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Everything posted by Kiera

  1. Hi ilovedogs, just sent you a pm about Az PANDAS/PANS support group!
  2. Personally, I think mixing it up is probably a good idea . . . Who knows which gut flora are flourishing in one's system and which aren't? We use a mixed probiotic that contains about a dozen different flora, and then also a sach b. -- not Florastor but a Jarrow brand version. Yes, supposedly sach b. is a beneficial yeast that can help crowd out "bad" yeast like candida. If you want (and have the extra cash!) you can go to a DAN Dr and have him order a comprehensive stool analysis - shows the exact gut flora! We were low on lactobacillus, NO yeast after 2yrs on abx (yeah) and a little high on clostridium so doing a course of flagyl to bring that down, and switched to a better probiotic. Now that's custom treatment!
  3. I agree! Dr T believes Pandas research IS autism research! It provides a glimpse into the autism world and may provide the answers, he said all this on one of his radio/blog shows! The explosion of "autism" is all immune/gut dysfunction and depending on age of onset and various other factors, depends on where on the spectrum you fall. There still are "classic" cases of autism, but these are few and far between. The bulk of them start out normal and regress into autism in the early years.
  4. Email: info@pyroluriatesting.com Direct Healthcare Access II Laboratory 350 W. Kensington Road Suite 118 Mount Prospect, Illinois 60056 United States Phone: 847-222-9546 Fax: 847-222-9547
  5. I'm testing ds for this this week. Test cost $80, results come to me. I plan on taking result to DAN dr already treating methylation issues, I also think addressing methylation helps with pyroluria also.
  6. All I know is that the fb PANDAS group has been told that the presenters/conference asked that the info not be spread on social media. My answer to this is not have it open to the public. I will refrain from expressing my feelings.....PANDASRadio with Marcel Cairo(?) will host Dr. T next Wed. Supposedly, this is "an approved" method of dissemination of the info presented. Discussing on social media has the potential to cause mass conversion disorder! Like, Like, Like!!!
  7. yes - i did think about that, but we do have strong strep evidence for onset, so it served my purpose. . . but i do wonder that also. esp b/c i believe ds had an exacerbation due to stress which would appear that he always has these troublesome antibodies circulating. i just read the synopsis for Dr. T at the upcoming conference and i wasn't sure i was previously aware the alternate fever theory was in constrast to molecular mimicry. EAmom -- are you going to that conference? i'd love to hear about it! Hard to keep up with all of Dr T's evolving theories on the mechanism of pandas From his last podcast he implicated cytokines and a certain area of the brain called the TMN (control center that affects alot of other centers), he's also said histamine is a root cause and at Irvine he's going to announce the 3 genetic defects that are found in 70 - 80% PANS kids!! He thinks autoimmunity is a latent mechanism of long-standing PANS. Brilliant mind, he's throwing out all these theories to open up the discussion of the issue, if anyone can figure it all out, it's Dr T! We just have to saty tuned!
  8. Thanks so much. I do think the neuro would be checking for other things along with the folate levels, as my ds has a hx of dev. delay.
  9. My ds had T&A in Feb and turbinectomy & drainage of sinus. Last month, sinus CT showed all clogged again! Did sinus surgery, anthroscopy (widening openings) and ethmoidectomy, F/U visit showed clean as a whistle! He is on veramyst spray and zyrtec for severe allergies but now at least his nose can drain properly. Quick recovery (a day), highly recommended!
  10. For those who were in the trial, quick question. Did they sedate or anaesthetise your child for the LP? If not, did your child co-operate? Reason I ask is local peds neuro wants to do LP at some point to check for cerebral folate def. but says need anaesthesia. Tx.
  11. My guess is the NIMH has to thread carefully with what they recommend, as is the case with regards to vaccines also. They can't go around telling everyone to pull normal looking tonsils without enough evidence to back it up! Just like they couldn't rec. IVIG and abx until the initial studies were done to show some effectiveness and now they are repeating those studies on a larger scale to provide more evidence! Perhaps in the future, the next area of research would be the T&A and examining the tonsils post-op for infection? So all we as parents have to go on in the meantime is what the front line Drs are recommending and seeing in their patients!
  12. yeah...good question Where do you live? Well my ENT didn't know much about pandas but deferred to my local pandas neuro who recommended it. Once he did the surgery and saw how bad they were and then the pos cultures, no-one was more surprised than him! I think he just put in his notes, "removing for pandas symptoms, cannot guarantee T&A will help symptoms". I've since started a local pandas support group with two other moms (similar stories with infected normal looking tonsils) and we're compiling alist of local pandas friendly ENTs! If you're consulting one of the pandas specialists, you might enlist their help in convincing the ENT. That's what my other coordinator did, she got Dr T to speak with ENT and now that ENT is more pandas aware and willing to pull normal looking tonsils on all the kids we send his way! Parents have to take the lead and push for what you need! Pull any research documents off Dr T's website regarding pandas and tonsillectomy to give to ENT! PS I'm in AZ area.
  13. Since pandas is still considered "controversial" there's only a few true specialists who see large quantities of pandas kids. So very few take ins. I travelled cross country to see Dr B. and well worth it. Does a thorough work-up. Most the rest you pay up front and claim back some from ins. Good Drs too though. Or go to www.pandasfoundation.org and click on providers to see a state by state listing of Drs, although they might not be experts but can treat. Alot of DAN Drs are familiar with pandas as alot of kids with autism have pandas too, but usually they do not take ins also. I think Dr Bs your best bet, he does have a 2-3mt wait. Good luck.
  14. My ds only had one ever strep infection, the one that started Pandas. Pandas kids immune systems do not react the same way a typical kid's does, so you just don't know what's in those tonsils (and adenoids) until they're out and cultured and as long as there's infected tonsils in there, will keep making antibodies and triggering pandas symptoms.
  15. My ds's "looked fine" also but were infected with pseudomonas when cultured and scarred and difficult to remove! Just an FYI, Dr T says to "get them out"!
  16. Hi everyone, Does anyone know, if and when IVIG becomes the standard treatment for pandas (presuming after the IVIG clinical trial shows it's effectiveness) and ins co.s can no longer deny it as experimental, do we have any recourse with the ins co. to backpay for IVIG we paid for OOP? Especially ones we appealed and got denied on the basis of experimental? Just wondering!
  17. Most Pandas experts say No to Vaccs, anything that can stimulate the immune system can cause a flare-up. Last I heard about Dr Swedo on the issue was at the OCD conf. in Chicago in which she said vaccs are just a "blip" on the pandas radar, but anecdotally I've read differently! I think she has to say that as she speaks for a federal agency (NIMH) and doesn't want to be blown off as alarmist and discredited (as we know they do to the autism advocates)
  18. I'm asking a question for my friend (lost ACN password not signed up again yet) Well her ds has elevated mycop IgM titers since June, is on azithro, tried weaning and symptoms sneaking back! What generally is the plan with elevated IgM myco? Which is the best abx and do you keep on a full strength abx until the titer goes down before weaning? I've read it takes along time to treat mycop, is this true? Any advice is much appreciated!
  19. PTCgirl, Given time, you will be vindicated and your brother will have egg on his face!! Then you can brag that you were way ahead of the curve and maybe YOU should've been the doctor in the family
  20. The 5 day on/off with azith is for kids with "normal" immune systems. Dr T says pandas kids need it continuously. And beth Maloney said on a recent podcast, when stopping abx in pandas kids, it should be done just like an SSRI, meaning, wean down slowly (only when in a sustained remission) and if symptoms return, then go back up on the abx. Never stop abruptly, as you never would an SSRI!
  21. LLM Thanks for all the great info. Really that chart looks like MTHFR for "Rocket Scientists!!" LOL! One quick question, when finally getting on the right supplementation to treat the MTHFR, broadly speaking, do you know how long it takes to correct the deficits? And for those taking psych drugs, at what point could we consider lowering them as the supplements kick in? Tx.
  22. Be sure to bring a copy of Dr Swedo's white paper describing PANS, so your ped can't dismiss PANDAS due to no strep trigger! The PANS paper includes lyme as a trigger (found on pandasnetwork.org)Seems like you have done your research, you're on the right track!
  23. I think Dr B in Conneticut is taking the lead via legislation to get a study going into how Pandas treatment is covered by insurance companies. There was legislation passed a few months ago regarding this but it is a long, slow process. ERP is usually covered under the mental health plan and antibiotics, steroids etc are already covered under regular insurance plans so that leaves the IVIG and PEX (the big expense items) as the battleground area. And insurance won't pay until the research is there to PROVE it works! But I get your point, insurance is moving toward a "results based" coverage, meaning they will only pay a Dr X amt of money to treat X condition, so it's up to the Dr to find the most effective method of treatment, but this is way down the road I believe.
  24. If they'll pay for PEX, is there any way you can get that? It's not a blood product, actually worked better on the NIMH study, and tends to work quicker. We have done both (only go the PEX once, but would have done it more if we could have gotten it.) Don't get me wrong, the IVIG helped, too, but I would definitely choose PEX over IVIG for my children if given the chance. According to Dr B, PEX still needs to be followed by IVIG as it removes ALL the antibodies, good and bad, so you've no antibodies left to fight infection and you're still left with the same problem of insurance not covering IVIG. Don't know how true this is though.
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