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  1. I "knew" when DS took a 10 day course of amoxicillin for an ear infection and from days 3-10 he was a completely different person. He was so calm, pleasant, happy, and flexible. I didn't know about PANDAS yet, but that was the moment that made me start searching. After reading about PANDAS I was pretty sure this was it, but it was the Cunningham panel that gave me confidence.
  2. To download raw data: Once you have signed in, on the top right corner of the screen you will see your name with a down arrow beside it. Click the down arrow, and a menu drops down. From the menu, click on browse raw data. Now just below your name (a little to the right) you will see the download button.
  3. Just an FYI on 23andme - they don't analyze your entire genetic code, but specific parts of it, including MTHFR. Here's their explanation: https://www.23andme.com/more/genotyping/ Hope this helps!
  4. My DS picked a spot completely bald on the back of his head. It was about 1.5 inches in diameter, and it took about a year to grow back in. I don't recall noticing anything different about his hair, like it coming out easier.
  5. In our experience, antibiotics only worked when we hit hard and heavy with high doses, but psychotrophics should be approached very conservatively!
  6. My heart goes out to you! My son has been in the hospital (not helpful at all), and just spent 13 weeks (July, August, Sept, and part of Oct) in a residential intensive services unit for observation and medication review. Surprisingly they had heard of PANDAS, but they only had a very basic awareness of what they considered a new "controversial" diagnosis. That wasn't very helpful. They insisted Prozac was worth a try for his OCD, which resulted in him going manic and running away. They even had to call Police and Search and Rescue, who eventually found him in a forested area beside a river. STRESS!!! At the end of 13 weeks they recommended a mood stabilizer, which is actually helping a lot, but by no means a fix. Talk about desperate times! DS is only going to school for about 1.5 hours right now, which is an improvement, since he hasn't been to school in at least 6 months. He has missed as much school as he has attended over the past 5 years. We tried home schooling but it was a disaster. The only relief we had was a year of wellness when he was seeing a LLMD and being swamped in multiple antibiotics and supplements. (He's both IgM and IgG positive for lyme via IgeneX testing.) Of course that resulted in lots of herxes, so the wellness was interrupted by those, and by trial and error with some abx that were a disaster. Overall though it was amazing, but unfortunately not sustained. Every time we stopped abx all his symptoms came back. So now we're looking at methylation, trying to figure out why he can't stay well, since multiple high-dose antibiotics is not a life time solution for us. If you do the 23andme I would follow LLM's advice in this thread: http://www.latitudes.org/forums/index.php?s=0ec4ebf27282122a74b24778875525d9&showtopic=21211 She's our methylation guru and her advice was extremely helpful for me and gave me a great starting point!
  7. Wow, can I ever relate to your post! My DS10 also cycles, and on top of the cycling he has a brutal October flare every year. He was also a nightmare on Augmentin - so bad that he should have been hospitilized. We saw die off reactions with other abx, where he would get flu-like symptoms along with behaviour regression for a few days up to 2 weeks, followed by huge improvements. But his augmentin reaction was NOT a herx (IMO). It was all behavioural (mostly rage, aggression, and panic) with no relief for a month straight, and no later improvements. He had a similarly brutal reaction to Biaxin. Now that I'm researching methylation I realize he can't tolerate sulfa containing drugs or foods. I have a couple of thoughts on the methylation/MTHFR discussion in this thread, as I have been researching this like crazy the last couple of days since receiving our 23andme results. First, did you test for other mutations, or just MTHFR? We just got results on the 23andme testing, and it was a total eureka. Along with MTHFR and a whole host of other heterozygous mutations, my DS has 2 homozygous mutations of COMT. He can not tolerate any methyl donors since he already has too many floating around. Mentax sounds like a whole boat-load of methyl donors. It could be possible your DS also has COMT mutations. If so he would benefit from hydrox-B12, rather than methyl-B12, and anything that starts with "methyl" should be approached with extreme caution. Here's a little blip on COMT: COMT Mutations COMT (catechol-O-methyltransferase) helps break down certain neurotransmitters and catecholamines. These include dopamine, epinephrine, and norepinephrine. Catechol-O-methyltransferase is important to the areas of the pre-frontal cortex. This area of the brain is involved with personality, inhibition of behaviors, short-term memory, planning, abstract thinking, and emotion. COMT is also involved with metabolizing estrogens. COMT (-/-) individuals can usually break down these neurotransmitters efficiently, but COMT (+/+) individuals may have trouble breaking these chemicals down from impaired function of the enzyme. With a COMT + status, people may have trouble with methyl donors. This can lead to irritability, hyperactivity, or abnormal behavior. They also may be more sensitive to pain. Another thought, there are different types of MTHFR mutations, and from what I'm reading, the recommended treatments are not the same. My son is MTHFR A1298C + which, unlike the more common C677T mutation, does not lead to elevated homocysteine levels. It would be helpful to know which MTHFR mutations your DS has, and to treat them specifically. Final thought - according to the methylation heart-fixer document which LLM has posted here, it sounds like it is critical to address CBS mutations first. Any other mutation "fix" will only get bunged up at the CBS level, unless that one is addressed first. I'm new to all this methylation stuff, so I hope I got that all right. Hopefully someone more experienced will chime in if I'm off. I think it would be well worth the $ to run 23andme (only $99), if you haven't done so already.
  8. This might be a dumb question, but does anyone know to determine if there is a SUOX mutation from the 23andme data? I ran it through Genetic Genie and there is no mention of SUOX. When I did a search for SUOX on the 23andme raw data I get this : (oops, I tried to copy the result, but it came up a mess when I posted it here. It gives 3 SNPs and kiddo's genotypes.) Can I figure anything out from this raw data? I'm stumped. Here are PANDAS DS's mutations: Homozygous: COMT V158M COMT H62H Heterozygous: VDR Bsm VDR Taq MTRR H595Y MTRR K350A MTRR A664A BHMT-02 BHMT-04 BHMT-08 AHCY-01 AHCY-02 AHCY-19 CBS A360A SHMT1 C1420T And MTHFR A1298C
  9. My 3 boys took plaquenil for several months. Our LLMD said it was a cyst buster. When I googled that I found mixed opinions, so I'm not sure, but we decided to go ahead based on the anti-inflammatory properties anyway, since we were also dealing with PANDAS and severe joint pains with swelling. I do know that my oldest DS, the one with PANDAS, had a great improvement in phsycial and behavioural symptoms when we added plaquenil in. He had been on combo abx for months before we added it. I was very concerned about the retina side effect, but I've only heard of damage in longer term use, so we opted to give it a try, while paying careful attention to eye sight. (I drove the kids crazy asking every day if they had any changes in their vision.)
  10. I don't have an advice, just wanted to commiserate. DS had 2 short bouts with Trichotillomania. The second time he actually picked a bald patch in the back of his head while he was lying in bed. I was horrified. It took a year to grow back! I agree, this one for some reason is so disturbing. Sure he chews his nails so badly they are permanently damaged, but that bald spot was just so horrifying and such a constant and obvious reminder. Hopefully the mino and/or steroids will do the trick before it gets out of hand for your DS.
  11. I believe I had PANDAS (onset early teens). I ended up with a bipolar diagnosis. In my late teens I went on tetracycline for 2+ years for acne. My "bipolar disorder" disappeared while I was on abx. I struggled with moodiness and mild OCD after that for a few more years, but it was manageable without meds. By my early 20s it all just went away. I'm 35 now, and finally living life without looking over my shoulder wondering when and if "it" is coming back. So if I really did have PANDAS I suppose I outgrew it - not with puberty, but with adulthood.
  12. I was able to get disability benefits for my PANDAS DS. It doesn't replace MY missed income, but it helps a lot with medical expenses, travel, medications, supplements, etc. I'm in Canada, so I'm not sure if you have something similar in the U.S. Perhaps others can chime in on that.
  13. I want to chime in on the "bipolar" question. Warning, this is just my opinion. My DS10 is diagnosed with "mood disorder-NOS" which is a polite way to say he's bipolar, but too young to say so outright. I am really cynical about this and about the pysch profession in general. Psychiatry has distanced itself from medicine and I believe that is a tragedy. Pdocs look at a collection of symptoms, label it, and try to medicate the symptoms. There is no thought as to the underlying triggers, and the factors that actually CAUSED these symptoms. I wouldn't get too hung up on a psych label, unless you need it to get help/treatment. And while I am not exactly enamored with the psychiatric profession, I do think most PANDAS kids would benefit from the support of a PANDAS-knowledgeable pdoc on their team. The only problem is actually finding a pdoc who has a clue about PANDAS. As for bipolar, I was diagnosed bipolar as a young teen. Looking back now, I realize I had PANDAS. My "bipolar disorder" disappeared when I went on antibiotics for 2+ years for acne. When I grew past my pediatric years the so-called bipolar faded away completely and never came back. I think I was one of the lucky ones who outgrew PANDAS. I'm desperately hoping the same for my son!
  14. I'm 35 with a 9 y/o PANDAS DS. I don't think it's an age thing.
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