What does it feel like?

[1022ngs]

Hi, my 3 year old daughter had her first seizure 6 months ago (grand mal) and has not shown much progress even with three meds twice a day. She was having 25-30 drop seizures a day for awhile when just on keppra. We added topimax next in conjunction with that. No improvement. Added depakote about a month ago in the mix for a total of 3.

I am close to taking all three meds myself just so I can KNOW how she must feel all day. I super worried that these meds are helping a little, but hurting her alot. Basically if she feels more drowsy, ill and sore than she's currently telling us then I want to quit the meds.

Has anyone here been in this situation and dropped all meds to start the ketogenic diet? Anyone recommend ketogenic? Do you continue meds with that diet or? We're about to go that route, found this board today and am excited to read and talk to people here.

 

[Silat]

Don't drop the meds, and don't take them yourself! If you're worried about the medicine, consult her doctors but under no circumstances should you ever take them yourself. The meds are designed to treat her problems, they interact differently with someone who has a normal nervous system and can be very harmful for you to take. Plus, 2 of those are medicines that build up in the blood, they don't have an immediate effect and can take sometimes as long as two months to reach the correct concentrations. They also start the doses small and build up, for that very reason, so taking a full dose can be very dangerous. Do not take them yourself, and bring up your concerns with her doctor. And most importantly, if she's at a full dose, don't drop them! A sudden stop in medicine can shock the body into even worse seizures, so it's very dangerous, especially for a small child. If you want her off the meds, you'll have to slowly reduce the doses until she can drop it entirely, which to do properly you'll have to consult her doctor about.

Has she had any tests done? And if so, what were her results? EEGs, MRIs, CT scans, and such....

I haven't tried the diet myself, as I have my own diet I adhere to, however I would not recommend taking her off the meds to start a diet. Diets, also, take time to take effect. The metabolic system of the body has to adjust to the new diet, and the vitamins, minerals, and such in the diet need to build up as well if there are low concentrations of them. It's not an instant cure-all that can make someone medicine free over night. It takes time and consistency.

If the diet interests you, be sure to do your research, and again bring it to her doctor and get their opinion on it. For some people, it really helps them a lot, for others it doesn't affect them at all, it really depends on the reasons behind the seizures, which is something you'll need to consult her doctor about.

 

[epileric]

I agree wholeheartedly with Silat:

Don't drop the meds, and don't take them yourself! If you're worried about the medicine, consult her doctors but under no circumstances should you ever take them yourself. The meds are designed to treat her problems, they interact differently with someone who has a normal nervous system and can be very harmful for you to take.

As for the ketogenic diet, there is someone on this site whose child has had good results using it.

However it is the type of diet where someone has to be carefully monitored. I would not recommend trying it without the help of a medical individual.

Also, I moved your thread to the foyer so that everyone can welcome you here to CWE.

 

[julie wishes]

I can imagine your pain. Im so thankful my kids werent in the car wreck that caused my seizures. It must be so difficult to dose her everytime. After my wreck 11 months ago, i didn't feel like myself one day in all that time. I didn't understand why until recently I was diagnosed with seizures and started on keppra. Despite its side effects, I call it my miracle drug. I feel like myself again. The seizures feel awful. Just plain awful!

 

[Cint]

Being on three AED's is quite a lot for a three year old. I once took three meds and felt like a zombie, wanted to sleep all day, didn't feel good or feel like myself at all. I now take 3000 mgs. of Keppra (which is a high dose) + 200 mgs. of Topomax. The Keppra still makes me tired and I do take and anti-depressant along with it as Keppra can/does cause anxiety, depression.

And as Silat and Eric both said, don't drop her meds! Years ago, I did that when I was only on one med and I went status, ended up in the hospital. And if you start on any meds without titrating, you could end up in the hospital, too. Don't go there!!

Is your daughter seeing a pediatric neurologist? I wish you the best.

 

[Nakamova]

Hi 1022ngs, welcome to CWE!

I understand your worries about the side effect the meds may be having on your daughter. Most of us here have to calculate what an "acceptable" level of side effects is in order to have seizure control. It sounds like you should have a discussion with her pediatric neurologist to review what the meds are accomplishing.

Three meds does seem like a lot for one so young, so do think it's worth trying the dietary option. You might be interested in this thread: http://www.coping-with-epilepsy.com/forums/f32/neurofeedback-rebeccas-story-2733/

Best,
Nakamova

 

[1022ngs]

Very sorry I have not replied until now. My daughter is having a really hard time. Since the 4th of July she's been having about 30 up to 50 seizures a day every day. 6 days prior to the 4th of July she had 6 WONDERFUL days of very minimal seizures. It was great! However, now my wife and I are beside ourselves and can't seem to get ANYTHING out of our neurologist except "up the doses". My wife wants to search hollistic options and scheduled our daughter to visit a chiropractic tomorrow. Anyone have any experience doing this or other options that neuro's are not offering for treatment? Who here recommends hollistic options? How about the ketogenic diet? Anything else? Thanks so much for any help.

 

[vallygirl]

It sounds like you need to find a different neurologist that you can trust. I don't have much experience with holistic options, so I'm not going to say they don't work at all, but I don't think they are typically an adequate replacement for a neurologist, especially with the severity of your child's case.

 

[Nakamova]

You can read more about using a dietary approach here http://www.atkinsforseizures.com/ and here http://www.atkinsforseizures.com/keto.html

 

[MaryK]

Hi and welcome to CWE.. Do you live close to a teaching university? Some of the finest epileptologists practice within a university system and often have the newest equipment to help diagnose and find the correct drug combination. Also, since you are interested in trying the ketogenic diet, that could also be addressed at a teaching university. Take care and keep us posted.