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I think, from my one appt with dr m, that she would start even smaller. I saw her with my 135 lb 13 post pubertal daughter & discussed this exact issue. maybe 12.5 mg for a few weeks then 25 then hold a few weeks , then 37 mg, 50 mg. GO WAY SLOW . START WAY LOW. this is hindsight from our bad experience and from our appt in Fl.

Is Dr T working with any kind of insurance for IVIG?

no, though enbrel was mentioned for one of my children by our rheumatologist. are you finding someone who is thinking this may be an avenue for severe cases with clear immunomodulator response?

my child felt pain in the shower. true pain. I am not sure what exactly helped but I know pex and steroids independent of one another did. also, lyrica helped with terrible nerve pain. I think their brains are on fire, if you will, and the sensory system is totally out of whack.

DITTO on this-- Cigna paid for pex (orginally on an otpt basis but then it got "fixed" a total of 3 times for my kids. this was in 2011. I know it makes it worse for you to read that. However, I will also say it was not a cure. My child who had been sick for a short period of time (a year and severe for a month), was helped very quickly by pex, but still needed IVIG, ABX, time and intensive therapy. We are now 20 months post pex and she is doing well. The sicker, longer since onset (3 years) and older (14) child- it helped, but took a month and did not help for long. By 3 months later, pex was repeated. It took IV steroids, IVIG, TIME TIME TIME and very intensive therapy lasting four months to bring almost total functionality back. I know how desperate you feel- but please know that PEX is not the only way to healing. Have you tried steroids? Have you considered residential intensive therapy (he is old enough for McLean - Dr Jenike- PANS friend- runs it)

so have they done a swallow study on her? is she otherwise a normally developed young woman?

I never turn down any offers of samples;)

how about a rheumatologist?

maybe dr k website? webpediatrics?

Yes, it was for lyme by a very good LLMD. She was an "OCD (severe) only, some movements PANDAS-but-no-strep kid who had only Lyme and Babesia WA-1 found as a possible infectious cause" how is that for a description ? So- PITANDS- already neuropsych, and not able to function much as a normal preteen due to OCD. After the Rocephin, she lost everything, literally- many basic faculties of life (reading, continence, speaking (almost total screaming), communicating sensically). this was beg in Spring 2010. NOW-- 2 years later and almost exactly 4 years post onset: :D after pex x 2, ivig, steroids and intensive ERP, augementin XR 1000 mg BID, many attempts at diff psych med (some were temporarily helpful) my child is doing amazing. (still on Riluzole and Anafranil) For anyone who has been on here awhile or knows us-- I know you do, smarty!-- you will understand the miraculous-ness of that statement

we possibly had a similar experience. my child became diagnosably psychotic after a 3 month course of IV Rocephin. some of these abx affect many things, including neurotransmitters, and are not to be taken lightly. we will NEVER know whether the psychosis was from too much, too long Rocephin (affecting glutamate) or pandas progressed to something so much more, but it has been presented as a strong possibility.

my insurance (CIGNA) was able to tell me the UCR for certain codes- charge codes given by the therapist. I also think the UCR tables are updated every 6 months or so. I do not know if this information is required by law, thought I have seen where some facilities are required by law to post their charges for standard procedures. It would only seem right that the insurers should be required to post their allowances. It is based on the Medicare rate in most states, I think, but the charges are not state specific, in that it is particular& proprietary to your ins company. I would find a code for, say, one hour of CBT- ask the therapist what they normally bill on the receipt; call the ins co & then beg, demand and say you will be writing the insurance board of your state because this is wrong that they will not share this information with you. Notice, I said wrong, not illegal, because I do not know if it is required by law. Be persistent and a little bluffing never hurts. I have had the experience (not in CA) that most of our first visits with a provider are longer and therefore cost more and are not reimbursed at a good amount. Follow-ups fare much more reasonably. It might cost $580 for first visit and I get $200 back. Follow ups might be $250 and I get $150 back-- these are made up examples. good luck.

S&S: risperidone worked here, not as well as your example, but calmed massive rages, organized her thoughts, "emotional glue" as our PANDAS doc called it; though she is long off it. interesting. mine is 14 & off abx, also thank you so much for sharing. Sorry to hijack your thread, minimaxwell-- I will shut up now

go to USF!! or if necessary consider residential at rogers. intensive therapy changed my family and my children's lives. pm me if you want

Thanks s&s!! i feel better now how is your daughter doing since she is off Lyme tx? Those are very good suggestions you gave. I will keep them in mind (forbid I never need to know it!) and pass them on to someone else in a similar situation.

at g'town they use a central line (femoral or in the neck) they are not going to send him home like that! I think it seems almost a typical process - approve otpt, then they approve inpatient, after the hospital requests it. There is a different technique for plasmapheresis- dome through a peripheral line (like the arm and only a little is exchanged over several times over a few weeks- it is done (or at least was done) like that at another facility that treats PANDAS. or sort of treats PANDAS... I do not think it was very successful. But maybe it was for some folks. PEX as done at Georgetown had great effects for my kids. the older, sicker one took longer to respond but we saw definite improvements. best of luck to you.

Have you considered upping the Augmentin? I know you did not ask this-- we saw big improvements from my teenage daughter at 1000 mg XR BID- I would (having been the lyme route- though with CDC + tests) let it go ( i feel tomatoes or worse being thrown at me) or at least let it go right now. try upping the abx, good ERP and maybe more time after IVIG (I am talking like a year) I am only speaking from my experience - I would not say I was a "smart" lyme mom -- just a lyme mom, who believes it can be causal or contributory to our kids' illness- but just offering another opinion. hope I am not making enemies now

Perhaps it is not the best article, but he recognizes a few things that might be helpful : checking BOTH strep titers swabing skin , not just throat PEX does work (too bad about the IVIG comment & what is their reasoning:( prophylactic abx (though that dose of zithro (250 mg) seems small for a BIG kid. refers to expert in field (just make sure you go to the "right" expert!) And my next question is- and please respectfully submitted-- does this doctor treat PANDAS patients? I know that he has spoken at one conference about a year or two ago (pediatric medical) and spoke on PANDAS. My very kind and understanding family NP attended, I believe. I think he presented the same sort of opinion. Kind of on the fence= a little more to our side than others, though I agree- I would probably not take this to my doctor! The best one, I still, believe- with the most credibility- especially on getting OCD medically treated would be the one on the IOCDF website by Dr Jenike and Susan Dailey Sudden and Severe Onset OCD (PANS/PANDAS) - Practical Advice for Practitioners and Parents/ The reasons I think this is the best article to help our kids: 1. As much as everyone's doctors love science, they do not have time to read a scientific article & probably are not interested unless they are a PANDAS parent themselves or Dr Cunningham 2. It is a PSYCHIATRIST who says "these kids need more than therapy and psych meds!" You cannot get better than that!

I am so happy to read this! I know you were a serious problem without good therapy. excellent news!!!

Just chiming in on a ditto to MomwithOCDSon and dcmom's post-- we saw the same thing- aggressive, strong medical treatment put PANDAS into a kind of remission-- clearly and without it we never would be where we are now (which is a happy, hopeful place!) but we needed intensive ERP therapy to bring my kids back. anyone know where next year's conference will be??

I think they are super busy in the summer. we made contact in early march and went three weeks later. dr storch contacted us very soon after our call. had we not been able to go during the school year, it would have been a much longer wait. we also went for school refusal.

sounds like she was awfully ill with pneumonia this spring & summer! any idea of pathogen? Did they do a sputum c&s or anything? Even if infection is cleared (as I would sure hope all those abx would be doing)-- it may have set the autoimmune path in motion. Do you see worsening on the Avelox? It is is fluoroquinolone antibiotic, which have been known to cause hallucinations and other neuropsychiatric behaviors. When she is better, would you consider trying prednisone, to see if it helps her? I think any advice you can get while waiting for Dr L is great. I understand about the LLMD/babesia issue (been that route)- but we got our most help from Pex & Steroids (oral and IV). Has anyone given her solumedrol or other corticosteroids during any of this pneumonia treatment? Did you see a difference? Another lab avenue to check- if you can get someone to- would be Anti-nuclear Antibodies or other autoimmune markers. that might help point in a direction - though either way probably does not make a difference- just interesting to know, I guess. We see Dr L and once you get in there-- you are in good hands! Just keep being persistent and organized- it seems like you are definitely staying a big step ahead of this- AWESOME!

My daughter was on Zith daily (250 mg) for a full size 13 yo- too low- went to USF over 4 months ago, Dr M and co. found active myco also- quite high. doubled Zith. They also added augmentin 1000xr BID (they were planning that anyway before the myco P labs came back). She is doing GREAT! You def need the zith. I would keep her on the Augmentin and get the Zithromax going= you can stop Augmentin if necessary when/if you hear back. Pex was helpful to my children- if you have any questions feel free to PM me. So you answer to #1 is NO #2: wish I knew! #3-6: YES! Mycoplasma airway infection can set off a cascade of airway inflammation that could create hyper-responsiveness (read: asthma)

great thought, dut! this happened here. oldest appear unscathed...younger ones dropped like flies I wonder the exact thing you mentioned about pregnancy and immune changes and illness. I had H1N1 during preganancy last time, interesting to see how that pans out....

Wow, I must have gotten a good deal. I am so disheartened to read these costs.