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My son has PANDAS and Aspergers. He’ll be turning 21 at the end of Nov and no longer eligible to continue seeing his Dev Ped or the Bio Med Dr who treats his PANDAS. He was treated for Lyme Bart last year and is also MTHFR pos. I’m desperately seeking a new physician for him that “gets it”, in the NYC area. A plus if a PANDAS Dr accepts a Medicaid plan, but a must for PCP. Thank you.
MountainMom posted a topic in PANS / PANDAS (Lyme included)Hi I'm new here and have spent the past few weeks immersing myself in the wealth of knowledge you have all made available here. It's been incredibly helpful as I try to learn everything I can about PANS. So first I just want to say thank you. My question is, are most PANS kids compound heterozygous for MTHFR? Please excuse me if this is a ridiculous question- I've been barely able to understand the ginetic mutations. I'm asking because I received some of my son's test results and he is compound heterozygous. Also, can someone explain why it's important to know your mutations? So confused! Thank you and please excuse my lack of knowledge.
Folate vs Folic acid - MTHFR
rowingmom posted a topic in PANS / PANDAS (Lyme included)Why folic acid supplementation/food fortification (energy bars, cereal etc.) can be problematic if we have MTHFR deletions. /www.youtube.com/watch?v=cWFPRI6X7P4&inf_contact_key=30aab23c6df2132c1a540c189895646f33499b9de8e26120377f0d2028093332 DD has an MTHFR deletion, and I was supplemented with high prescribed doses of folic acid when I was carrying her. She was born with a bruise at the base of her spine which has only faded in the last couple of years. I think we are lucky that she didn't acquire spina bifida from my supplementation; which was prescribed to decrease just that risk.
Hello, my 8 year old son, mild/controlled pandas for 4 years, on August 6th had 3 pins (like nails) were yanked out of his healing humerus (had broken upper arm bone 3 weeks prior from monkey bars fall) by ped orthopedic surgeon. He was sedated with nitrous oxide and versed. He takes prophylactic augmentin daily and a weekly Zithromax dose for pandas. The next day he began a new and severe flare with food refusal. Working with dr. T. Many labs drawn, changed to cefdinir and Zithromax daily, no help. Now will try valtrex and biaxin. Forcing son to eat/drink, he lost 5 pounds, now 70 pds. Not currently dehydrated, eating between 500-1000 cal/day under duress. C/o nausea, fear of vomiting, swallowing difficulty. Also poor disposition: grouchy, won't go outside. In the 6 mo prior to arm break he would get a breakthrough pandas flare from skinning his knee or any break in the skin (bug bites). In the last 2 weeks of this yucky flare I notice he improves after he eats a treat with dark chocolate. Now I'm thinking caffeine, histamine, mast cell, etc reaction to having the pins pulled. But I have trouble wrapping my brain around this concept. Can't reach dr. T yet. Can any of you school me in how this works? The histamine, mast cell, inflammation, genetics, mthfr..... Labs, diagnosis, treatment.... Thanks so much.
FASCINATING case study about a 16 yr. old boy presenting with neuropsych symptoms (severe, with hallucinations) All resolved with H. Pylori treatment and B12 injections. For those of you (like us) with the MTHFR C6677T snp, he had it also, and the psychiatrist noted that that mutation may have been why his symptoms presented differently than normal B12 deficiency signs. Also of note - if we have malabsorption issues, it's important to "bypass the pesky gut". (injections or sublingual...) At least until we can find out what types of gut problems we have, and FIX them! http://evolutionarypsychiatry.blogspot.com/2012/11/b12-deficiency-and-psychosis-case-study.html
Positive Update for DD12 (lyme/pandas/mthfr)
Suzan posted a topic in PANS / PANDAS (Lyme included)My dd12 is doing great so I wanted to give a positive update to you guys. After starting to see a lyme doc in DC in May and getting her on a good protocol and getting her MTHFR diagnosed, she has changed dramatically at long last! Brief history..... first strep age 11 months old chronic infections throughout childhood (strep, sinus, chest, ear) sensory processing disorder (age 5) gluten intolerance (age 6) PANDAS (age 7) Lyme (age 9) separation anxiety, unusual fears, OCD, emotional outbursts, unreasonable, etc. MTHFR mutation (age 11) She still reacts to strep but she recovers more quickly. She sleeps in her room by herself now and I was able to move into the downstairs master bedroom for the first time ever. She gets herself ready for school in the morning. Takes showers, brushes teeth, puts her dishes in the sink, cleans her room. Things are so close to what I think is normal. We still have a ways to go on lyme treatment and I don't know what to expect with the strep reactions. Right now, hoping we can get through the year with no strep infections. She's on Tindimax, Alinia, Diflucan, Thorne Methyl - Guard Plus, probiotics, Yucca Root, and Dandelion Root and a couple other things I can't remember now. She will probably get an abx protocol change in a month or so. Might stir some things up.
MTHFR mutations - add us to the list
Suzan posted a topic in PANS / PANDAS (Lyme included)So dd11 has been diagnosed with 2 mutations of MTHFR through her new LLMD. I don't have the lab work in my hand yet so I don't know what the mutations are. LLMD is putting her on the methylated supplement for it. dd10 and I need to be tested now. Has anyone found that your regular doctors will run this test? We have appointments in 2 weeks to find out. But wondering what your experience was and if we should just to to the ones I see on line for $100 - $200? dd10 and I don't have an LLMD at the moment. Thanks, Susan
Factor 5 Gene Mutation
Suzan posted a topic in PANS / PANDAS (Lyme included)Just found out my dd10 has positive factor 5 mutation. I think this may be one that comes in one and/or two copies but I don't know the specifics of her result. Her neurologist wants us to see a hemotologist soon. If anyone has experience with this, can you let me know your experience and what you have done as far as doctor's visits, lifestyle changes, etc? I don't know what might be necessary at age 10 with no signs of blood clots as opposed to later in life. She also has homozygous a1298c MTHFR gene mutation. We are currently waiting for her 23andme results. I don't want to go over board stressing about possible issues this fines and only focus on the big ticket items that will help her get well at this time. Thanks!
Homozygous C677 MTHFR - ME Now!
landamom posted a topic in PANS / PANDAS (Lyme included)So some of you may remember that my PANS daughter is compound hetero for 1298 and 677. My husband has one 1298 mutation. My other daughter has one 677 mutation. Of course, being the mom I was more concerned with everyone else and didn't even think to get myself checked! Well I was tested recently as part of a regular physical and it turns out I am homozygous for C677T... and my homacystine levels are already high. I was glad that I somewhat had an understanding of what it meant but now I am in supplement mode and trying to figure out what I have to do to bring my own levels down. I'd love some advice from anyone who's dealt with the double mutation and high levels. And to those moms out here with kids who have MTHFR issues - get yourself checked!! Stress can make things worse, fast.. and I would say all of us on this board are dealing with STRESS!!