy.

Hope that helps somewhat.

 

[jessr123]

Have they said what sort of seizures your LO is having?

My LO has infantile spasms which is developing into another type of epilepsy, although what we are not yet sure. He is on a wide range of medication and is delayed developmentally.

Have they asked you to keep a seizure diary, noting down the time, what happened, what your LO was like before and after the seizure and how long it lasted for? It often helps to build up a picture.

Also, as your LO grows obviously the meds may need to be altered so it is useful to keep an up-to-date record of their weight.

 

[meggabear]

my son had seizures when he was only two days old. it was due to a genetic disorder of blood clotting that got to the brain, he is fine and developing like a happy little 7month old, but he was put on phenobarbital and has recently been taken off of it all together. sometimes children out grow it, the best thing to do is be strong and if ever it occures be there and sooth them when the fit is done and call a childrens neurologist if you rlittle lady hasn;t had one assighned yet.

 

[MrsRabbit]

My daughter is now up to 5ml of Keppra a day 2 in the morning and three at night. She keeps having seizures although she's not had one since May 7th on the newest dose of the medication. We see a new specialist in June as her current Neurologist is at a loss as to why she continues to have seizures as her CT and MRI were fine as was her blood work.

We'll see what this new doctor says in about 3 weeks.

 

[jellybean83]

No advice for you but didn't want to read and run...Ive got Epilepsy and have full seizures as well as partial complex seizures and the thought of little ones having to have fits too doesn't seem fair at all...,.
I hope things get sorted for you soon xx

 

[TweetiePie]

My daughter has epilepsy and has been having seizures for 17months. She has been on lots of meds. Drop me a PM if you want to chat. I would rather not put personal info here

 

[MysticalGandy]

My 5 yearold Thomas has Generalised Partial Epilepsy, his seizures started at 8 months old, began with Febrile Seizures and then developed into Epilepsy.

His got worse when he started nursery, before he would have a few each month, it soon went up to 45 per day. Sounds scary (and it was) But try not to lose faith in the doctors, Toms Epilepsy is a lot better he goes weeks with no seizures now, so from 45 ish per day to a few a month again is fantastic.

Give it time, things will get sorted out.

Tom is on Topiramate and Ethosuximide ha also has a VNS fitted.

Im more than happy to talk to you (or anybody else) about epilepsy and what i have learnt over these 5 years.

I also run a Epilepsy Blog which you can find by searching "UK Epilepsy Blog" in google (I cant paste a link here i dont think)

Have a read of the blog, and drop me a message, hopefully reading about other peoples experiences will help.

All the Best Andy & Tom.

 

[MysticalGandy]

My daughter has epilepsy and has been having seizures for 17months. She has been on lots of meds. Drop me a PM if you want to chat. I would rather not put personal info here

Hey, would be good top talk to you to Tweetiepie the more the merrier, i like talking to other parents of children with Ep.

 

[TweetiePie]

I'm exactly the same I will message you when I can get on the laptop

 

[MrsRabbit]

Hello ladies!

DD was officially diagnosed with epilepsy earlier this week. She has complex partial seizures. We're upping the meds until DD stops having seizures she had several May 29th and one this past Friday. Hopefully we will get a handle on this soon. I'd love to speak to some fellow parents. I have found a few epilepsy or seizure disorder boards and they are inactive.

 

[fairywings]

My son had Migrating Partail Epilepsy of infancy and trialled 14 drugs with little effectivness on his seizures. I am suprised they started her on Keppra, they usually start with phenobarb and then phenytoin. There are more drugs they can try if the Keppra doesn't work. That is called refactory epilepsy and it isn't uncommon. Some cases never get diagnosed, they just seize and no one knows why. If a diagnosis is finally made they can give medication accordingly. Some types of seizure wont repond to certain anti- epileptic medicines like my son whose seizures were partial. They had to use drugs that responded to that. Regardless he could have over a hundred a day.

The neurologist can only go on clinical presentation. My sons tests were all normal too, apart from his EEG which was the only way to confirm it. But like I say most of the epileptic encepalopathies are undiagnosed. xxx

 

[Ilovehim89]

My 2 year old son has started having febrile seizures about 3 months ago. He has had about 3 since then. They are really scary. My son was not put on any medication. The medication should help your daughter. Stay strong, mama!

 

[AlenP]

DD began having seizures two weeks ago. She's had 3 that I know of. We had an EEG done that was abnormal and a CT scan was normal. She started medication today and we have an MRI scheduled for 2 weeks from now. On top of all her G.I issues and allergies this is just one more health issue.

Any moms have advice on a kid with seizures?

If its a single seizure & if that does not repeatedly occur then its not epilepsy.. So atleast this is not the case.

 

[fairywings]

DD began having seizures two weeks ago. She's had 3 that I know of. We had an EEG done that was abnormal and a CT scan was normal. She started medication today and we have an MRI scheduled for 2 weeks from now. On top of all her G.I issues and allergies this is just one more health issue.

Any moms have advice on a kid with seizures?

If its a single seizure & if that does not repeatedly occur then its not epilepsy.. So atleast this is not the case.

I dont think you read her post correctly - her daughter has had 3 seizures that she knows of, and an abnormal EEG. Yes one seizure does not make one epileptic, but two by definition IS/ does

 

[kimini26]

I have a nephew who is on keppra and wanted to point out that Keppra is not approved for use in children under 4 years old and that an increase in seizures are a potential side effect of Keppra. My nephew experienced a lot of "drop seizures" before his mother weaned him off of it for about a year before starting it back up.

 

[fairywings]

I have a nephew who is on keppra and wanted to point out that Keppra is not approved for use in children under 4 years old and that an increase in seizures are a potential side effect of Keppra. My nephew experienced a lot of "drop seizures" before his mother weaned him off of it for about a year before starting it back up.

I think it depends on the child. Keppra was about the 3th or 4th my son was on and it was one of the "better ones". He was on it after Carbamazepine with phenytoin IV. My son was on plenty that were not meant for children but it depends on the child and severity of seizure disorder. There are always anti-epileptic drugs that can exsasperate certain seizure types so they need to treat with relevent medication. It is all trial and error more often than not unfortunately.

 

[kimini26]

It is definitely trial and error. Unfortunately around here there is only one child neurologist and he insists on putting all children on Keppra. The one size fits all approach just seems so close minded.