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Yes, ferritin was an issue for rls in my 6yo. Even though was in range (25) they wanted it to be higher, closer to 75. We used mykidz10 to supplement. Behavior (adhd) and sleep problems resolved after tonsilectomy and iron supplementation

Why do you connect it to the medicine?

Also first had zero strep evidence at onset or exacerbation. Second had strep at onset and first exacerbation. Not at subsequent relapses.

only have a minute-but qquickly They were 10& 1/2 at onset about a year and a half apart.f One got sick in aug 2008. Steroids in may 2010. Ivig may 2011. Pex 7/11 & 10/11 2nd sick 10/09 steroids7/10 pex 1/11 ivig 5/11 1st is 90% 2nd is 100% After many attempts at diff meds, they both took clomipramine for ocd. 2nd is off everything for close to one year. 1st is on clomipramine, augmentin and cellcept; still getting monthly ivig and iv steroid for autoimmune disorder. Specifically, prozac and luvox were disastrous. Terrible.

Amtrak? Sleeping cabin?

Did they check autoimmune markers? Sed rate Thyroid ana dsDna My daughter has anti-phospholipid (cardiolipin) antibodies. Autoimmune Encephalitis can certainly "look" like PANDAS.

We saw improvements at 3-4 weeks. Significant, quantifiable but she was still very sick. She had pex .twice and each time it was almost a month. I have another daughter who had pex much quicker in her illness and she had major improvements by one week and near total (temporarily) remission by one month or so. how old is your child? How long has she been sick? Psych symptoms?

FrikFrak, have you decided what to do? Ophelia, this is a step in the right direction. this is essentially the same diagnosis that my daughter was given- encephalitits (though she has never had a PET scan) and a primary autoimmune disorder . Hers was finally identified, but that is not always the case. so glad to hear that you were not blown off, but understandable why you are so scared. are you just waiting on logistics, (ins, scheduling) now?

Hi rachel, I wanted to give you some hope. My daughter was not treated with any autoimmune tx (steroids, IVIG, pex) until18 months or more post onset. It has been a long road, and now 5 1/2 years post onset, she is much better. this is after all of the above tx and more. She has now been found to have specific antibodies and with consistent treatment and immune supression, she is doing wonderfully. Some of your son's specific symptoms sound quite familiar to my daughter's. Some are not. Does he have psychiatric symptoms? Was this sudden onset? Has he had any bloodwork done for autoimmune illness (thyroid, sed rate, lupus, there is much more) I will say that diet had ZERO effect on my children (I have had other children affected, just not as quite severe) Obviously, good nutrition is very helpful, but GF was a complete waste of resouces when we tried it. I second t.mom's response above and will also send you a PM.

If an nyu neuro doc is so invested in this with testing and intensive tx. I would do it. My 15 yo daughter does monthly ivig now (with monthly steroid iv also) and she has improved by leaps and bounds. She is also on cellcept since monthly infusions started. I say go for it! We have seen some flaring post infusion. Each flare has been shorter in duration and severity. Sounds like a dream to me frankly.

Your foray into Lyme sounds very similar to my daughter's- + Babesia, then + IGM Lyme, with treatment. My daughter did eventually receive IV abx for this. One suggestion I would make to you- have you reconsidered trying the steroids, now that he has been treated by Dr J? In a high dose? My daughter tried steroids (given by LLMD) when the comprehensive Lyme tx she was recieveing was not cutting it. the steroids were a teeny, tiny dose, and did not seem to do a darn thing. She was a total mess. Then, several months, later, we went to PANS neuro and tried high dose (60 mg x 7 days and working down the dose over a month). By day 10, we saw very obvious, sound improvements. The effect did not last for ever- she ended up repeating steroids mulitple times, getting IVIG and pex (mulitple times each), but it did two things: 1. clarified that we were at the autoimmune point of her illness 2. brought her some relief from her severe symptoms (which some are quite similar to your son's, also) Now, fast forward a few years & she is treated with monthly IVIG (1g/kg) and IV steroids, daily augmentin (1000mg XR twice a day) and an oral immune supressant. She has anti-phospholipid antibodies and has been diagnosed with encephalitis. The best thing? She is doing great! Small tics, depression and OCD, but she goes to school every day, smiles, takes care of her self and enjoys herself and even has a good friend. As an FYI- my daughter's LP has been totally normal-- so a normal result to those tests does not rule out everything . Best wishes

I am not disagreeing with you, but I am so curious about this. I have heard this (anecdotally) from many, many friends. Do you know of anything scientific that backs this up?

I sent you a private message, beerae22. Top right of your screen look for the red notifications

Call dr L in MD. she may be able to see you sooner. How old is your child?

1voice, how long has it been since she has been symptom free? EXCELLENT . how long had she had symptoms? just interested since she is so little.

One month , in my opinion, is not quite long enough to determine whether or not augmentin is working. If you think he will cooperate wiith cbt at usf, I would do their study in a heartbeat. Cbt there is excellent and a chance to try the d-cycloserine!. It has shown very promising results.

my daughter had improvment at about 3-4 weeks post pex in 2011 (each time- she had it twice). it was def noticeable, but she went from being room bound to being able to go out a little and shower once a weeks- versus not at all in 4 + months. So the changes were great, but no miracle. She returned to severe baseline after a few months. did he have pos repsonse to steroids or some other confirmation it is autoimmune? I assume, since you mentioned ritux was the next stop. Does he have any markers for autoimmunity? sed rate, ACE, antibodies I just read that he returned to pre-steroid level after the burst was over. My daughter (15) is now doing wonderfully after 6 months of high dose (1g) solumedrol and 1g/kg IVIG monthly and 6 months cellcept. starting in Feb, her infusions will be spaced to every 6 weeks. I do not see how pex itself could make anything worse. Medically, I think that is not really likely. Have you tried high-dose twice daily Augmentin?

Never seen dr n but I imagine those results may take a few weeks for all to come back and he may want to reserve judgement until all results are in. do you have a follow up appointment scheduled?

My 8 yo also has this. She has moderate large muscle group tics (& tongue darting-I think that fits into SC criteria? ?) She has described both the tingling and squeezing your son mentions. She has no psychiatric symptoms at this time. She has in the past, also with tics.

My daughter (s) have taken or currently take clomipramine, at a low dose. It is an older, tricyclic antidepressant that has been shown to help OCD. I think it does. Maybe you can try that? Low and slow.

PANS tx (IVIG in this case) helped when my daughter developed a sudden anorexia at age 11. any idea when Dr N testing will be rescheduled for?

I would move on. I agree with pr40's response. Hope you can find a clear path you are comfortable with and most importantly recovery.

you need to dump that pediatrician. Even not from solely a pandas standpoint. I like the idea of getting that refusal in writing!

PM'd you

What tx did he get to end the 6 weeks of symptoms? I have a different opinion of many (most) on this, but if it feels like hocus pocus (&he is doing well) , perhaps you should hold off. Maybe it is hocus pocus. If he was on abx, maybe you can get into another PANS doc sooner and get him on daily abx. Go with your instinct.