lynn

DS14 just had his first appointment with a cognitive behavioral therapist. The Dr wants him to make a list of what makes him angry, as well as starting HW with the most difficult subject (chemistry, obviously) first. The problem is that now everything makes him angry with accompanying meltdowns, and starting with his hardest subject just means that at 11pm he is still on chemistry with geometry, global history and english still to go. This, therefore, has been the week from ######. While there is a little flu going around this area and it is cold outside, there really doesn't seem to be any reason for him to be flaring right now. Could the therapy be having a paradoxical effect? Should I ditch the therapy or the therapist? Has anyone else had this problem? Wish all of these problems didn't include getting no sleep--I was just on a conference call and seem to have fallen into slumber, although I was told that no one heard any snoring ...not a good idea .

Can we go back to C3D complements? Is it believed (note use of passive voice) that these little devils actually cause inflammation? And if so, (or even if not) how are they gotten rid of? Or are they mainly only significant as a diagnostic tool and/or interference?

DS14 finished IVIG on Thursday a week ago. A little headache on Friday. Actually told me he was done with OCD on Saturday because he felt so much better. By Sunday, however, he was as bad as I have seen him and we are now actually following a descending curve with no end in sight. This is really hard. I was trying to help him with his back to school essay and the poor kid couldn't stop his OCD stuff long enough to focus on what he wanted to say. Finally I remembered ibruprofen and gave him some and then he could focus and his OCD, although still significant and disabling, was enough less that he could finish the assignment. DH, never particularly on board with the IVIG theory, has now jetisonned it altogether and is asking why DS is still on antibiotics since IVIG hasn't worked. I knew at the time that this could happen, and even explained it to DS and DH. As several here have pointed out, living through the reality is quite a different thing. I'm hoping that I will be able to post something happier in a week or two. It is hard to believe right now that I will. Current plan is to go to ibruprofen every six hours to get him through day one of school (Wednesday). And hope.

Susie, prednisone really hit us hard with yeast issues, and Augmentin was a close second. Are you doing probiotics and diflucan? The spacey blowing bubbles part sounds like DS's yeast manifestations.

I think that in DS's case the warts were caused by a virus of some sort. But they were real warts,and there are a lot of rashes that might look like little warts and be something else. (Not particularly helpful, I know.) Anyway the combo of Virastop and Oliveleaf extract did the trick and also improved the behaviors, OCD and tics for a while, until the next exacerbation... As far as why OLE interacts with antibiotics, I don't have much except that I was told by a DAN doctor not to use them together.

What a relief!! Glad to hear it!!

Before I discovered the entire PANDAS diagnosis, I used quite high levels of olive leaf extract, vitamin C, and the enzyme Virastop by Enzymedica to eliminate a plague of warts that DS had. That combination was also quite effective in eliminating tics and OCD. Several years later, as part of the current exacerbation, I tried Olive Leaf Extract again, and it was somewhat effective in making things better. Not aure why the difference, whether the other two supplements improved things more or whether he no longer responded to the OLE. Then I moverd to ABX, so I stopped the OLE (Olive Leaf Extract makes abx less effective, so don't use them together.)

I am not the expert you were hoping for, but I am interested in the questions. To follow along with w what you are asking, this is possibly the reason that many PANDAS kids who are immune deficient don't have high titers--they aren't making them?

Thank you for this post--very informative! What they told me in media training is that if you speak with passion the camera will love you--so I expect great things from your clips! Lynn

In my dd's case, an immune deficiency to strep was at play and was likely the reason that antibiotics seemed to stop working. Antibiotics alone cannot irradicate a strep infection if your immune system can't help them. I think a lot of these kids have active infections that antibiotics alone can't wipe out because of immune deficiency. Have you done a pneumococcal antibody panel and checked C3d (circulating immune complexes)levels? If elevated it indicates an autoimmune process going on.Hope that helps some. angela Angela, when you say that if C3d is elevated that an autoimmune process is going on, forgive the possible utter stupidity of this question, but what does that mean? My conceptual problem is that DS has low s. pneumonae antibodies (13 out of 14 non-existant)but yet high C3d which sounds contradictory under this explanation. Is he therefore both immune deficient and producing twisted antibodies at the same time?

Well, for almost my child's entire school life he has always had one "enemy" that he always hangs around with and who he claims he hates. I think it is very likely that this is an OCD thing, that he has to have someone to have a love hate relationship with. Very strange.

I have used Olive leaf extract in the past to great effect, however, I have heard from several sources that it cannot be used with antibiotics because it makes them ineffective.

For me, reading these things is like watching the news on TV with the sound off. You get the general idea, but the tools to actually deeply understand it aren't there I am gradually starting to populate my mind with information though, and thank you for posting!

First this is stellar news and I am really happy!!! My other question is, has she come up with a concrete plan of what she will do with the money? Being realistic, in the research world $50,000 may be chump change, but on the other hand, it could fuel the beginnings of some things that we really want, like getting the CamK test legitimized as a diagnostic tool.

Call your gas company and complain right away--a natural gas leak could also have acute effects on your life (eg kaboom)especially if it is getting worse! They have the expertise to fix it.

I am so happy for you! I hope it continues!

I called his office yesterday and they said he was at the PANDAS conference until Wednesday--maybe he'll get back then

Our child had a mystery illness too. He had a high fever, red face and tongue thrusting. They told us to bring him to the ER because they thought it was Kawasaki disease, but then they decided it was just a mystery illness. But that was in 2001 in New York. Several months later the tourettes symptoms really started.

I'm glad to hear that your DD is improving Angela! Is it amazing improvement or slow? My DS was tested for Lyme and scored all negatives on the western blot but it was not Ingenex. Wonder if I need to get it redone?

Does anyone know how the complexes decrease or what causes them to be high?

I'm so sorry that you had to make the decision as the result of chair throwing! Good luck with IVIG! We'll be thinking about you!

Amy, you and I posted at the same time (mine is at the "IVIG should I or shouldn't I" post.) My DS also has abnormally high C3 circulating complexes, and it appears that there is some concern that this may affect IVIG. In addition, it is typical of Lyme involvement.

Thanks Wendy, that is a very clear article. My DS is high in circulating C3 complexes (blood draw from 2 months ago after a month of high dose augmentin). From your earlier discussion, I think you are saying that one reason some kids skip through IVIG and some have weeks of problems might be the presence or absence of these complexes (right?) The new antibodies bond with the circulating antibody-antigen group and this slows everything down? Or is it that the IVIG itself creates additional complexes and that is the problem? Are they bad in and of themselves? Sorry for all the questions. I find this one of the more difficult concepts.

My DS, stomach ache king, finds no difference between with food and without food.

For my son, his tummy sticks out. He isn't overweight, but when the little round tummy appears, that's yeast (along with substantial worsening of symptoms like crying, aggressiveness, and anger.) Right now I give 2 candida clear and one Nature's Way Grapefruit seed extract morning and night to keep it in line.