Hi there, I'm new here. I'm from the Seattle area and have a teenage son . I think we both have symptoms of masto, but I just don't have the energy today to write my entire loooonnng story. I made an appt with a doctor someone on this list mentioned, so hopefully he's got more ideas.

My son has been treated by an environmental doctor for 8 years, because 4 neurologists, a handful of pediatricians, a cardiologist, and a dermatologist all have negated my concerns- wacky mom syndrome, ya know? one even wrote that my hobby was quote medical researcher unquote.   My son's diagnosis was/is "autism", which is medically meaningless, unless you are a doctor with no answers, then you get to use it as the reason for IBD, flushing, severe tantrums due to pain, head banging due to migraines, dramattic reactions- which can be attributed to "just autism". whodathunk?

So.....Even after 8 years of working on issues, peeling away layers of sickness and immune issues, he's STILL got  lab evidence of damage to his BBB, immune abnormalities (low IgA, NK cell count = 12, elevated IL-13, no immunity to repeated shots, etc). I have been an "autism is a baloney name for severe immune dysfunction" advocate for a decade. Dr Theoharides owns one of my son's blood samples. So does a leading PANDAS researcher. Is this sounding familiar to anyone?

My son once began having seizure-like episodes after we got a vitamin C that was made from corn. He used to get absence seizures from gluten. (probably still would, but no infractions lately) Traces of foods and chemicals have set him off. Hence, slowly, over time, we have become one with the earth We are organic, and have a very green house! consumers

My son had a history of severe gut migraines and head migraines. He is doing better lately, gut is way improved. He's had a history of being very phenol intolerant. He's had very, very low levels of sulfate, cysteine and glutathione.  Bananas make him , well, bananas!   Seriously, absolutely crazy- like Damien in "The Omen". Apples induce bizarre affects- like racing back and forth across the room, breaking out in a sweat, unable to stop. Same thing has happened with salicilate meds like aspirin and sulfasalazine for gut inflammation.

Most salicylates and phenol-rich foods, some of which overlap with high histamine foods- cause bright flushing of the cheeks/face and ears. He has learned to ask for Epson salt baths after ingesting too many phenols, and this evening asked for baking soda in his bath (which we don't have on hand, darn! He's a barometer for lactic acid or phenol/histamine overload ).

Currently, besdies a severely restricted diet, his worst issues are:

1.) he has a rash that looks like tiny pimples that are in every follicle on his chest and back. The leading dermatologist at our local kids hospital offered creams for that (eyes rolling). Recently, I found that giving Chlor-Trimeton with dextromethorphan really helps him. He used to have severe personality changes, OCD, tics, aggression, etc. The behaviors stopped overnight with anti-histamines. Hmmm. If I miss a dose of the 3x daily dose we're on, he had mood issues. The anti-histamine has settled the rash down SOME, but it's still dramatic- kinda like keratosis pillaris gone wild.
2.) He lost 2/3's of his outer eyebrows 3 years ago this month, and got a red rash that is on every follicle, after a stressful weekend visit to his other parent, probably with lots of air fresheners, chemicals, perfumes, food infractions, etc. It's not hypothyroidism. (I actually have a doc that understands thyroid who keeps up with his labs- and heck, at the rate I'm going, I'll have MY endocrinology degree before this is all over But...the dermatologist had no solution there either. He said it was a rare variant of keratosis pillaris, and  gave us some lactic acid and steroid cream. It didn't work, and my handsome guy needs those eybrows if he's ever going to make the cover of GQ!

Anyway, I hope there's some folks on here from my area. BTW- I tried Ketotifin for him, but he got weird mood issues, so now that we're on Chlor-trimeton and DXM, I'm going to give it another try.
I was just invited to speak at a local conference, and did a presentation on how anti-histamines solved a 18 month regression in personality/mood- with tics and OCD in my son, which seemed like "PANDAS", but was non-responsive to ABX, and am now looking to find more physicians to do some initial small trials. I have about 5 thus far- none in WA state:(

Last, I have read lots of reccommendations to take tylenol on this list, and I would like to voice an opinion. Tylenol depletes glutathione, (GSH)and glutathione deficiency or low GSH contributes to immune dysfunction, allergic reactions, etc. On the other hand, ibuprofen seems the safer route for aches. It also brings down brain inflammation, so this might be a good choice for some.

Thanks for letting me in!


   

there is a masto support group in your area...would have to look it up and I know there are several members there as well
redbird

Hello again, there is a nutritionist in the Bellingham area that has a special interest in Autism and biomedical treatment, and I guess he speaks at many Autism conferences. He might be nice resource. Besides any of that his wife and him have a great food blog with yummy recipes. Most are gluten free, soy free, dairy, free. Which is a plus for me. Anyways here is there blog link and their contact info is already on there. I don't know if your into the whole biomedical treament/DAN doctors thing. Don't know if you have gone that route or believe in it, I don't want to offend anyone. Take care.
http://www.nourishingmeals.com/
Melissa

Welcome! Glad you found us.

I am currently in British Columbia, I wonder if I could join the pacific north west support group!