New user and need some advice?

[soulslayer]

My son is 9, was diagnosed with generalized epilepsy at age 3, autism 2 years later at age 5. he's had all types of seizures, petitmal, grand mal, atonic, myoclonic, absense...etc.

We've recently put him on a gluten free diet (about 3-4 weeks now) and his seizures have tripled...instead of getting better.

I cannot find any information anywhere on why this would be. Does anyone have a clue? he's currently on day 4 of myoclonic status...repetitive speech, tics, etc..you name it, he's got it. No medication adjustments have been made...only diet. Prior to diet modification, he was seizure free for 3 weeks at a time, and then only a nocturnal grand mal or two in a row.

Can anyone help?

 

[Silat]

Is he allergic to something your replaced the gluten with? Only thing I can think of as to why things would get so worse, so quickly...

 

[epileric]

Despite the gluten free diet being popular the evidence that it actually works is very weak.

A 2008 literature review concluded that, "From the evidence-based perspective, there is conflicting evidence whether there is or is not an association between coeliac disease or auto-antibodies and epilepsy. As yet there is no compelling evidence that there is a causal relation. There probably is a specific syndrome—coeliac disease with epilepsy and calcifications—which is rare and perhaps geographically specific."[4]

http://en.wikipedia.org/wiki/Gluten-sensitive_idiopathic_neuropathies#Epilepsy

I know when my eating habits are disturbed or I go hungry for a while that I am more likely to have a seizure.

Personally I would recommend the ketogenic diet but I would suggest you do it under the observation of a medical professional since it has to be very carefully monitored.

 

[soulslayer]

We didn't replace gluten with anything except veggies and fruit. We've just eliminated it.

We tried ketogenic years ago but it didn't work at all. Just made him sick too.

I swear I think my son is wired completely backwards...everything that happens to him is completely opposite of what they tell us to expect.

 

[Fedup]

soulslayer

This is not easy on you or your family, the thing is you may not have reached a level of drugs which suit him or to much, then again it could be because you changed his diat and lastly it could be a combination of everything.Can you think back to how long ago you started this diat that is started to change things, now you need a diary or copy book which ever is closest, start writing things down you changed, now try and remember what you changed when the seizures started to get worse, or did you give hime any other medicin for anything, you have to try and keep a record of every thing that happens, dates,times ect, exampel me, two months ago I was having sunday dinner and a drink of orange with it, this was normal nothing changed, then I had a seizure, fairly bad (but not that bad), next sunday dinner again only when we done the shooping we bought 7up because there was no orange, then on tuesday I was out for dinner and had orange, went home and had a seizure, get what I am trying to say, I have now found out I can no longer drink orange and to be on the safe side any drink that has orange, this may not help you and both Silat and epileric make very good points,sorry hope this is some help.

 

[Nakamova]

Different diets can affect different folks...differently. It seems like your son's reaction indicates that gluten wasn't an issue for him. There other diets to try -- Low-Glycemic,or Modified Atkins -- if you are still game to try. But if dietary issues aren't triggering your son's seizures, then a change in diet won't necessarily help with seizure control. Have you had him tested for any deficiencies or metabolic issues? Perhaps supplementing with certain nutrients would help.