pr40

xerxing, if I understand it, may result in worsening of symptoms which should pass in a day or two. allergy should be more violent and would not be related to the same symptoms. there is a third thing -- if this is a sulfur based abx and your kid does not process sulfur well (this is the case with us), abx will result in additional symptoms and worsening of some symptoms. when you stop the meds, this effect also disappears. we know we don't process sulfur well because of our methylation gene mutations. there can be also other ways in which abx can cause worsening, by promoting yeast, gut issues, etc.

just one note on CBT -- the book I recommended above is useful BUT you may not see great results during such a bad exacerbation. I mentioned it just to give you some idea how you can try to cope as you are waiting to start the treatment. CBT is more helpful when kids are not in an exacerbation.

our kids had fixations -- i.e. thoughts, feelings, behaviors they could not change or put out of their mind. that was their first symptom. then symptoms changed, evolved sort of, and two years later we saw classical tics in ds. dd was a bit different. as you wait to get pandas apt, try to find strategies to cope with fixations. externalizing them, as in put that bad (reoccurring) thought in the basket and throw it away. that is dawn huebbner's advice. book title is What to Do When Your Brain Gets Stuck:

if kovacevic does not work or in addition, you may want to find dr treating chronic fatigue syndrome. there has been a break thorugh recently in diagnosing it.

" I am considering doing the MTHFR only because I have heard it mentioned here. What exactly do the mutations found tell me. I'm not sure I understand the test but hear once I know how to interpret it can be very helpful to recovery. My son is 30-40% better depending on the day. Initially he was about 80% better but some symptoms have come back. He is also on NAC and Tumeric for tic control." one thing that 23 and me gene analysis can tell you is if NAC and Turmeric have side effects on your child because of sulfur in them. about tests: they are not exact. you want to see a trend. if it is downward, that is great. if that downward trend is accompanied by lessening of symptoms, you hit the jackpot -- one cause of p/p identified.

your questions is the answer: if you didn't think it was an exacerbation, you wouldn't have written the post, unfortunately. I think, you are only learning what your dd's P/p is like. you are lucky that she returns to the base line for some time. You may want to have a procedure in place when this happens. Motrin is a good start. I am curious: why do you call it PTSD? PTSD has, if I understand that one, a very specific set of symptoms that includes repetition compulsion, nightmares, etc. The cause can be physical as well as psychological.

early intervention is important. One could thing is that you know what to do, so do it. Start with ibuprofen, find a dr willing to treat, and hope for the best. Look at it this way, you are in a better position to help the second child. I am sorry about your husband. It is really important that parents are the same page. I have the same problem with my wife. It seem sometimes that I have three PANDAS around me.

there were posts on this forum in the past describing ivig pre and post -- you may want to do a search. since IVIG is not P/p specific, you may also want to do a general online search.

you may want to search older posts if you haven't done that already. i think I remember some a few years back. you can also try to contact their authors directly.

"The whole point of this thread was to say how crazy it is that this disease has been around and getting noticed yet it seems like its still stuck in first gear as far as testing and studies on it...and very little information, and the stuff that is out there is contradicting itself....if it wasnt for this forum, I would be really stuck lol." I don't think you are correct about this. P/p is still "controversial" for those who are not well informed. NIH is in our corner and has been for a while. There are many PANDAS clinics out there. THere is no test yet because there cann't be a test for this condition given how it is conceptualize at this point -- there is, however, a good proxy, Cunningham's. science does not understand the way immune system works or the way genes work or the way methylation works well enough for a better definition of this condition. When that underlying knowledge is available, we will have a better understanding of this pediatric condition. it, probably, will no longer be just two conditions Pandas and Pans but several. there are tests for various infections that might cause P/p. The principle of healing is also very clear: lower inflammation, clear infection. For some infections like strep can be cleared more easily, though not easly by any means. Lyme is more difficult although there seems to have been a recent breakthrough with allergy medicine -- if I understand that one correctly. Many kids are getting better.

I meant to send this as a message but your box is full. Hi Trinity, As I mentioned in one of my posts, I have a similar problem. I went to see my dermatologist and he suggested that LS is easy to diagnose and that I don't have it. I also have psoriasis but it, too, is not responsible for the itch. Dermatologist said that this is just an itch. For me, it gets worst after I take magnesium and zinc, just like your daughter. Dermatologist gave me cream, hydrocortionse1% and iodoguinol 1%. It seems to help. I just wanted to let you know in case your daughter cannot see a dermatologist due to her other issues. best wishes,

i thought this is an interesting article. helps understand anorexia a bit better http://www.medicalnewstoday.com/releases/289144.php

here are results from a study on what is in your probiotic https://labdoor.com/rankings/probiotics

"I'd hate to start her on something for no reason... but don't want to hesitate if she can in fact be helped. Needless to say I have much to read and research." i understand the sentiment but you may not have any other choice. there is no diagnostic test for either TS or Pandas that would prove one or the other. there are tests that indicate P, like strep and Cunninghams. you got to ask yourself, what is the downside of long term low does abx? do research on that. except for clostridium dificille, I don't think you will find any. after three to four months on abx (usually a combo), you will see if they have positive impact. You can also check your family history, it is indicative of what your child has. If TS runs in your family, it is more likely to be TS than PAndas. If autoimmune issues run in your family, it is more likely to be PANDAS than TS. Find a competent doctor who is willing to TREAT Pandas. I your place I would start believing this diagnosis until proven otherwise.

I take offense at description "throwing stones". posts, including my own, for other confirmation by others. that is very far from throwing stones. we ask for confirmation on this forum for any and all new suggestions. corroboration is necessary before we invest time, energy and money. I am not sure why you would call that throwing stones and why you would take an offensive tone.

Many Children's Hospitals are not Pandas friendly. You are lucky that your dr is considering that diagnosis and prescribing antibiotics. You don't say much about your child's symptoms. If you want to learn about long term abx read on other conditions caused by strep like rheumatic fever. We, too, were very resistant to abx prior to PANDAS. But, it changed our understanding of, basically, everything.

here is what we take CoQ10, Olive Leaf, abx, magnesium, zinc (once a week), iron, fish oil. molybdenum once week in the evening. ibuprofen daily. kids are fairly stable.

both medicines may result in initial worsening which should not last long. your question should be if over a period of time of about a month they are getting better or worse. if they are getting worse, I would still consider other causes before giving up on abx.

you did run the results through genetic gene, right? it looks very complicated -- reminds me of what we have, all these dead ends. do be mindful of sulphur in curcumin. if I understand things correctly, your kid should not be taking it or needs to regularly detox. we detox with molibdenum. here is my son's puzzle. I gave up trying to figure it out. COMT V158M rs4680 AA +/+ COMT H62H rs4633 TT +/+ COMT P199P rs769224 GG -/- VDR Bsm rs1544410 CT +/- VDR Taq rs731236 AG +/- MAO-A R297R rs6323 TT +/+ ACAT1-02 rs3741049 GG -/- MTHFR C677T rs1801133 AG +/- MTHFR 03 P39P rs2066470 GG -/- MTHFR A1298C rs1801131 GT +/- MTR A2756G rs1805087 AG +/- MTRR A66G rs1801394 AG +/- MTRR H595Y rs10380 CC -/- MTRR K350A rs162036 AA -/- MTRR R415T rs2287780 CC -/- MTRR A664A rs1802059 AG +/- BHMT-02 rs567754 CT +/- BHMT-04 rs617219 AC +/- BHMT-08 rs651852 TT +/+ AHCY-01 rs819147 TT -/- AHCY-02 rs819134 AA -/- AHCY-19 rs819171 TT -/- CBS C699T rs234706 AG +/- CBS A360A rs1801181 -- no call CBS N212N rs2298758 GG -/- SHMT1 C1420T rs1979277 -- no call

About autism and MG, I am saying that they are find that, to their taste, "too" many such parents come to see them hoping for Pandas/Pans diagnosis. I heard it ones from two different drs we see there. I could not believe what I was hearing. If I were you, I would focus on the sudden onset OCD. And give any background info when they ask for it. Among the reasons I am suggesting you go prepared and know what you want is that this kind of Pandas/Pans dr is going to be only a solution for a part of your puzzle. You will need to figure out the complete treatment of your child on your own -- whether it should include diet changes, which supplements, if any, to take, decide on appropriate CBT, and so on. You also need to go one step at a time not to get too overwhelmed so I'll stop here.

in your place, I would post the bloodwork results on the forum and ask here first for our collective opinion. then go to the visit with informed and push for what you think is best. if OCD was sudden after the the pneumonia, you have a classical definition of PANS. You don't need anything else. So, you mean she did not have any OCD before the pneumonia? At MG they are especially vigilant, I am very sorry to say, about parents with autistic children hoping for Pandas/pans diagnosis.

in general, it is good to know what you want from specific drs. we see Dr W. and he has a very conservative approach, for my taste. So, I would say that in this case you have to know even better what you want. What makes you think that your child has Pandas/Pans? did you do any tests?

i read a recent post on this forum about essential oils and when I googled it, internet is full of personal stories how these oils helped with, specifically, tics in pandas children. all stories seem to repeat the same basic narrative and could be an advertising ploy BUT I haven't tried them myself and cannot say it either way. they may be worth a try?

can someone on this forum corroborate success with essential oils? descriptions I found suggest immediate effect -- almost miraculous reversal which makes me seek more sources anyone?

these are very positive results. both studies indicate that plasmapheresis and IVIG treatments are helpful. What is also interesting is that the first study suggests, if I understand it correctly, that the duration of illness prior to intervention is not a determining factor of success of the treatment. Our dr, from Yale who was a part of that study, indicated to us that IVIG is likely not that helpful and rather risky -- the first study of plashmapheresis shows that to the contrary there were only minor adverse effects. IVIG and pph are administered the same way.