kos_mom

Having one autoimmune condition sets you up for another. So with the autoimmune neutropenia you need to be on the alert in any case--if it is not PANDAS today it could be something else down the road. But the regression off abx does sound suspicious for PANDAS. My DS had language processing problems--I though perhaps too many ear infections but I wouldn't be surprised if PANDAS played a role. All too long ago to really say. You said your DD is on Tenex. Everyone reacts differently to meds, but this was not a good one for DS. He was on Prozac and had a lot of side effects (all of which the psychiatrist said was part of his "syndrome" never identified as PANDAS.) I wanted him off it so we weaned him down and put him on Tenex--he was 11 and had major problems with language when he took--it was like everything slowed down so much for him it was hard to express himself. So I'd take a look at that. I'd also give the infectious diseases guy a shot--but if he really doesn't know PANDAS as well as people on this board or if he is unwilling to experiment with longer term abx, you should feel free to disagree and see if there is another doctor that is more open. The sinus problems give you an in to an ENT, a number of them are quite familiar with PANDAS.

Dr. L also thinks some immune deficiency must be going on--but on DD's tests she was lowish (but not out of range) on only one IGG subclass. Her IgE was well out of bounds, but not sure what that counts for. In any case, Dr. L is convinced enough she is re-running all the tests. I almost laughed at keeping track of missed school or work. DD's been home for over a year, mostly in her room and more specifically her bed. She's being tested for many things including hereditary and mitochondrial disease--brain scan apparently indicative of possible metabolic disorder. If we come up empty on this round of tests, we will definitely go full bore into investigating lyme and co-infections. As for mold is it relevant is very allergic to two types--alternaria and aspergillus. I think the latter will be tested for on her spinal tap. As for United, this week it knocked Kraft Foods off the Dow Jones Index, an indication of its weight in the economy. It is the only health care company on the index. Somehow this seems related to the thought that it should be covering IVIG for kids who need it. I really like 1tiredmama's letter. Do we have anyone whose kid could be the poster child for recovery owing to IVIG paid for by United? I really don't understand how they go from proven to unproven with no tests or studies having been released.

Amy's probably right. But I have read elsewhere on these boards of kids getting strep even while on abx. It's easy enough to run down to an urgent care place and have a swab taken. I did that recently when my DD complained of a sore throat and the culture grew yeast! I have been religious with probiotics while she's been on anti-strep abx, but wasn't told to do that with abx she took earlier for pneumonia--perhaps the yeast was from that. Have probably been undertreating with garlic tablets.

PowPow, Thanks for the ention of Rogers. My DS is slated to get IVIG and I've been thinking of getting him into program to deal with remaining OCD. I had thought of USF, but at 22 he's really too old for me to go with him and I was wondering how to arrange housing if he went. Rogers might be a better way to go.

Iowadawn, Do you feel comfortable naming the neuropsych residential program? I ask because every doctor I went to for a long time was convinced DD's issues were purely psychiatric and DH wanted her put in a program. I was convinced issues had medical origin (ultimately proved right!) and so as an accommodation to both views looked hard for a psych residential program that would really do a thorough job on the medical side. I couldn't find anything except the Pavillion at McLean that is largely a two week diagnostic program. There is also the Retreat at Sheppard Pratt but it looked like I would have to push constantly to get the medical side looked at. If you aren't comfortable could you PM me--would like the name of a place just in case. Thanks.

I'd say yes--a child can have symptoms without the emotional part, depending on how one defines it. My DD would sometimes get a pounding heart that came on so suddenly she'd drop straight to her knees on a wood floor (ouch!). There would be a trigger of some kind, usually being late in getting ready to go some place.

The copy I got went from page to 20 to page 24 skipping the pages in between. At the bottom of page 20 a list begins of "Infectious and Infection-related Diseases--Proven"--I don't have the page after that and it is possible (likely?) Sydenham's on that list. On page 24 there is a list of "Miscellaneous Uses--Unproven" (PANDAS is on that list, Sydenham's isn't and the list is complete), followed by "Neuroimmunologic Disorders--Unproven." Theat list does not appear complete (ie, it must run over to page 25, which I don't have)because it ends with conditions beginning with "L." If Sydenham's was covered before by United, I do not think there is a change--the policy update for IVIG coverage appears to have been issued to revise only the change with respect to IVIG treatment for PANDAS as noted on page 20 of the update.