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peglem

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Everything posted by peglem

  1. Use for sleep here as well. Have not noticed side effects other than sleepiness. You could trial the abx 1st- then down the road try adding in the clonidine.
  2. I'd do a throat swab when ever anybody around him has has strep. The thing w/ titers is that they may indicate a past infection or exposure. A huge percentage of PANDAS/PANS kids get strep infections w/o any typical symptoms, so not necessary to have a sore throat, fever, etc. And you may have some OCD that you don't know about- the less severe obsessions/compulsions may seem like quirks or phases, and many times kids will hide them because they don't want people to think they are weird.
  3. My posted results are the ones I got running it through Genetic Genie. Then if you go to the heartfixer site: http://www.heartfixer.com/AMRI-Nutrigenomics.htm it gives you a whole lot of information about each kind of mutation and treatment suggestions, etc. Its just so very complicated and what they suggest for one mutation might be contraindicated for another mutation and I get bogged down in the acronyms.... And if you do 23&Me right now, I think the FDA has made it so they can no longer give you health risk assessments- so you'd get the raw data to run through apps like genetic genie, but not the 23&me analysis of your risk for developing say, alzheimers disease. I found 23&Me's analysis pretty useless anyway.
  4. I hate to ask, because seems like you are a bit hounded...but, my understanding of the heartfixer stuff is going so slow. So I would appreciate so much if you could sort of give me your take on this: Here are your homozygous mutations as indicated in your SNP gene table above (not including MTHFR): MAO-A R297R MTRR A664A BHMT-08 CBS A360A Here are your heterozygous mutations as indicated in your SNP gene table above (not including MTHFR): COMT V158M COMT H62H VDR Bsm VDR Taq MTR A2756G MTRR A66G BHMT-02 She is also compound heterozygous for MTHFR. We found that out before doing 23&me, and had some measure of success w/ Deplin, P5P, and methylfolate (really great at first). Thanks, if you get a chance.
  5. My daughter takes deplin, and it works well for her- but she MUST have methylcobalamine (methyl B12) with it, and a certain amount of B6 (P5P form). She is MTHFR compound heterozygous, but also takes medications that deplete folate. Deplin is a very, very high dose of methylfolate and most people require a lower dose, w/ higher doses causing problems. Just saying, you need to procede w/ caution and get as much info as you can about your child and the vitamins you are using. LLM's posts have a lot of info on methylation/using methylated supplements, so you might want to search out her posts for more (and better) info.
  6. Does anybody know where to get info on these, as run through Genetic Genie? I see a lot of info on methylation snp's but not the detox part.
  7. I'm assuming those IgG and IgM results are total, and not for a specific pathogen? There should be reference ranges on your lab work. I know that "normal" ranges for at least IgG can vary with age.
  8. You are so dang smart! Allie has, in the past, had an excellent response to cholinergic agonist (bethanechol). But it seems to have an immediate short term effect, then makes no difference. I wonder though, if I started messing w/ something else that may have nullified the effect. Lots of spaghetti on these walls! So, maybe I'll try bethanechol for a few days and see what happens....
  9. I haven't recieved my 23&ME results yet. But, when I was looking at the pfieffer histamine info (a long time ago), I was struck by the fact that, my child didn't fit. Trying to remember, but it seems like she fit the profile behaviorally for high histamine, but, I've always thought she had low histamine because antihistamines really ramp up aggressive/ragey behaviors, her IgE is almost nonexistant, and she has low IgA, IgG4&2. She is compound hetero MTHFR from blood test, and 7.5mg of methylfolate (w/ MB12, and P5P B6) does wonders for her. I have not tested her Ig levels since we've been supplementing w/ the methyls, nor have I tried antihistamines...
  10. Something else to think about- almost all medications deplete certain nutrients...you can google to find info on this. I think sometimes we see really good response from a medication, then as nutrient (especially B vitamins and folic acid) levels are slowly drained- we see symptoms return and don't make the connection because its not like an immediate side effect of the medicine, but appears down the road. I think this is particularly true of people w/ MTHFR mutations.
  11. It might be easier to get a 504 in place. That is just a plan that details accomodations for your child to access the regular curriculum w/o any special ed services. Your problem, of course, is that Bs are fine grades, and most schools will not consider his difficulties urgent enough to address. On the other hand, 504s generally do not cost anything-
  12. You can ask about the doctors by name, but it usually works best if people PM you if they have negative feedback/experiences to share.
  13. Just want to share my experiences w/ functional behavior assessments over the years. My child's "behaviors" are largely due to obsessive thoughts and compulsions. But when she was being observed for behavior plans, the observer almost always "invented" a reason for the behavior, since, of course, they could not fathom what she was thinking. So, the causes of her behaviors were thought to be task avoidance, problems transitioning, etc. Behavior plans were put into place that addressed these, and they always failed because they were not really working on the underlying problem. Finally, in her sophomore year of highschool, (new school, new observer) we got a person who observed her every day over a period of 2 weeks and was not afraid to admit that they could not identify antecedents to her behaviors. This person also was familiar w/ OCD and treatments. What a difference when they began helping her find ways to deal with what was happening internally, instead of trying to shape her behaviors w/ external motivators!
  14. We were living like brother and sister, more or less. We didn't fight, because I refused to engage. He was jealous for many years about the time I gave to Allie and her 3 siblings. But, I think the thing w/ Allie is that he tried to discipline her behaviors (including her fight or flight episodes) out of her. This, of course, made her feel more threatened and only served to make the episodes escalate. Once she turned 18, he wanted to place her outside the home. I would not allow that, so, bottom line, the only way for him to be rid of her was to throw us both out. We lived in a home owned by his mother, so he wasn't going anywhere. Just very selfish, w/ no sense of responsibility to his family. He has OCD as well. Everything is about him.....
  15. Allie and I moved out (away from my hub, her dad) last week. She has a lot of trouble with changes in routine, so I was expecting this to be pretty rough on her. She has been doing much better than she did before the move. So much calmer. The roughest time she had was when her dad came to visit for a few hours while I ran some errands. I've decided his presence causes anxiety in her.
  16. Might I suggest you keep him on full/treatment dose abx until he is very stable. Then try reducing to prophylactic dose, but be ready to take him back up if he starts to backslide.
  17. So, is there an ICD-9 code for immune dysfunction and inflammation in the frontal lobes? Just don't call it autism-call it what it really is...MHO.
  18. Something else to consider- just because you found strep- it doesn't neccesarily mean that is the only infection- even if the strep is cleared, many of us have mycoP as well, which can also trigger PANS. So, if symptoms return when abx is withdrawn, maybe there's something else that the abx were fighting as well, that hasn't cleared yet. Just something to think about.
  19. That is what happened to my daughter- and every illness, behavior change, oddity was attributed to "autism" (which, yes, just means you have a set of symptoms). THEN, they would ask, "Other than the autism, is she generally healthy?" What do you say to that when they claim all her illness is autism? Why yes, except for being very, very ill, she's healthy. OMG, so frustrating. Although, I think maybe autism should be included under post infectious encephalitis/autoimmune disorder rather than the other way around. Either way though, it seems there are many in the PANS community who do not want PANS associated w/ autism. When my daughter was 10, and seriously screwed up from lack of treatment, we finally found a ped willing to explore cause, and although he made a huge, huge difference in her health- she remains severely developmentally delayed and completely dysfunctional.
  20. Well, I would think continuing antibiotics (which worked) is safer than trying psych meds, which is a real crap shoot trying to find one that works w/o side effects.
  21. This from the pinned thread for PANDAS info- See post #5: http://www.latitudes.org/forums/index.php?showtopic=3756&st=0#entry29305
  22. I'd tell him the symptoms you're seeing and what treatments you are doing or have done. Answer his questions honestly, but I think the advice in another thread was not to suggest or come looking for a specific dx. But, surely, you could say Dr. SoandSo rx'd this or that because he thinks my child has lyme disease...
  23. I think this thread needs to be bumped. If your medication is not working, check out the manufacturer. This is worrisome for PANS because the response to treatment is a big factor in the clinical diagnosis. And here is a link to where you can search the manufacturer's history with the FDA.
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