peglem

Amy, I'm glad you're the kind of practitioner that wants all the info to be considered, but I know I'm not the only parent on this forum who has run into "professionals" who roll their eyes and think you're just making things up and then work doubly hard to show you they can fix your child's behaviors w/ the right "discipline." If you're working with private therapists and doctors, you can simply find somebody else, but when you are dealing with the schools, you don't get to choose. In my daughter's case, we're dealing w/ special education, and even though I try to be up front with staff, I've still had some teachers that I regret having told all to. I will not give permission for school to talk to my daughter's physicians. ABA has been the bane of her school career.

Ahh, sorry she's having such a tough time with it. Praying that she adjusts to the procedure and it helps her a lot!

We are so cool! Thanks again, Vickie for all your work! And thanks for not applying for the 250K- how frustrating trying to make the top 2!!

I'm praying for you all too!

Can you clarify? I thought an eeg recorded and measured electrical activity in the brain. My daughter does have an abnormal eeg, (no seizures found, though) but no structural damage seen on 2 separate MRIs.

I cannot go into specifics due to HIPPA, but due to my work, I firmly believe this causes permanent brain damage. I work with people with developmental disabilities and have been re reading a LOT of files lately. Not many have very good bloodwork draws in them, but some do and I'm finding interesting numbers in some of people with autism spectrum, ocd and other mental illness Some of the younger individuals HAVE diagnosed pandas. Well, I'm still not sure it causes actual brain damage, even though I think it caused my daughter's severe autism. I think it does interfere w/ development, so if you get it young and it goes untreated, it can really mess you up good. We are beginning to see some of that early childhood development creep in now that my daughter is getting treated- I don't expect she'll lose the autism altogether, but I think the brain is still structurally intact.

I haven't watched yet (not 10:00 here yet), but maybe if you exclude kids w/ low titers and those that need IVIG or PEX, it is a rare disorder!

Well, my daughter's IVIG's have been covered 100% by insurance, so I don't know the cost. She has supplemental insurance from the state that pays any medical cost left after our private family insurance has paid. This is because she is severely autistic- we think due to PANDAS interfering w/ her early childhood development. We are, w/ treatment, seeing snippets of that development occuring now and are hopeful that we'll see lots more. So, you are doing well now, w/o any treatment?

Those are some very good questions, ones many of us here grapple with as well. It can be difficult to get IVIG covered by insurance and I believe it needs to be prescribed by a specialist- (immunologist, rheumatologist, neurologist). Finding a doctor who is willing to cooperate is tough. You can't just walk into an IVIG clinic and ask for one! Yes, it is a human blood product. Here's a site that tells risk/safety info: http://www.cidpusa.org/ivig_complications.html There has been quite a bit of discussion on this forum about this- not just how many it takes, but how do you define "effective". We're still in early post IVIG phase, so its too soon to tell for us. But my daughter has had 4 so far- the 1st 2 were pretty low dose and the 2nd one, especially made things worse. The last 2 (second one just completed last Friday) were the higher dose recommended for PANDAS and other autoimmune disorders. But, I really think the answer to this question varies from person to person and has many variables- ie...state of immune system, severity of symptom presentation, etc. I hope not. My daughter is 15 and has probably had this since infancy- we discovered the strep problem 5 years ago, but she really has not had adequate treatment for it until starting last fall. But, I think there are some people on this forum who have teens who have responded favorably to IVIG...hope mine turns out to be one of them. We have seen some improvement in symptoms so far but its been very up and down. Thanks for coming here to post- we do have a few posters who have PANDAS, but most are parents of PANDAS. Its always great to get the perspective of the patient!

Here's my understanding, completely from memory- Although S. pneumo and strepA are different bacterias- both are the encapsulated type (what's that capsule called? I can't remember), so the S. pneumo vaccine challenge test is checking for the ability (or inability) of the immune system to respond to encapsulated bacteria.

I think Dr.B will be able to help you sort this all out and I would not give any psych meds, at least not the kind that can cause withdrawals, until you've got it sorted out. If there is something that can help her be less miserable in the short term (we use valium and I feel blessed to have doctors who will prescribe for my daughter) w/o an adjustment period, you might want to consider that as temporary relief until you can get her the help she really needs. Risperdal is not that kind of drug. Sorry to hear what's happened to your daughter (and you, too). But, so happy that you've found this support forum- lots of wonderful people here who will guide you and help you deal! If you haven't already, I suggest you check out these posts, from the "helpful threads" pinned at the top of the forum: http://www.latitudes.org/forums/index.php?showtopic=6265 http://www.latitudes.org/forums/index.php?showtopic=6266 God bless, and please keep us posted on your child's treatment and progress.

It sounds like PANDAS to me. I'll bet he was tired from all the activity and that just made it worse.

My daughter tends to have "safety ocd"- a lot of her anxiety comes from exaggeration of safety rules. But, it has helped with what looks like defiance sometimes to tell her its not safe- like the lightning issue- it really isn't. The danger is that she'll then have lots of anxiety over the lightning- but it'll be in the house. I just wish it was as effective to tell her something IS safe- like elevators!

I think you're exactly right! Makes them kind of pitiful, doesn't it?

Too bad we can't fire relatives the way we do disbelieving doctors!

No, not the fireworks. She had thoroughly enjoyed them 2 years before and plopped doen there in the lobby at @ 6:30 to await the festivities. (yeah, that was fun, too. ). It was when they roped the area off to maintain crowd control and traffic pathways. She had to go to the bathroom...and suddenly the way to the bathroom had changed!

I hope this will make you feel better...telling you about our disaster vacation 4 years ago, just so you can say, "at least ours isn't that bad" My hub wanted to get a vacation in before my daughter's T&A a few years ago...I didn't want to-she was REALLY bad, w/ ragey meltdowns out of the blue. We went to Disneyland and we had to be escorted out of the park, through the huge fireworks crowd, by a circle of park employees around us, carrying a raging, terrified, thrashing child! Seemed like it was a twenty mile, uphill trek! Really hope things get better for your son and you. Try to relax. Maybe you could find one of those "mini-clinic" pharmacies and get him tested for strep.

I think, as said b4, that almost any abx can result in cdiff problems. But, my daughter has been on various abx's for 5 years or so, mostly zith the last 2 years, and just tested neg. for anything nasty per stool sample. And, I'd just like to recommend, to be extra safe, use s. boolardii, w/ the abx to help guard against cdiff.

Well, either the strep are not producing the exotoxins that those titers are raised against or the body is not mounting an attack against them.

Whooohoooo!

YOU ROCK, LADY!!!!!

Done!

I didn't do the survey because nothing fit. But my 15 yo daughter who we think has had this since infancy, had 2 very low dose (standard for immune deficiency) <.5mg/kg. One in March and one in April. She was a bit worse after the 1st one, then much, much worse after the second one. We did a 7 day steroid burst shortly after and things improved slightly. In May we had 1.5mg/kg, again with a slight improvement, but I was still kind of freaking out because prior to the 1st IVIG we had 3 months of wonderful (relatively speaking). So, we repeated the abx regimen that brought us our 1st real remission in many years- rifampin/augmentin. This we had used last December, and until we saw the results, we didn't know how good my daughter could be....we saw some early childhood development beginning, that had been disrupted when it should have happened. A few days after finishing that combo, about 3 & 1/2 weeks after the HD IVIG, she suddenly snapped back to terrific- so I don't know if it was the IVIG or the abx that did the trick. But tomorrow and Friday(okay, really today) we're doing another 1.5mg/kg. I'm going to hold on this time, if I see exacerbation, and just wait it out- unless it goes longer than about 4 weeks. I have to tell you, seeing your 15 year old finally sharing a smile with you and relating to you, seeking you out for comfort when its never happened before....learning to say mom, wanting to be cuddled... Well, I don't care if its just managing the disorder instead of a cure- its much more than I had before, when everything was completely unmanageable and there was no hope.

From this site: http://www.immunedisease.com/patients-and-...deficiency.html

I have looked into this a bit because my daughter does have low IgA, well below normal range. The problem w/ IVIG and IgA deficiency is if the patient has autoimmunity to IgA. Then the Immune system may attack any IgA that is in the donor immunoglobulin, and cause a reaction. Allie's immunologist does prescribe IVIG that has a very low IgA, just in case, but believes it is still safe- that even among the IgA deficient the risk is minimal.