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Hayley

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Everything posted by Hayley

  1. We have autoimmune stuff on both sides....
  2. We have been doing great. I'd say for the past four weeks or so she's been almost back to herself. Even came through a 24 hour stomach bug ok early last week. Yesterday afternoon and today, though, she definitely seems off. I guess we'll see... I think we'll do her labs again in another month or so as well.
  3. I'm curious to know how common immune deficiencies are among PANDAS kids. Mine has CVID (diagnosed through PANDAS bloodwork though clinical presentation not indicative of the condition). Anyone else have this or another PID? If so, what's low? And, for those who have done IVIG, did your numbers hold with one treatment or did you need to repeat? My DD's IgG was below 400 and her IgA below 20 (she's 7). IVIG (HD) 7.5 weeks ago and both are currently in normal range though too soon to tell, I'm told, if they'll hold or if we'll need to repeat. Anyone willing to share their expeirences, p
  4. We are 7.5 weeks post HD IVIG and have seen tremendous improvement. I wish we had done it sooner! She had started on augmentin and we did see results with that. I would say it got her about to 75-80% after a month or so and that lasted for maybe three weeks, but then she got a virus and regressed in her symptoms. We did the IVIG and it has been remarkable. She came through the treatment very well and we started to see improvement rather quickly. I would say now my dd is about 95% back to normal and what is left is as much habit stuff that she's stuck in than full PANDAS symptoms. I would (and
  5. Such good ideas. Thank you. I really like the approach of looking at all kinds of art with her to show that some of the "best" art might not look traditionally perfect. The baby steps towards getting over the avoidance are a great idea as well. And I do plan to talk to the art teacher as well. The school has been really great and even though the art teacher is known as tough, I think I could get his cooperation for anything we'd need. However, part of the problem is that DD doesn't want any accomodations. She rejects any suggestion that she can take a break in class or have different rules. It
  6. Thanks, all, for these good suggestions. DCMom, with art I think it's part of a "just right" type thing. It's a self-doubt that her drawing is good enough. We've had some of this with writing (which is improving each week) but only in her homework. At school and for pleasure she writes prolifically (and draws too), but certain assignments she gets really stuck on becuase she says they are too hard. Sometimes she also says that she is worried she won't finish school work on time though her teacher assures me that she is totally on track and often finishes things early so I think it's a con
  7. I started writing this in response to the other post about school refusal, but realized I might be hijacking it so figured I'd start another thread... I'm interested to know with people dealing with school refusal: at what stage in your child's recovery did you start really pushing hard. My DD7 has made tremendous strides since having IVIG last month and in most ways is really back to her old self. Three outstanding issues are: difficulty falling asleep when anyone but me puts her to bed; still refusing to do extra curricular activities that she used to love; and resisting school on Tuesda
  8. Both parents were 35 when DD7 was born. History on both sides of the family of autoimmune (chron's, thyroid, celiacs). I, and all my siblings and parents, as well as my husband's siblings had major ENT issues (tonsils, adenoids, ear tubes from a very young age).
  9. Viral stuff: Coxsackie, EBV? Lyme?
  10. Does anyone have experience with this neurologist? If so, please PM me. Thanks.
  11. I'm sorry I didn't respond to this sooner! I was away and for some reason couldn't log in to reply on my iphone! My DD is younger and likely has CVID which I'm not sure is exactly the same as PID, but here's what I know based on our case if it's helpful... My DD7 had HD ivig 2/kg December 6th and 7th. We have approval to do monthly, but the plan as of now is to do it this one time and wait and see. Her IgG/IgA numbers are indicative of a CVID, but her clinical presentation doesn't support it (she's not been a kid who is always getting sick, she seems to fight illness ok, etc.). When D
  12. Thanks for the encouragement. She's definitely moving in the right direction, albeit with some bumps in the road. I'm finding she is really trying hard to push herself to overcome some of the OCD stuff when she's feeling up to it and I think that maybe some of the bumps are the result of her just exhausting herslef as she does that. Hoping we see more and more recovery as we get deeper into 2013! Crossing my fingers for the transition back to school tomorrow after this LONG vacation and a very late night last night for her (being tired is a major trigger, but we didn't have the heart to keep h
  13. landamom, I didn't ask Dr. L about why the turning back the pages happens, but anotehr trusted resource I have been in touch with explained it tome like this: "These are physical, real autoantibodies, like grains of sand STUCK onto the basal ganglia. What you are seeing, especially the old feelings, are being peeled away from the amygdula (at least recent research shows this) and the basal ganglia nerves." I still don't totally get it, but I guess there's some science there! I will ask Dr. L next time I meet with her. In any event, enough of us have witnessed this that there's no de
  14. I'm so sorry to hear what your son is going through nicklemama. I hope it passes. What does the doctor say? Did he have any of this the first go round or is this totally new?
  15. My daughter had HD IVIG 12/6 and 7 (11 days ago), did really well with it and had a great week last week. We are having significant periods (more often than not really) where we really see the old her, she's sleeping well, more reasonable and generally happy, fun. However, there are definitely still anxieties there (refuses to take the school bus, doesn't want to go to her gymnastics class) and between Saturday and this morning, we've had three pretty major bumps in the road where an anxiety (clothing OCD) or challenge (some cogntive stuff over homework) takes over and she gets first mad, then
  16. My DD isn't on omnicef for PANDAS, but that's what our ENT always gave for ear issues so I'm surprised to hear the docs are now saying it's not good for that. My kids always tolerated it well too (and it's only once a day!) so I'd give it a shot.
  17. DD7 had HD IVIG thursday and friday at Dr. L's office. treatment days could not have gone better. She was a real trooper at the dr.'s and came home happy and playful, no complaints both days. Saturday (day following the treatments) she wanted to lay low at home and had some headaches on and off, but they were manageable with motrin and tylenol. She also had a very low grade fever (just over 99). She was up in the middle of the night and vomitted this morning around 5 and again at 6:30. I gave her zofran and she bounced back pretty quickly and is now doing great. I'm assuming the vomitting is s
  18. Thanks so much for sharing your experiences. I appreciate it!
  19. I have read a lot of posts on here about people who find that their kids have underlying chronic infections (lyme, mycoplasma, bartonella, etc.) later in the game -- either after treating for awhile or even after IVIG. I'm wondering: are these infections that went undetected in bloodwork run earlier in the game? Were your kids not tested for them early on? Or are they new infections that popped up since treatment started? My daughter has tested negative for those mentioned above as well as the viruses for which we've run labs, but I'm wondering if I should still be concerned. My daughter is ha
  20. As soon as we can get approval from our insurance company (I suppose I should say IF, not expect this a when though our doctors are optimistic due to DD7's CVID) we will be scheduling IVIG. She will be getting the high dose over two days. Even though she's doing pretty well in terms of her PANDAS symptoms right now, she hates doctors' offices and needles and I really do not see her cooperating with the whole endeavor. I'm more confident I can get her there willingly the first day, but am thinking getting her back for a second will be very challenging, especially if she has immediate side effec
  21. My daughter is 7 and her IgG was 392 adn IgA 12. When we tested again a month later, the IgG was around the same (within a couple of points) but IgA went up to 23.
  22. Anyone out there whose child has low IgG/IgA that opted AGAINST IVIG? And/or anyone who did IVIG who got to 100%? If so, I'd be interested in hearing from you re: your experiences. Please PM me! Thanks.
  23. Thanks all, Peglem, yes, that's what Dr. L (and previously Dr. T) explained to me re: the behavior being the presentation of illness. I get it, just think my ped is still skeptical. Does your DD have low IGG/IGA? I'm wondering after reading these posts if maybe I'm incorrec that Dr. L is recommending low dose; that maybe its a medium dose, but she's just describing it as "not a lot" which I think is the phrase she used. She would get it in a single day over 3-4 hours I believe. I am going to check with Dr. L's office to see what the exact dosage is.
  24. So a little background first... 1) my DD7 has been on Augmentin 2x daily for just over a month (9/12 when we saw Dr. L for the first time). About two days after starting the abx at the level she is now on (she was previously on a very low does of augmenin and azithromycin), we saw signficant improvements. Week before last, she was, I would say, probably 85% back to herself. Weekend before last, she started regressing. DS4 (not pandas) had an awful cough/virus type thing and we are assuming it was the exposure to this though DD isn't actually sick with what he has. 2) Also, Dr. L had c
  25. What a road you have been on! And what a miracle he is finally well! Thank you for sharing your story!
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