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pr40

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Everything posted by pr40

  1. pr40
    dd9 has frequent stomach pain. pain is not terrible but it occurs daily. she is on augmentin and zytromax, probiotics, and anti-inflammatories. when I gave her augmenting and zytro in the morning, pain was in the morning. When I switched zytro to evening, pain moved to evening. I am not sure if this is just a coincidence or not. Zytro is supposed to be easier on the stomch than augmentin. dd is on gluten-free, dairy-free, sugar-free, and now corn-free diet. In short, I don't think it is diet. suggestion, please.
  2. pr40
    many thanks, 3bmom. we started no corn diet yesterday and will report results in a week or so. my plan is to be fully organic, gluten-, dairy-, sugar-, corn-free.
  3. pr40
    similar here. we give it sometimes before bad, has calming effect. go slowly.
  4. pr40
    3bmom -- i look into my flours and some of them are not organic like corn starch. do you happen to know how one can avoid round up? the interview recommended using organic but, as you say, that may not be enough since roundup is sprayed onto organic grains. what should we do exactly?
  5. pr40
    I am asking myself that q as well after that interview. We make most our our own food, like three meals a day, bread as well. So, after I heard the interview I went around my clapboards and the only thing I found, I am proud to say, was a box of corn CHeks that no one likes to eat. so, I still have to check some flours we use, but most of it is organic. thanks for asking
  6. pr40
    i saw PANDAS ASD spectrum disorders, if I remember correctly, only in one context, Cunningham's test web-site in an early version. Not sure what they use now. But even there, there was no attempt to say that PANDAS is an ASD. PANDAS may have ASD symptoms and some ASD diagnosis may, in fact, be PANDAS. Also, some ASD symptoms may be influenced by an auto-immune condition that might also be a part of PANDAS. But that is where the coincidences, I expect, stop.
  7. pr40
    I do want to add this: we've been on gluten, dairy, sugar free diet, eating mostly organic for a year now. While we do see change, the change is not comparable to what the interview with Seneff interview describes. My takeaway is, eat organic, but that alone will not help you.
  8. pr40
    my understanding is that serotonin makes melatonin. low serotonin, low melatonin. melatonin does seem to help in other ways than sleep, not sure how exactly. you could assume that ds has difficulties with serotonin and see if 5-htp helps as well. there were several recent posts about it.
  9. pr40
    in addition to great advice you got already, you can start thinking of the condition as an auto-immune response and go into combat mood. Radical diet changes, detox, anti-inflammatories, lots of exercise, and so on. You could also benefit from knowing his methylation genes, if he has a leaky gut genes, how he handles sulfur, etc. Regardless of what causes the condition, if it is auto-immune process of healing seems to be remarkably similar. symptoms he has do seem neurological. did you try zinc? copper? do you know his levels?
  10. pr40
    I try to answer you questions. How long from the initial acute onset of the symptoms of PANDAS, PANS, PITAND, or CANS did you start treatment? Did the treatment include antibiotics? How was your success in eliminating the symptoms? To what extent did your child return to normal? What time frame did this take? 1. sooner the better. with dd 12 months later, with ds right away. guess which one is doing better? 2. yes. dd and ds were bad but not sever cases. so abx was the treatment of choice. ds also had steroid burst. both are on 2 diff abx 3. gradual, very gradual. exacerbations are milder and shorter. more and more normal days, after 1 year on abx 4. we changed our idea of normal. these are auto-immune conditions. with them you are never normal. sometimes, when one symptom stops, another begins and you may not really know 5. maintaining good quality of life is our goal. it requires work, special diet, supplements. etc. i'd be surprised if all that can go away and we can just be "normal".
  11. pr40
    lipoic acid may be something to try. we haven't done it ourselves but I did some research and it may help in some cases. there was a recent thread, LLM had a note of caution.
  12. pr40
    i assume you know that there was that other PANDAS study of IVIG treatment that just concluded. there is a recent post that includes stories of two participants. This study is a study of genetic background and its influence. Good to see that NIH is continuing the work but this is just an observational study and will not include treatment.
  13. pr40
    you seem to have it all down but I do have some questions. probiotic can cause tics. you just upped the dose if I get that. 1200mgs of NAC might be a lot. over time, what was well tolerated may no longer be. also if he has any sulfur processing mutations, NAC may not be the best thing. I don't think anyone can tell you how long it will last. i understand that you are reluctant to give long term abx but consider that you may not have a good alternative. straightening immune system is a good idea but you also want to protect basal ganglia from further damage by the T cells. I am not sure what supplement or what regime other than abx would help you in that. just found this post from another tread "Nitshel, I have an 8 years PANDAS son, and to cut a long story short, since I am against antibiotics (we put him on 3 weeks with improvements but I did not want to continue sistematically) I tried O.L.E., olive leaf extract, 500mg 3 x day as I read on this forum from a member called Stephanie. My son has still vocal tics but his spitting and worse all his aggression and personality change has gone. You can try to find info on the web and on this forum. OLE saved our life and I am for ever grateful to have come across this information while we were experiencing ######! Wishing you and your family all the very best." .
  14. pr40
    on mutations you mention: it depends what your other mutations are. if kids don't have comt and cbs, you can give methyl donors like metyhlcobalamin b12, folinic acid, and so on. personally, i would get rid of the dog. kids have to get on board and help with healing. unless they do that, it will be twice as difficult for you. we tell them that sugar is poison for them which it is. we tell them that pet would be poison for them which it would be. and so we try to avoid these just as we would any other poison. if your son had IVIG and it didn't work, perhaps you could contact some of the heavy guns like Dr. Sweedo or Dr. Leckman at Yale and see what they suggest. gf ready-made food has too much sugar. you may want to think of gf diet in a different way. most Asian, Latin American, and African cooking is gf. they ought to offer something palatable. stevia seems to be a good substitute for sugar
  15. pr40
    the reason PANDAS kids go on abx is prophylactic to prevent further infections and damage to basal ganglia. so, 10 day course will not be enough for that purpose. also, you may but also you may not see results in those 10 days. usually, kids get worse before they get better. you suggest that there is a PANDAS blood test. there is Cunningham test but it is not a proof of PANDAS. since you are already doing various tests, do immune panel. see what blood count is, vitamins and minerals. if there is a deficiency as there sometimes is (d vitamin, iron, zinc, b vitamins too), that would be helpful to know. otherwise, you may want to be seen by a PANDAS specialist.
  16. pr40
    did anyone suggest IVIG for your ds15? did you try steroids? is he on gluten and dairy free diet? did you do genetic test on him? given that he is a complex case, knowing his metyhilation mutations (23 and me does it for $99) might be helpful. about DD6 -- what is a gluten free processed food? did you also exclude sugar? depending on mutations she has, tics can be caused by some supplements. is she on any? you got a dog and three PANDAS kids? -- we have a fish, i recommend it. at least you can exlude one potential source. how about mold? on myco: much has been done because Iraq war vets had myco caused chronic fatigue syndrom. if you think it is myco, you can follow the protocol established for them. google myco and iraq. if you have questions about celiac, I have it and can try to answer. best of luck
  17. pr40
    NIH did PANDAS IVIG study, results should be out soon and they will answer your question. You can e-mail Yale Child Study Center who was the co-organizer and ask them. I asked about a year ago and back then I heard that on average IVIG results were encouraging. Then, just last month I heard that they were not all that good but that was second hand from someone who didn't want to believe in IVIG. If you find anything from the NIH study, please post it here.
  18. pr40
    we believe myself and my son have bartonella, but he is not handling any treatments at all, makes his rages psychotic, just single drop of an herb makes him crazy, wondering if you could share your LLMD with me and if anyone has heard of someone going psychotic on the slightest bug killer? i want to comment only on this posting by dgfindley -- if your kid reacts so much, you may want to figure out his metyhilation mutations and deal with them first before getting any medication. it might be helpful
  19. pr40
    one encouraging thing is how quickly the PANDAS treatment seems to be changing at least with some physicians. Call to Sweedo, abx right away -- I am impressed and heartened that medical profession is slowly but surely coming to our point of view.
  20. pr40
    I read all presentations from the recent PANDAS conference. It seems that new theory of PANDAS has BBB barrier at its center. Then, I found the following about BBB in MS from Wikipedia "It has sometimes been suggested that, rather than being a disease of the immune system, MS is a disease of the blood–brain barrier.[25] A recent study suggests that the weakening of the blood–brain barrier is a result of a disturbance in the endothelial cells on the inside of the blood vessel, due to which the production of the protein P-glycoprotein is not working well.[citation needed] There are currently active investigations into treatments for a compromised blood–brain barrier. It is believed that oxidative stress plays an important role into the breakdown of the barrier. Anti-oxidants such as lipoic acid may be able to stabilize a weakening blood–brain barrier.[26]" My question is if you tried lipoic acid. effects?
  21. pr40
    how about sugar intake? my second guess is that if it is not yeast, it could be sugar -- you went to a disney show which, I assume, could be the occassion to eat some if not a lot of sugar.
  22. pr40
    I don't mean to be rude, but what is your goal exactly? who cares if secretaries are not nice? if you want to see dr b, what they do or not do should not stand in your way.
  23. pr40
    another note of caution, you don't want to be in position to either educate or convince this immunologloist. and be careful, many drs today say they believe in PANDAS. Great for them. That is not enough. they have to be willing to TREAT when there is no obvious proof of ongoing infection, as they would do in case of rheumatoid arthritis so, make sure that YOU know what you want from this apt. is it long term abx, steroid burst, IVIG or something else if it does not work, there are more and more competent drs who are willing to treat PANDAS. tell us where you are and someone will give you a name.
  24. pr40
    perhaps it is not herxing. our kids get really really hyper from methylcobalamin and we need to do other forms of b12. depending on your genetic mytations, you may get a different rection to methyl groups, folinic acid, and so on. when kids are hyper niacin helps. but go easy with it becaue of flushing.
  25. pr40
    there are not enough posts about improvement. here is one. Today we are much, much better than we were a year ago. We are not out of the woods yet and life is still difficult but it does not seem hopeless as it used to. here is what we did: 1) abx, for a year now. Augmentin and Zitrhomax 2) gluten free, casin free, sugar free, and then also night-shades free -- not as hard as you'd think if you have basic cooking skills and time 3) supplements -- many anti-inflamatories, magnesium, zinc, vitamin D. we also expereimented with methylation supplements but I am not sure what worked. 4) behavior -- there were times when nothing worked. when they are approachable rewards do motivate them as do frequent time outs, time alones, which help them calm down and regroup. 5) total dedication to them by both parents. we are older didn't mind much not being able to do anything other than high maintenance for the kids. 6) reading this forum. it calms me down and, of course, this is where I find my best advice. thank you all
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