peglem

Great letter, but I need it expanded to include: When a child insists on entering your home and doing a ritual dance under your ceiling fan, they may just have OCD issues triggered by ceiling fans. Seriously, glad my daughter is too old to trick or treat. We did have a decent time trick or treating one year out of her whole childhood.

I heard somewhere (probably here) and it makes sense to me, that lower doses of abx may cause abx resistance. If the dose isn't high enough, the weakest strains of bacteria are killed off, but the stronger ones survive and proliferate because they have less competition.

Have you ruled out UTI? I don't know, grasping at straws, but wanted to try to help.

Something else occurred to me- Its a nice reach out to those who might otherwise just accept an autism dx as the final word on their child's condition. Couldn't hurt to check on the neuroimmune angle if you do have an autism dx.

Okay, I'll buy that! I found it strange that the quote was so prominent and yet, its the only place on the sight that autism is mentioned.

My daughter was in the study, too.

Well, I like it...I do think my child's autism was caused in large part by her PANDAS, and I think they'll find that a large # of autistic people have PANS. I wonder how many of the study participants had autism?

From the website:

http://www.moleculera.com/ Yea!

I wonder how much this child being sick all the time is contributing to his autistic symptoms? Yeah, wondering too, if autism symptoms may actually be a result of PANS/PANDAS.

I don't think strep carrier is well defined, but generally I think it would be someone who swabs positive but does not have symptoms. When doctors were trying to avoid treating my daughter they would bring up strep carrier and ask if she's ever had neg results. She has, and I could predict by her behavior whether she would test positive or not. It gets all confused when there are not typical symptoms, but only neuro-psychiatric ones. I mean they DO have symptoms w/ strep, but not a great immune response (immune response is what causes typical symptoms).

Yes, lamictal must be tapered up slowly and that is the normal schedule. The rage could be related to the lamictal or could be PANDAS ramping.

We've been using it for a long time. Doesn't solve everything, but when she needs something so she can actually get to an appointment...it works.

Yes, she has low IgG and low IgA. Our 1st 2 IVIGs were low dose, 4 weeks apart...and our experience was that it made Allie worse. My theory is that it was just enough IgG to create an immune response to whatever chronic infections were lurking and that immune response created more inflammation than she already had. Things got better when we switched up to the higher dose. That's our experience, but I sure would trust Dr.L's judgement as she's seen a lot of cases.

Your daughter may not seem sick because her IgG/IgA is low- so you're not seeing symptoms. When we "see" somebody being ill, what we are seeing is the immune system fighting the infection...runny nose, fever, etc. But if the immunoglobulin is low, you may not get those indications that an infection is being addressed by the immune system. So, what you may see instead is an autoimmune reaction. That's what we get. Our experience w/ IVIG is high dose every 3 weeks, so I don't know what you'd see w/ the lower dose. Also, our experience w/ Dr.L is that she is very responsive to her patient's other doctors. We only saw her once, but before seeing her, both our pediatrician and a rheumatologist had very lengthy conversations with her. And after we saw her the pediatrician consulted her a few times. Just see if the pediatrician will call her.

I don't know why the different ranges for different ages. You really can't tell much from one titer measure. A single elevated titer measure means there has been a recent past infection or some exposure, or possibly current infection. Most doctors would, I think, say that that titer is "not that elevated." What you really need to do is retest in a few weeks to see if the titers are rising or falling. Rising titer means infection, falling means convalescing.

Puberty didn't solve anything for us, either.

Mycoplasma is a common PANS trigger, although if you think the swab for strep was poorly done, you can't really trust the accuracy of a negative culture. At any rate, most abx that treat myco will also treat strep. I'm assuming, from what your GP said (myco was a past infection) that your child was IgG positive, but IgM negative. That does not necessarily mean there is no current infection. The way it is supposed to work is IgM elevates at the beginning of an infection, then recedes as the IgG elevates. That's what your doctor is basing the "past infection" on. But, in the case of chronic myco- the IgG would stay elevated when the infection is not going away and the IgM would have already gone down. You'd need to remeasure myco IgG in 4 weeks or so to see if it is going up or down. Also, often the IgM will only rise the 1st time the immune system "sees" that pathogen and future infections are met with a robust IgG response (because the immune system keeps memory Bcells) so the IgM is not needed. All that to say...the Myco infection may be current. Congrats on advocating for your child and starting to get answers. I know how good it feels to finally be taken seriously after all the frustration of being dismissed.

If your probiotic is bacterial (like lactobacillus), give at least 2 hours after abx. The idea is to repopulate the gut w/ beneficial bacteria after the abx has wiped it out and been absorbed. But there is a beneficial yeast probiotic, S. Boulardii, that you can give at the same time as the abx, since abx does not kill yeast.

I don't think there's anything wrong with doctor shopping, defined as looking for a doctor who will help my child get well. What's wrong with that? Should we all just accept whatever the local yocal says whether it makes sense or not, or whether it helps or not, or even if it makes our child worse? Yes, I doctor shop- wish I didn't have to.

Nope, not at all. Those blood tests can confirm infections, but not rule out. Can't remember the actual numbers- but a huge percentage of people do not get elevated ASO/antiDnase titers even with confirmed, cultured positive strep infections...and it seems that girls are more frequently prone to not elevating titers.

Well, if it is not exactly PANDAS (strep related), then it sure sounds like something related to some kind of infection. Sounds like an absolute classic case to me. Did you have her swabbed for strep?

Wow, the press in Italy carried the story before the local newspapers. How crazy is that?

So sorry your child (and you) are going through this. How about trying the natural stuff, like oil of oregano? Clearly, she has some sort of infection, if her glands are swollen.

Is it strep? Has she been tested for epstein-barr?