Hayley

We have autoimmune stuff on both sides....

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.

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, please respond or PM me. Thanks!

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 will) do it again in a heartbeat!

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's all or nothing! Thanks again!

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 confidence thing, though maybe some brain fog is playing a part. From how DD has articulated the art issue, I think that having expectations around how she is supposed to do art - something that for her is generally a free and fun thing -- is just really overwhelming. The example of something that is "hard" she was able to give me was an assignment where they had to draw fireworks "one big, one medium and one little." This is so obviously within her abilities, but for whatever reason she is stuck on it. I suggested as a start that we get some class assignments so she can do the work at home, but she was no less intimidated. It's the work, not the environment.... Re: extra curriculars, like you described I think I'm more upset about it than she is. All the activities she used to do in classes she does on her own still (and other parents, kids, teachers are constantly telling her she has natural abilities and she should consider classes!). She's very social and her friends are always trying to get her to take classes with her too so I'm hoping that eventually something will click!

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 Tuesdays when she is having major anxiety around Art (of all things!) which she says is just too hard (the art teacher, according to my older daughter is very rigid and strict)! She has overcome several of her VERY MAJOR ocd/sensory issues so we are trying to focus on those gains over what she's NOT doing. The sleep thing we are forcing more and the extra curricular stuff I don't feel the need to push right now, hoping it will come in time, but the Art thing is an issue. It's the last activity of the day so twice I have agreed to pick her up early if she went to school with no fuss. The first time it was becuase I thought it was just an isolated issue and I'd hoped she'd be fine the next week. This week, she didn't share the anxiety until JUST as we were walking out the door and I had to be at my son's school for an event so I didn't have time to argue which meant to either relent or throw off the schedule of everyone in my household! The school is all in support of her missing school to preserve the rest of the week, but I know I'm going to have to put a stop to this and just can't figure out when or how! She used to have a thing about PE, but that resolved with the help of our CBT/rewards chart. Art is on the table as something for which she can "earn" rewards, but she's not yet taking the bait. So do I let her work through other challenges and get to this when she's comfortable or force it?

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).

Viral stuff: Coxsackie, EBV? Lyme?

Does anyone have experience with this neurologist? If so, please PM me. Thanks.

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 Dr. L and Dr. T first saw the numbers, both said, it's CVID and she is a candidate for montly lower dose IVIG. At the time, she was a couple of weeks into her abx protocol and was showing improvement (and not sick with illness) so we decided to wait and retest the immunoglobulin numbers in a couple of months. She ended up getting probably to 80% of her old self on the abx for about three weeks then got sick and her PANDAS symptoms flared at which point Dr. L changed her recommendation to a single time high dose approach -- focusing on the PANDAS, not the CVID. Meanwhile, we went to an immunologist who said based on her numbers, he would NOT treat her with montly IVIG at this point, but would wait and see, watch the numbers and her health and if the numbers don't go up, maybe he'd do it down the road (I think at a lower dose every 3-4 weeks). He felt she might outgrow it and it did not make sense to jump into that protocol at thsi point. Dr. L (our treating PANDAS doc who ordered the IVIG) isn't 100% sure that she really has PID and thinks that (and I hope I'm not misquoting here, but this is how I understand it) that it's possible her numbers are skewed as a result of the PANDAS. Dr. T agreed that he would do the IVIG once at this point and see how things progress. All of this said, when we first got the bloodwork that identified the low immunoglobulin numbers, in searching for an immunologist, I came into contact with the doctors from NIH's Primary Immune Deficiency Clinic -- not a trial, but a clinic where they are looking at PID patients; they don't treat, just review the case, run labs and work with your doctors around a plan of action for addressing the PID and any other related stuff. DD will be seen by the NIH folks later this month. They are NOT affiliated with the NIH PANDAS study and I'm not exactly clear what experience any or all of the doctors have with PANDAS there (or if they'll bring in Swedo's folks to consult), but I'm hoping that having DD seen there might help shed some light on the PID-PANDAS link. I'll be curious to see if they will encourage more frequent IVIG. I will report back here with any info I think might be helpful to the group. Good luck, MDMom! I hope the IVIG is helpful for your son!

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 her back from the new year's eve party we were attending...hope we don't pay too badly for it!). I am sure we're not the only ones approaching tomorrow with some trepidation! Good luck to all!

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 denying that SOMEthing real is going on. Just hope it passes quickly!

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?

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 really sad and withdrawn. The doctor seems to think that this is a bit of the "turning back the pages" people talk about and that it should get better. I'm trying to be optimistic, but am simply heart broken watching her like this. For those who have done IVIG, did you experience this type of up and down in the initial weeks? How long did it last? Did you find certain symptoms held on longer than others? Would love any encuoragement folks could offer from the other side of the roller coaster! Thanks. Hayley

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.

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 still within normal range so I don't want to bother dr. L over the weekend. Wondering how long we should expect to be up and down like this though. I think it varies greatly from kid to kid, but would love to hear others' expereinces. Also, did anyone find their kids sleep patterns were thrown off after IVIG? Both thursay and friday night, she had a hard time settling in for bed and got to sleep late (not normal for her), and she's been getting up super early. I'm thinking she's just not feeling quite right, but also really want her to get some sleep as I'm sure her body needs it! Not really wanting to introduce other supplements for this with everything else going on in her system, but sure hope she gets back on track soon!

Thanks so much for sharing your experiences. I appreciate it!

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 having IVIG next week and I'm both optimistic and petrified, thinking through all the "what if's." I know people have said that underlying infections can be a major factor in the level of impact so I'd love to understand better how these things hide and make sure I'm doing what I can to uncover anything we might be missing. Thanks for advice, wisdom and experiences anyone might share!

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 effects (e.g., headaches, etc.). Of coures we're prepared to just drag her in kicking and screaming, but obviously that's not idea! How did people manage this? On the same topic, I'd love to hear about experiences with side effects from HD IVIG -- how bad were they, how long did they last, how quickly kids could return to school, etc. Thanks in advance!!

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.

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.

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.

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 called for bloodwork mid-Sept which showed VERY low IGG/IGA. She initially wanted to do IVIG based on CVID but we questioned this just becuase CVID would generally be indicated by her getting sick all the time which she simply is not (never missed a day of school all last year). Both Dr. L adn Dr. T (who we'd consulted with via phone) said let's not treat the numbers, wait and see since she's doing well on the abx and we'll retest IGG/IGA in Dec. now... When DD began regressing last week, we went in to see Dr. L who felt that her current flare indicated she really does need IVIG. Wants to do low dose monthly through the school year. We're digesting all this, but overall feeling like we trust Dr. L who seems to think that this will make a big difference for Layla. Today, we happened to have DD's well visit with our ped who is generally supportive, but clearly doesn't totally get it. She is questioning the need for IVIG and asked if Dr. L "could send her some research/documentation addressing why IVIG should be used." I told her she should reach out to Dr. L if she'd like (she actually says she plans to email dr. swedo who she evidently knows via a friend/colleague...we'll see!), but frankly, I do not feel terribly inclined to bother Dr. L with educating my pediatrician. However, I am compelled to send her what I can get my hands on as I do generally like her and think she and I will both benefit from her understanding this all a bit more. Her words to me were "It's not that I'm questining it, I just don't understand it." Which I do think is pretty accurate. I also think she's being influenced by a bad experience she told me about with a hashimotos patient who was getting IVIG that she worked with during her residency (apples and oranges?). I'm googling for research of course, but finding mostly info on higher dose IVIG for PANDAS. Does anyone have any info on research done around lower-dose/monthly treatments? Thanks in advance! Hayley

What a road you have been on! And what a miracle he is finally well! Thank you for sharing your story!