Hrosenkrantz

ariel95 -- why would someone do a low dose ivig vs a high dose?

Yes -- i have no issue if a doctor wants to say pandas treatment wont help your kid, but this treatment will. The problem i have is with doctors who dont offer any treatment, and just say why pandas/pans treatments are bad

On quannie's point -- I'm up reading my Facebook feed full of parents absolutely apoplectic over the fact that they have to deal with TWO SNOW DAYS in a ROW!!! How can them cope and manage? My PANS son has been on medical leave from school since Oct 15 -- hasn't been to school in two months. It sucks, but we've gotten through it.

Pardon me if I'm not fully knowledgable about the politics of all this, but why would this Singer guy be so -bent on disproving PANS? I've met doctors/pyschiatrists who don't really believe in it or who don't think the treatments work, but why is this guy so oppsed to it?

Agree with joybop. Do the tests and then worry about the next step.

On the disability coding issue for a PANDAS IEP -- OHI (otherwise health impaired) is a possible code for the IEP.

Congratulations Nancy! I;m sure you live in fear of the "bad stuff'' coming back -- great news that it hasn't...

Ophelia -- your post bought tears to my eyes and put a lump in my throat. So happy that there is a happy ending in your long and painful journey -- well i realize its not an ending, but it could a major turnaround from all your extreme suffering. Mazol tov.

My child's IQ has also waxed and waned. He tested too high for services when his district first tested him; a month later, they scored him, I was told. ``borderline m.r.'' -- how does that happen in a month, going from too high to get an IEP to such a low IQ? We did a full neuropysch about nine months later and he scored a 103. I'd also be interesting in IEPs that reflect the waxing and waning...

So i reached out to a friend who ha a kid diagnosed with pretty significant asd and suggested she pursue autoimmunity/steroids. One problem: her doctors don't believe the kid has an autoimmune issue and a consult wit ha doctor who might is prohibitively expensive.

out of curiosity, when doe a doctor bypass oral abx and go to iv?

<<So for a parent that is low income, this could be an incredibly difficult journey>> That is why I bet lots of lower income kids are just mislabeled and never properly treated.....

Very interesting. Language issues has been my son's primary issues for years, before PANDAS (he was diagnosed with something called mixed expressive receptive language disorder at 4). Of course, when pandas hit his language went south. He just finished five weeks of steroids and i keep saying it seems that I've seen more gains in language from five weeks of steroids than i have from four years of speech therapy.

3bmom -- how should the diet change?

jag -- confused -- how does a fever make the kid more "normal/non autistic?":?

I think the key here is treatment -- does the questionably "autistic" kid respond to PANDAS treatment. My son now appears pretty what is known as PDDNOS. He was never diagnosed with autism (but he was diagnosed with a language disorder and adhd pre pandas. My son has improved with some antibiotics, with IVIG, and significantly with steroids -- never getting back to his pre-pandas, ADHD/language disorder baseline The fact that I saw SUCH a change with steroids -- especially in the area of language -- bolsters the autoimmune argument. I do know kids who are diagnosed with autism and their parents fully support that diagnosis. They do not think autoimmune treatments will help their child (and no doctor has recommended that) and are focused on therapies to make them more functional.

When we first treated our son for suspected pandas last year with antibiotics, it was a month and a half of antibiotics before people started noticing the improvement..

No the Annapolis area, but my son's developmental pediatrician first introducted us to PANDAS when we weren't sure what was wrong with him last year and treated him with antibiotics. There is an immunologist on staff too. Its the Pediatric Care Center in Bethesda

mdmom -- just tried to pm but your inbox is full

mdmom -- its so interesting to me that your child's sensory issues are almost nonexistent after 2.5 years of aggressive ivig. My child has had sensory issues, for years, but when he is in a flare, which he is now, they are off the carts -- aggressive sucking of his shirt, wanting to take off his clothes a lot...

The thing I'm learning about PANDAS/PANS is that even if you have had 100 pct remission, you can still have a flare for some unknown reason down the line. I know how incredibly demoralizing it is but we have to work through it. We also have toyed with alternative diagnosis, but while doctors have to kind of strain to make those work, and dont really have a solution when they propose them, the pandas/pans stuff is very obvious -- as in other parents saying ''oh yeah my kid was exactly like that'' or pandas-neutral doctors saying "that's CLASSIC pandas". I too have lived in deep fear about what my son's pandas problems will mean for him at school. And you know what, it DID impact him -- he was semi-kicked out, told only to come in the afternoons. And while that's incredibly distressing, it's also kind of liberating, because now i can do the five-week steriod program we were prescribed without worrying about it impacting him at school

One thing im wondering on this lyme question -- if the aso titer is high, does that mean it IS strep (pandas), or does that not mean anything? My son has high aso titer, but also positive igenex for lyme (igenex also said positive cdc)

trinitybella -- when you tell them child's symptoms and they look at you like 3 heads -- even if they don't believe in/treat pans, surely they must offer some explanation for the symptoms?

4Nikki -- just wanted to offer my empathy. My seven year old son, even with his rages, is still described by professionals, and everyone who knows him, as an incredibly sweet child. He is so loving and sweet, but he has experienced rages from his PANDAS and possible Lyme that are insane -- unprovoked biting, shrieking, screaming. He has given his brother a swollen eye by biting him for no reason; this weekend we were at the local market and he went in a second from a smiling little boy at the ice cream counter to raging in a second and biting a child who happened to be wandering by. Risperdol has just been presecribed to us for this,,,

My opinion, yes -- though I'm not a doctor, nor a patient person, according to some people. But another person who went down a very long road to recovery recent told me to expect a month or so of herxing with a new medicine -- so two months seems too long to me, imo