abdominal epilepsy help needed

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jmcmillan

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My son is eight years old and we have been dealing with a severe case of abdominal pain and vomiting. He has lost aprox. 25 lbs in a year and is really suffering. He was diagnosed with abdominal epilepsy last may but he is not responding well to the depakote he is on. Our neurologist is the only pediatric neurologist around and he is very busy and doesnt seem to really take this seriously. I am at my wits end with this. I am literally watching my son starve to death and all the doctors will say is they cant find anything wrong with him. If there is anyone who knows a good doctor out there that can treat my son please help me. I am really in need of help right now. Thanks you
 
Hi jmcmillan --

Where are you located? You definitely need to track down a neurologist who will help.
 
Have you

considered putting him on a diet such as the GARD diet? Or the Modified Atkins Diet? Perhaps one of those would be of benefit to him. Have you checked the Library or the Kitchen for information? If not, why don't you check those out for information, I'll bet you can find quite a bit. If you get really confused, PM me, and let me know! I'll help you out.

Take care!

Meetz
:rock:
 
At the very least, the docs should consider trying a different AED medicine to see if it helps better than the Depakote. And I agree with Meetz, this may be a case where a special diet could make a difference.
 
My partner went through something similar as a teen -- he had pain and cyclical vomiting and abdominal pain for 6 months, which we now suspect was E, since no other cause was found at the time. He could only ingest liquid meal replacements for that time.

If you can find a liquid meal replacement your son tolerates well -- that could be a supplement for him in the meantime, until you figure out what's triggering his vomiting and pain. Try to avoid any replacements with herbal extracts, because you don't know what reaction they may cause.

From what I understand, foods figure very much in triggering abdominal E. You need to keep a careful list of what he has ingested every day, so you can figure out what foods may trigger the E (for my partner even small amounts of, rosemary, MSG, fennel, and any kind of pepper can cause him to vomit).

You also need to keep track of any pharmaceuticals you're giving him, because they can also lead to vomiting and pain (acetominophen/Tylenol makes my partner violently ill almost instantly, so does aspirin. Ibuprofin makes him ill also, but only after a few weeks of daily use).

I hope these tips help until you're able to find a new neuro who will take your son's health far more seriously.
 
There should be an epilepsy foundation where you are, search online for it. I called one here and thats how I got my awesome neurologist..they will not find your situation odd..and will probably be able to recommend someone with a great rep. They will also probbaly point you in the direction of some local support groups also. I hope this helps. I found my neurologist in a crisis....I had left the ER in having simple partial seizures all night, was in such distress and called up the foundation .. got her number she took me right in away in the morning.
 
Thanks for your help. I have looked at some of the information and I am about to go get a book on the LGIT diet. I am so willing to try anything so we will see if this helps. The only pediatric neurologist in the area is very overworked and he is the one I have been taking my son to. I have looked in North Carolina the foundation and support groups are located in Charlotte, which is 4-5 hours away from me.
 
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I hope the diet does the trick for your son. Maybe your current pediatric neurologist could recommend a colleague for a second opinion -- even if it's someone far away, the visit could be worth it.

Best,
Nakamova
 
Jmcmillan - I too have been taking notes on this diet at least to show my daughter how her days diet could possibly be out of balance, and causing problems at certain times of the month.

I have not located any support system either. I typically wing it, but that has not been as successful as I would like it to be.
 
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