New Member

[justinekno]

I have been reading this board for quite a while and am really amazed at how much you guys know! I feel like I need a chemistry degree to understand any of it. My son is 9 yrs old and has had an eye tic since he was 3. He also has a history of petit mal seizures (and a febrile one shortly after a series of vaccines) but his last two 24 hr EEG and a couple of shorter ones have been normal (done two years ago). He has not been on medicine for almost three years. Apparently the area of the brain that was affected by the seizures is an area which develops towards puberty and that is why these types of seizures are outgrown. One thing to note - the eye tic and the petit mal seizure were the same characteristic - blinking. You couldn't tell which was which unless he was attached to an EEG machine. The neurologists tells us that the eye tic is something that will go away and is common with kids who have the kind of history my son has. We have a family history of seizures (I had a febrile one at 2 yrs old and my sister had grand mal ones as a child, outgrew them and they returned when she turned 40). We also have a family history of migraines and intestinal disorders. We have no history of tic disorders that I know about.

 

The interesting thing was that if my son got a stomach bug and didn't eat, the eye tic would go away, start him back eating and it would return. We started to think it was food related - even the neurologist suggested keeping a food diary. Even our pediatrician agreed. This started us down the path we are now traveling. We started first with the Feinghold Diet and we do seem to see more blinking when my son eats sugar or alot of fruit (he loves fruit). We have started seeing an integrative dr who did some recent testing. My son's IGg testing showed 33 sensitivities and his stool testing showed bacteria (enterobacter cloacae) in the gut (we have constipation issues too) and the metabolic analysis profile showed B12 and folic acid deficiencies and a relative need for vitamin C. The profile also showed bacterial dysbiosis and mild amino acid malabsorption. The dr has my son taking the following:

 

Vit C - 500 mg.

Vit D - 1000 IU (blood test showed normal but since this is wintertime and we live in the Northeast, we are supplementing

Zinc - 40 mg (these levels were very low)

magnesium - 480 mg (levels were low)

Folinic Acid - 800 mcg - twice daily - this seems high and I am concerned about some reports I read (which was very confusing to me) about Folic Acid lowering the seizure threshold. Is that true? Or can a deficiency cause seizures?

Enzyme Complete Dpp-IV - one with every meal

Saccharomyces Boulardii - one - twice a day

MindLynx Probiotic - 1/4 tsp twice a day

MB12 - nasal spray - daily

 

The other thing the dr wants to have my son take is an antibiotic for the bacteria. My concern is that the recommendation from the lab was Septra. I did have it compounded to remove everything my son is sensitive to but I am not comfortable with the side effects. The other choice is to use herbs - Plant Tannins & Uva-Ursi - but with my son's seizure history, I am not sure if this would be a good way to go either. So confusing!

 

So that's our story. Any thoughts, comments or suggestions are welcome. I feel that you guys probably know so much more than I do. I just want to help my son.

 

Thanks,

Justine

[Chemar]

Hi Justine and welcome

 

I dont feel able to answer on much as seizures fall into a very different category than the TS spectrum of disorders that my son has

 

I did however want to let you know about an excellent natural antibiotic made from lauric acid (lauricidin) from coconuts. It is marketed as Monolaurin and we get our from the Vitamin Shoppe (sold in their stores and on their website)

 

all the best and hopefully others with info relevant to your son's condition will be able to provide more advice