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Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

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Chestnut_ mare

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Hi I'm very new to both forums & epilepsy.I have a 20 month old son who was diagnosed with epilepsy mean he was 6 months old using video EEG. Since then we have tried a number of drugs but have had no control of the seizures. We also now have the complication that one the neuro drs don't think all "seizure" like movements are seizures.
Any way thats a little about "us"
 
Welcome CM

There are a lot of parents here that I'm sure can relate to your situation. I've had epilepsy all my life so I've been on drugs most of my life too. I know I need them but I'm so tired of them that I"m paying more attention to my living habits & researching other types of treatments. http://www.coping-with-epilepsy.com/index.php?p=alternative-treatments

I would recommend you check out the nursery. There are lots of parents there but check out the rest of the nooks & crannies on this site. I would recommend keeping an eye on the "history book" in the library of this site too so that you can see other peoples experiences with alternative treatments.
 
Howdy Chestnut Mare, welcome to the site.

Definitely check out some of the resources Epileric mentioned above. Lots of good stuff and support available here.

It sounds like your neurologists aren't all on the same page -- can you get them to explain what they mean by non-seizure movements? And why they think that? I'd encourage you to ask a lot of questions of your docs -- they're working for you!

Best,
Nakamova
 
Welcome!
I hope you get some of your questions answered here, and that you find info that will support you when you discuss your son's situation with your doctors.
 
Something else

to consider if he's getting to a point where's going thru a lot of meds is to possibly use the ketogenic diet. It may not be an easy thing, but many people find success with it. Look at the Nursery...there are parents in there who use it for their children, one of the supermoderators, DutchMom, can give you a lot of really good information about it....

BTW, I wanted to welcome you to CWE. I'm sure you're going to find plenty of friends here, lots of information, and plenty of support, too. Feel free to vent when necessary. We'll be here.

Take care,

Meetz
 
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Hi CM, welcome to the forum. :hello:

By any chance, did the onset of seizures coincide with a switch to any particular baby formula? There is some overlap with food allergies (soy, dairy) being complicit in celiac problems and seizures being a downstream result (so to speak). In any event, something to consider.
 
I would like to welcome you Chestnut Mare to this wonderful support group. As a parent and grandparent of a child with E, I have learned to go with what I call my mommy instinct and change doctors when I feel that they are not listening to me. We know our children the best and I feel that we need to take charge of our children's health care and if you are not happy with what the doctor is telling you, it might be time to look for a new doctor.
 
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