peglem

Okay, but she had already seen my daughter's low IgG and low IgA- and questioned why the immunologist had not treated based on that...she thought they were VERY low. But, you could be right, especially if she was thinking outloud-to add that piece to the puzzle. But your answer then prompts me to ask if IVIG will also help with the yeast issues?

Well, that's why I'm confused! Abx use is associated with yeast and PANDAS kids tend to use a lot of abx, so it follows... I must have misunderstood what she meant- she seems to do a lot of thinking outloud.

When we saw Dr.L yesterday, I told her that Allie had gotten vaginal yeast when she was on augmentin and that diflucan did not clear it until we switched back to zith. She said PANDAS kids usually don't get yeast infections. Huh? I've never heard this before. Anybody else heard this? Seems like lots of us here have had yeast problems.

I think its really a case of doctors not wanting to take responsibility. My daughter has so many issues and is so hard to even examine, everyone wants to pass the buck. The immunologist says that if she really had an immune deficiency she would be ill all the time and sick enough to be hospitalized. I guess he felt that the clinical picture didn't match up to the labs.

I do some online talking with adults who have aspergers and autism symptoms. It helps quite a lot to understand my daughter. This seems to be very common among them and they call it "blueprinting." But, they seem to use it as a kind of tool to keep anxiety over an event in check. So, if they have it all planned and know exactly what will happen and how, the anxiety is lower. The problem is, life is very dynamic and these blueprints seldom come off as planned and then there is a lot of anxiety. So, I'm thinking part of the reason your son wants the play date at his own house is that he has a greater sense of control over the blueprint that way. He can plan what they will play and what not. Also, at his own house he knows the rules and expectations better than at another person's house. Sorry if that is way off base. Just thought I'd throw it out there as a possibility.

My mom is staying with us till the beginning of February! Then you're right, there is nothing more to ask for!

How's that working out for her?

We did not get a hard copy of the report, she did not have time to write it up, but said she would mail one to the pediatrician, one to the immunologist and one to us. The appointment lasted 2 hours. And it seemed little enough time to really go over 15 years of history. She did go though the MRI video and said her brain looks good! I almost think the trip home may be harder, since we don't know this airport very well. Somebody will have to go scope it out 1st, so we can plan.

Hmmm...not all that much to process. But, good news- no PEX, she thinks that Allie will be too difficult to manage, and will most likely pull out the (geez, I'm tired, can't think of the term) "thingy". She feels my daughter is a rather difficult case because it has been going on so long, and because development has been derailed from the get-go. But, she did give a PANDAS dx and recommended 6 months of monthly IVIG (which we will be able to get at home TG). She also recommended staying on zithromax prophylactically, and said it would be safe to go up from 500mg every other day to 500 mg/daily. She said, while the CamK was rather high, she could not base treatment on that number since they are not sure yet what it means, but with the highly elevated anti-D2, it was clear she had anti-neuronal antibody that should not be there. She wondered why the immunologist would not treat based on her low (she thought very low) IgG. She also said she didn't know what to make of the pneumococcal titers...nobody is sure what those numbers should be. I told her those were drawn for baseline and then rechecked for response to vaccine. She said that made sense. Then quickly moved on. Anyway, we're going to go ahead and see if we can move up our flight and go home before Thursday (like we scheduled, just in case).

No, not till 1:00 EST.

Elevators, not just using them, but being anywhere near them. We always take the stairs, but unfortunately they are usually located near the elevators. Even elevators on tv scare her. Coffee cups- this is a recent one- we cannot drink from a cup that has a handle. I don't know what the source of this is, or why. Grandma's walking stick. She has recently overcome a fear of Carosels, which I think developed from watching Mary Poppins.

Yes, this is what I think! And the intracellular strep is slowly and constantly released, keeping the antibodies present always, at least in small amounts. Then there is some tissue damage (strep containing cell destruction) from teething, dental work, or other stuff, and WHAM lots of strep gets released and we see a symptom exacerbation. When that's over we go back down to less symptoms, but not eradication altogether.

We see Dr. L tomorrow and then...we've allowed time for treatment, but really have no idea if that will happen. Hope to get PEX while we are here, and then a recommend for IVIG when we return home.

The flight went sooooo much better than anticipated. Hope nobody was wtching the news looking for us last night! Sorry, didn't get that chance to advertise PANDAS. The worse part was actually getting Allie past the elevators at the terminal (not ON them..oh, no, we would never try that!). Airport personel were extremely helpful, security was no problem (they let us go thru the employee part). We preboarded and had our choice of seats (SW airlines). When we were lifting off, Allie had a complete shutdown- which worked well, but was scary- I checked to make sure she was breathing! Landing was a breeze! It was such a long flight...I think she just wanted to get off the airplane. Funny, too, we put so much time and energy into that flight and how we were going to get her there, once we landed, we didn't know what to do! We had reserved a rental car and hotel, but had no idea where to go and how to get them! We managed to get it all figured out, and were safe and sound!

PenVK was our first attempt at prophylaxis. It didn't work, strep came back!

Peggy, you couldn't do it any more just because of extremely painful? Actually my son did that once ( yes, he feared it becasue of pain ) before I tried any other antibiotic, but we did not see anything in that month. Well, 1st of all, it took 5 of us to even get the 1st injection administered (and she was much smaller then!) Still, she jerked and not all the bolus actually went in. She was terrified to even go to this doctors office after that, and she loves her pediatrician. But, after all that, the strep came right back 14 days later...so, we decided it wasn't the right treatment for her. But also, my daughter was MISERABLE with PANDAS at the time, so yes, I felt terrible inflicting more pain on my child. Maybe if it had been a whizz-bang success, I would have tried it again, even if it hurt...I don't know.

We did the vaccine titer challenge about 2 1/2 years ago, but with pneumovax- my daughter had never had prevnar. Baseline for the 14 serotypes (I think it was 14) was <2.0 for all but 3 serotypes. 2 weeks post vaccine showed almost no response...So, we revaxed and 14 days later there was a full response. Both vaccines were given a few days after finishing a course of antibiotics (although I don't remember which one) because the immuno did not want to give the vaccine when my daughter was positive for strep. So each time, I had to have her tested for strep 1st (she was positive both times) and then wait until the antibiotics were finished before vaxing. Now, 2 1/2 years later, those titers have fallen again. The immuno wanted to try vaxing again, but I said no...just couldn't see this time (now that I know) how it would help us figure anything out. When we did the vax challenge, and got a titer rise from the second vaccine, the immuno reported that he'd "jump started" the immune system so it was responding now, and she should be having less trouble with strep now. The positives for strep continued though.

We did one VERY painful injection (4 years ago). She seemed to improve for about 10 days. Tested rapid positive again 14 days later. I like the idea of this, because it doesn't go through the digestive tract...but we just couldn't do it anymore.

Wanted to let all you concerned, kind people know that I do have a coat!! Actually had it all along back in a closet that we seldom open! Jen thanks for the list of stores, that is very helpful! Thanks everyone for the prayers and well wishes!

This is the 1st PANDAS doc we are seeing. Through my pediatrician we have done a steroid trial (good response), She is on zithromax, and we've been through several prophylactic abx's. Basically we are at the point where her pediatrician cannot do anymore w/o specialist help. The rheumy here would not deal with it and basically referred us to Dr. Latimer. The immunologist is waiting on word from Dr. Latimer- but said if she recommends, he will do IVIG's for us.

The pediatrician has done all that he could do w/ steroids and abx. He sent us to a rheumatologist and an immunologist. After reading the research, talking to Dr.s Cunningham and Latimer, the rheumatologist was intrigued, thought it was possible we were on to something, but did not feel "comfortable" (yeah, HIS comfort is so important!) treating for this...and gave a referral to Dr. Latimer. If there is somebody local that treats this, I don't know who and neither do Allie's doctors! The immunologist has said he will do IVIG if it is recommended by dr. Latimer. I think its really political...the rheumy is at the local children's hospital and I get the impression he doesn't think he can get it past the oversite committee.

This is pretty weird, but when my daughter gets other illness, the PANDAS symptoms improve. Maybe because she gets lethargic w/ other illnesses? A couple of years ago she got sick with something flu-like (fever, nausea), and I felt like I was on vacation or something. She'd just lay on the couch and watch tv, like a normal sick person!

I'm inspired! We're seeing Dr. Latimer on Friday (gosh, all the way from Phoenix!) and I'm so hopeful that we're finally getting our miracle! I know my daughter will still be autistic, as treating PANDAS will not suddenly give her the development that didn't happen (though would be nice if she got back some of the stuff that she regressed in). But, I think if we can remove the impediment to development, she has a much better shot in life.

Oh, but I think they are truly autistic...my daughter fits all the criteria for severe autism. Its just that those criteria only identify symptoms of something! I say my daughter is autistic, its just that the autism was caused by PANDAS, which interfered with her development. Since she had it at a very young age, it interfered with her very early development. Children who get this at an older age, have completed early childhood development, so do not present as severely, and are more easily identified because its clear that they were normally developing and then something changed drastically. But, I think you're right, many of your clients probably have PANDAS as the cause of their autism.

What is the typical length of the initial antibiotic treatment? How do we know when to stop? I just realized you are the one who gave me the dr name in W. Phx. I have an appt with him on 1/12 and am hesitating to cancel it until I see if my ped up here in Prescott Valley is taking an aggressive enough approach. Trying to evaluate that. I just worry that if we stop after 2 wks of amoxicillin, the antibodies might still be high enough they are damaging his brain. Is this a legitimate concern? Or am I suppose to just be happy the symptoms are going away? I'm so overwhelmed with all of this and don't feel like I have a clear understanding of it all yet. I would feel so much better if I trusted that my ped knew what she was doing. Maybe she does. I'm trying to figure that out by questioning all of you. :-) Thanks so much! Dakri Keep the appointment in W. Phx. This doctor at least has some experience with PANDAS, and he knows the research (I've supplied it to him and know he's read it, because we've discussed it). When he learned about my daughter (thru research and talking with Dr. Cunningham and Dr. Latimer) he very quickly realized that he has 2 other patients who have PANDAS as well, and was sooooo excited to finally have answers to what was happening and what he could do to help them (before they get as bad as my daughter.) Don't be afraid to ask him questions, no matter how crazy you may think they are...and tell him what you think is happening. He's a good listener! Okay, those antibodies that were tested for strep (ASO, AntiDnase)...they are not the ones that cause PANDAS. Many PANDAS kids have very low levels of those. The only thing they tell you, if they are elevated, is that there was a recent strep infection. My daughter's were never elevated....despite positive strep tests every 2 or 3 weeks. I don't think anybody really knows how long to stay on antibiotics- its a judgement call. I'd say stay on until you see symptom resolution, then reduce to a prophylactic level and watch carefully. If you see the beginning of symptom return...amp them back up. There really is not a standard protocol yet.