peglem

For my child (problems started in infancy) the movements and OCD are constant features, but we have episodes of severe intensity vs milder, more manageable periods. Her strep appears to be chronic (carrier state) so the milder periods tend to happen when she is on abx. PenVK did not work for us and she tested positive for strep while on it (with severe symptom emergence). As far as how to know its not PANDAS, I would say when you've found another for sure cause. I firmly believe that the tics and OCD are symptoms of some underlying disease process and if PANDAS is not the cause-SOMETHING is.

It looks like the child is possessed by demons. I think if this happens to your child you know exactly what it means. It is an extreme fight or flight reaction from out of nowhere. Child becomes extremely aggressive, violent, and detached from reality for minutes or hours at a time.

Melanie, Just want to let you know how excited I am that this is finally happening for you guys!

When I would call to make same day appointments for strep test- I would report a "plegmy" smell as a symptom to the triage nurse on the phone...it always seemed to be dismissed as not significant, so I stopped.

For the purposes of an IEP he could be classified as OHI (Other Health Impaired). That classification is just a qualifier for services. The actual services he receives should be based soley on what his individual needs are.

Well, there is another, regulatory component to the immune system that is supposed to monitor for and "take out" the bad antibodies. Perhaps that's the thing PEX & IVIG fixes? We talked to the immunologist on Tuesday about IVIG...mostly it seems they don't know why it works- or at least he doesn't. I get the feeling though that he's not terribly up to date on research. What I don't understand, is why our immune system doesn't make antibodies to the donor IgG, since it is nonself.

Wow, what an amazing, scary journey you've had so far. Welcome to the club, sorry you qualify for membership!

Tmom, I don't know why this struck me as hilarious...I actually laughed till there were tears rolling....It seems like we've been tossed into some strange parallel universe. When people from the "real" world ask about it...I find myself hesitating, trying to find a way to answer w/o sounding like a complete nutjob. I never quite pull it off! Guess that's what makes this forum so special!

How does your brother in law know it was abx that caused the liver damage he's seen?

Well, they're missing something, somewhere...its extraordinary for your child to be going through all these infections and surgeries. Those labs last May were a snapshot of a little bitty part of his blood...I'd want them checked again, AND I'd want a copy of the actual lab results (from last May, too) so I could look at the #'s and seek out info. VERY frequently doctor's dismiss abnormal lab results because they don't think its "significant" and they'll tell you it came out normal. All these interventions and doctor's visits and they still don't know why your son is having problems? I think that's crazy!

Those are the ones I was talking about. It looks like the doctors are on top of it. Did you get test results yet? What do the doctors say about the results?

Yes, look here: http://en.wikipedia.org/wiki/Amoxicillin under Side effects- it has pictures, too.

Isn't there something about using augmentin when there is epstein barr virus present, that causes a rash? Let me check on that and get back...

Yep, he has had immunological blood work done by Infectious Disease and Immunology. Everything shows negative except H. Pylori and Epstein Barr (and from what I understand- both are common and would not be cause). Is there a particular test you recommend he get done? I will post what types of test he has had done, just give me a minute.... Thank you Oh, i was thinking about testing IgG levels + IgG subclasses, IgA, IgM...that sort of thing, not so much titers to specific pathogens.

I'm not sure what it means. But there is some info on MPn tests on the bottom of this page: http://s99.middlebury.edu/BI330A/projects/...pneumoniae.html

oh, this is better: http://s99.middlebury.edu/BI330A/projects/...pneumoniae.html

I think I read somewhere that finding what kills bacteria in a petri dish is not the same as how it works in the body... But, the question that comes to my mind is why isn't his immune system able to fight off these infections? Had immune testing done?

Here: http://en.wikipedia.org/wiki/Mycoplasma_pneumoniae The trouble with googling is that mycoplasma w/o the pneumonia is something different, and the disease and the organism have different spellings.

Ouch! on the price! But maybe I'll get a copy for my daughter's pediatrician...he loves that sort of thing!

What she does know is that she get fears that interfere w/ her being able to do what she wants to do. She understands that. When we decided that we'd have to go see Dr. Latimer (who, incidently had a very difficult time evaluating Allie, although she had some immediate insights that other professionals have not been able to see), I explained that her pediatrician (she adores him!) and the rheumatologist think that the stuff that her body is making to try to get rid of the strep is going to her brain and giving her scary thoughts. The whole time I was talking, she was signing "yes" to where I thought she might sprain her wrist! Then I told her that those doctors are not sure how to help her, but think that Dr. Latimer will know what to do about it because Dr. L is really smart about this problem and has helped some other kids who have the same problem. Again, I got the yes, yes, yes, sign from her and I could tell from how well she paid attention to me and the sense of relief she had, that she really got it. Doesn't mean it wasn't hard getting her there...but she knew why and wanted the help and worked hard, even though she was terrified. I do expect that it will get easier to work on after the IVIG. She is in a pretty good place right now. Something she has done on the computer- she goes to this certain website that has coloring pages- gets to this one page and just sits there, getting upset, staring at this page and smacking herself on the head and kneeing herself in the face. A few months ago, all I could do is get off that site (while she rained blows upon me) and get her through the resulting melt down. Now, I just say- you need to find something that makes you happy- don't go to that page if it upsets you! She's been rediscovering some things that she used to enjoy and enjoying them once again. And there's just so many things changing here so quickly...I can hardly keep up with it....but life is so much better!

The immunologist seems to feel we have more than enough "evidence" for insurance to approve. On cognitive level- we just really don't know- she seems to understand most everything. It really can't be tested. Her last IQ test put her @ equivalent to a stone, and I know that's way off! The problem is getting feedback from her. I can explain OCD to her and she will understand. I see no problem with working on compulsions- I can see what's going on there and I'll probably work on that 1st-objects that cause anxiety. But, I can't see her obsessive thoughts and she has no way to tell me about those...I can ask her yes/no questions, or give her "finger choices." But trying to guess what and when its happening to give her those choices or questions... I do need to study up on this more. I do want to get the "What to do When Your Brain Gets Stuck" book- That's sounds like something I could adapt for her. She currently does have a super teacher who will try anything to help her- I just need to figure out what we want to do.

She's really doing pretty good right now, better than all of 2009! I think the getting aggressive with abx at the end of the year and upping the prophylaxis has helped a lot. She's stabilizing into a PANDAS lite. (I know that's all relative). We've just seen a couple of bouts of aggression a day, and those are short lived and brought under control pretty easily. She's just so much happier and less anxious. I'm wondering if I can find a way to adapt ERP for a child who cannot supply much feedback. She seems to understand, just unable to communicate back very well, and I don't even know where to find a therapist who could work with that.

We saw the immunologist today- the one who said he'd do IVIG if Dr. Latimer recommended- and gave him her report. So, we're going ahead with it. He said it'll take about a month to get it through insurance and get it set up, then we're good to go! Also, he's recommending doing an infusion every 3 weeks- as he wants to keep the antibodies at a stable level.

Wow! What a great feeling to just hear this news about somebody else!

The psychologist is a very good idea. Sounds like the new school is casting about for ideas to help them handle this, and a good psychologist should be able to give them some ideas and tools.