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  1. Hi all. I have been waiting and periodically looking to see if any study results were ever published regarding the IVIG study that the NIMH had undertaken. I was led to believe the results would be published January of this year (2016) but have not seen or heard anything. Does anyone else know what happened with that? Thanks!!
  2. OK. Maybe I shouldn't say this, but I absolutely disagree with using amoxicillin for a UTI. Grrr. Augmentin would be my preference. In addition making sure that a sensitivity was done to make sure the antibiotic was the correct one, and after that a test of cure culture to make sure it is clear. It seems like another possible step would be the steroid burst? Also some docs are using a steroid taper?
  3. I don't know where you live. This most recent flare for you began in February. We always worsen in March and that is when our snow melts and mold and pollen hits the air. Our DS has been in a severe flare since March 2014 and he had a 2 month reprieve in Jan and Feb 2015 only to spiral down again March 2015. So in our case we have figured out allergies are the trigger. Our DS has been on prednisone 10mg recently as a maintenance dose after a 9 day higher dose taper. He was so nonfunctional in March he was homebound and after one 30mg tablet before bed, he woke up the next AM normal. So if that doesn't prove the PANS theory I don't know what does. We too have questioned the TS vs PANS situation. My theory is that we have in our family the genes for autism, tic disorder and OCD...so our DS has those genes. I can tell in hindsight by observing family members. I feel like a trained neurologist, the things I notice in people now that we have dealt with our DS over the last 10 years. But, he will become so nonfunctional in a short period of time, and his current flare has not only severe OCD and tics but also symptoms of autism and age regression that you would have to see for yourself to believe. He looks and acts like he has mental retardation along with the tics and OCD. There is no way that is just TS. And I do not think regular TS would respond to prednisone. That is my opinion.
  4. Hi there. Wanted to respond to your concern. First, as a parent you will need to make the decisions you feel most comfortable with, so I would never tell you what to do. However, this is what I would do if it were me. First, I would proceed with the tonsillectomy. I am 47 now and I wish I had mine out when I was little for lots of reasons. I should have had them out, really, but my doctor when I was little said it was falling out of favor. I had so many bouts of tonsillitis as a kid and in that day in age the doc looked in the throat and ordered me penicillin...they did not test me for strep until I was well into college. The older you are the harder it is. Now of course any surgery is not risk free- I would never say it isn't. But IMHO if you are or may be dealing with PANDAS it definitely could reduce strep infection. Any time after age 12 would be a much harder recovery. And as far as the zithromax, I don't think the dose is a problem. Take for 3 days and it will be in the system for 6 days. If you are treating an active strep infection you need to take the 5 day course...but this is for a different reason. Good luck!
  5. I think this interesting, as my DS is also 14. We just went though this in the Winter. He had IVIG in August 2014. Depression was transient for him...just like religous OCD was several months before that...now he cusses like a sailor. That being said, I am all about not just standing by. We had DS on Paxil and his depression worsened. We then had to wean him off that which was a bear. He is now on Celexa and is up to 20mg. I wouldn't have picked that SSRI if I would have realized at the time it can cause prolonged QT...he is thinking about cross country running. To be honest, he thinks the Celexa helps. And he is not currently depressed or suicidal. But IMHO I have never observed an SSRI or dose increase of one to help my DS. As a matter of fact, I have never seen anything improve him as much as prednisone. Not SSRI's, not antibiotics, and not IVIG. It was that dramatic. Of course, we are still searching for our trigger here for PANS. Just wanted to chime in. I think if someone is having suicidal thinking, all treatments need to be aggressive, but there is an FDA warning for SSRI use in teens and kids for a reason. Proceed with caution, but proceed nonetheless.
  6. Hello all. I really look to this forum for information; a lot of what we have been able to do to help our DS 14 we learned here. So here goes...our newest dilemma...anyone else in our shoes? DS 14 has had PANDAS/PANS since aged 4. Currently battling severe flare since March 2014. Had IVIG August 2014. On 500mg Augmentin twice daily. On Celexa 20mg daily. Now since March 2015 on prednisone- took 9 day taper which IMHO helped so much more than the IVIG ever did. Also vitamin D slightly low so on 50,000 iu D3 weekly. Allergies are the trigger. We are sure of it now- been tested for everything and symptoms increase with the pollen count. Our rheumatologist plans for him to get another IVIG soon, when school is out in 2 weeks, then attempt to wean off the steroids. Here is the dilemma: if per PANDAS/PANS specialists you need to make sure any infection is clear before IVIG is given for it to work and do its job, what about with allergies that are always there? I am treating him aggressively for the allergies with claritin in am, benadryl 25 mg afternoon, flonase in PM and 50mg benadryl before bed plus sinus rinse in the evening. He cannot tolerate singulair. Our rheumatologist says no way to allergy shots. But I have heard others say they have done them for this. What to do? His IgG level keeps declining, in the 500 range now but was higher in the 600 range before that August IVIG. I wonder...if it wouldn't be worth it to try low dose sub Q imunoglobulin every 4-8 weeks and see what happens. We had avoided steroids for years as they were not really recommended for PANS, but that is what is keeping DS functional and not homebound right now. He missed a year of his life last year. Thoughts?
  7. Unfortunately all kids are different. First, unsure if you are treating with a PANS/PANDAS physician But for my DS14, he did have an exacerbation mid March (post IVIG 8-2014) It happened when the snow melted here and mold allergens would have been high, and he had a viral URI right before that He had a sinus nose smell that led us to get sinus CT and rx for diflucan 100mg daily X 14 days (already on treatment dose augmentin since June 2014) Sinus CT: chronic allergic changes His exacerbation: tics, OCD, age regression and baby talk, and a purely encephalitis like reaction you would need to see to believe He was put on a steroid taper and it stopped his symptoms WE are seeing an ENT this Wed to look up there I put him on benadryl and night, loratidine in am, flonase at bedtime His vitamin D was low so he is now on 50,000 iu D3 weekly X 12 weeks He is taking 10mg prednisone daily now...tried to wean down to 5mg but can't May need IVIG if can't get off steroids That is our story but yes allergies can trigger for us I know steroids are not "recommended" for PANS/PANDAS per se but they are working for us right now- lot of side effects for sure and need to be used with respect
  8. Did Dr. Latimer have an opinion on that? Neurologists should be able to tell the difference between tics vs chorea movements I have video of my son in exacerbation, one video showing more chorea- Chorea is more rhythmic...hard for me to explain...but would be a clinical diagnosis I think
  9. Thank you for this. My DS14 was diagnosed at age 4 He has had a rough year Now that he is older it is scary as a parent. He flared last Saturday at the movie theater- they almost called the squad but we got there in time He was better the next AM after a 30mg prednisone increase Nice to hear of the older patients and how they are doing and managing...since we are now entering that territory.
  10. I called to see Dr. B also just recently and was told the same thing. I can see Dr. B's reasoning, as it sounds like he has had patients with a family member who is a strep carrier, and that is why those patients were not getting better, so it sounds like that is his policy: to rule it out. If there is a trigger in the home, IVIG can work but the patient may become exposed again. We elected not to schedule an appointment because we had already done that testing in our family, and they still want to do their own. Our reasoning to see Dr. B was large number of + allergies on testing and a chronic sinus issue plus low IgG. I have a local immunologist we see but he does not treat PANS, but our rheumatologist will. We cannot travel from OH to CT repeatedly either and we would need to go back again for test results.
  11. The Hippocratic oath states "do no harm". To do no harm: Correct diagnosis. Treat the condition. If unable to treat the condition, refer to someone who can. ("Treat it or refer it") Failure to do this will do "harm".
  12. I have been reading some of the most recent threads. I see a trend that I can't believe we are still talking about. Physicians still not educated in PANDAS/PANS and or physicians who know about the disorder but refuse to treat it. I am lucky to have a local rheumatologist who is open minded and will treat my son. But her one and only partner will not treat. I attempted to hand him the latest consensus paper and he wouldn't even take it from my hand to read it. REALLY? I work in health care, but in a different specialty. It irks me this is still happening...since when, if you are a licensed medical professional, do providers get to shun treatment for a group of patients? Don't get me wrong. I am grateful for the gains that have been made so far. But we are at a point now, with major institutions treating this disorder, that patients should have better access to treatment. Game on. Rant over. Thanks for listening.
  13. Hmmm My ds who has so many allergies has a low IgG level now. He did not have low IgG when his allergy testing was done...but it was low last year and is still low even though IVIG given this past August.
  14. This thread is interesting to me. My DS14 PANS has allergies, but they have varied in intensity over the years. In 2010 I had the allergy shots ready to go. But he was not in a major flare at the time and I was afraid of triggering the PANDAS/PANS so I chickened out. They actually had them ready to go and I changed my mind. They did bundle the allergens together for those shots we never got...but he had so many positives on the back testing he would have needed 3 shots per week at the beginning. So they could not get them all in one shot. He is very fair and has very sensitive skin so now I wonder...he was tested for 56 items and was 3+ to 4+ for all of them except one: he was negative for dust mites go figure. But he was positive for every mold, tree, grass and weed they tested for. That was so long ago I know he would need retested if we ever considered allergy shots again. He is flaring now, only stable on steroids, so if I ever did that I would ask for blood testing (isn't that the RAST testing?) I was wondering what Dr. B's opinion on allergy shots would be. I have the opinion of 2 rheum. and one said yes and the other said no way. But I can see that allergy issues are triggering DS now...but it is a chicken/egg issue for me (what is triggering what)
  15. I am by far not an expert, others may chime in. But first you would want to make sure his sinuses are clear. I had heard you need to be on abx longer for sinus infection- 4 weeks? Not sure. but CT of sinus would tell you if sinus is clear of acute infection I think, or if there is a walled off infection. That would tell you if you need more abx.If he is flaring and responds to steroids, I would not hesitate. We have recently been using steroids for ds 14. He flared so badly this past Saturday night at the movies with friends, the officer there almost called an ambulance for him...we had been trying to taper him down from 10mg daily to 5mg daily. That night after we got him home I gave him 30mg burst and the next AM he was better. I then continued at the 10mg dose...he would have less OCD on a higher dose but 10mg is the minimum he can tolerate and be functional to go to school. We are only doing steroids until summer when we plan a 2nd IVIG.
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