My son had a biopsy of his esophagus Monday. The result is the EE is no better or worse. This leads me to consider the possibilities:
1. Worms do not help EE.
– Really don’t know. My son has always been asymptomatic so I can’t ask him how he feels.
2. Worms take longer to help EE.
– Most people using helminthic therapy start to see some results after 3-6 months. It’s been 7 months since the helminths reached the effective stage.
3. Need a higher dose of worms.
– This is my main thought, based on the doses adults need to go into remission from IBD.
4. Could just prevent more damage while not reversing the existing damage.
– Perhaps, since he doesn’t seem to be worse.
The goal now is to add more helminths. They are not hurting him at all. Also, he started a course of IVIG for his hypogammaglobulinemia. Hopefully that will improve the seizures and EE. Some people on the yahoo EGID group said IVIG helped their kids.
There is a new autoimmune disease rocking the autism community. It’s caused by folate antibodies that block the passage of folate across the blood brain barrier. This can cause “neurodevelopmental symptoms including spastic paraplegia, cerebellar ataxia, dyskinesia, seizures, acquired microcephaly and developmental regression”.
My son and I both tested positive for two out of the two types of antibodies present in this disorder. Mine were relatively low while my son’s were high. This could explain the treatment resistant epilepsy and is treatable with B vitamins. I would trade B vitamins for toxic anti-epileptic drugs (AEDs) any day. AEDs already failed him. And IVIG could help with this too. A milk free diet helps lower the antibodies, because it seems milk is the trigger for the folate antibodies. This is because mammal milk contains folate receptors.
A real scientific explanation why the GF/CF diet helps autistics!! He’s never been milk free for his EE biopsies, and I read somewhere that milk was one of the major triggers of EE, even when the allergy testing is negative. Hate to loose another food, but milk is making him sick. Basically we are both on a GF paleo diet, and I am CF too because of the antibodies. It’s doable. FastPaleo.com is my go-to website for easy wholsome recipes. Go food!