peglem

See if the anxiety eases w/ ibuprofen and like someone else said, get a strep test.

Is there anyway to kind of use his OCD to get him there? Like mapping/planning the trip? Just trying to throw something out there that may help. We've had to use valium sometimes to get my daughter to the doctor. I don't like to use it, but no doctor=no better, so I suck it up and do what I've got to do.

Its all kinda relative... My daughter can not talk. When I hear people upset that their kids are cussing them out in a rage or calling them names...I keep thinking, I wish my daughter could cuss me out! What an upside-down world we live in.

Tiny Treasures is seeing a pediatric neurologist who treats PANDAS and is very careful about checking for other conditions that may be causing symptoms.

Yes, 23andme detects MTHFR mutations.

I think we chased strep for years and my daughter was almost always + for strep, so we thought that was what her problem was. It may have partly been that, but abx like ammoxicillan which is supposed to treat strep didn't work at all. When we went to the stronger abx (rifampin was particularly helpful) we saw improvement. We finally have found mycoP and I wonder if that was the real problem all along- it got treated sometimes w/ what we were using for strep. So did strep play a role, or was it just a red herring? IDK, but I wish we'd looked for more stuff sooner.

Do you have a lab order for those tests? Because if you get the draw done now, the results will be in by the time you see Dr. A. There is at least one pediatrician in the Phoenix area who will treat/test between Dr.A appointments and he will work closely with her on a treatment plan as well.

This may be helpful to you: http://www.latitudes.org/forums/index.php?showtopic=6265

Sounds like PANDAS/PANS to me, but, of course, nobody here can dx your child. Try to find a doctor who is familiar with treating PANS and see what they think. In the mean time you could try dosing with ibuprofen to see if that helps, and see if you can score some antibiotics. Good move getting the movements on film!

Find a new doc. He's supposed to work for you. Is this an appointment that you need to go to, or could you cancel it?

We have not done this test yet. For a thousand dollars, we have other priorities right now. BUT, would the antibodies be raised in an immune compromised kiddo? I am asking for my kiddo case, and maybe T.Annas. My kiddos strep antibodies are never raised, and are actually very low. Her IgG and IgA are below normal. She qualifies for IVIG, but we have not pursued it yet. We want to get all the other stuff under control and see what kiddo is like then. Then we will decide if we need to pursue it or not. My daughter has never had elevated strep titers, has low IgG and low IgA... I'm thinking that my daughter does make antibodies, just doesn't make them correctly. So infection or exposure does activate immune response- but the antibodies end up being against self instead of against pathogen. Just an educated guess.

The infusion center that my daughter goes to has just recently switched to Octagam as the product on hand in the pharmacy. (Its a hospital outpatient center). The nurses told me that it currently is only available in a 5% solution which means the total fluid volume to be equivalent to the same dose of the 10% solution is doubled. I had her immunologist order what she had already been getting w/ no substitutions, so she didn't have to switch brands. She gets Privigen right now, which she tolerates better than the Gammagard that she used to get.

Back in 2009 my daughter had CamKII of 242, with elevated D2 of 16,000. In your case it looks like something is affecting the CamKII activity, but not one of the four antibodies that was tested in this panel.

I always refrigerate abx. The nasty flavor doesn't come out until they warm up. The only abx I found so far that I can't refrigerate is liquid omnicef (pharmacist told me to- even though label says not to- it gets clumpy).

The only thing I can address is the high B12. I'm assuming that's serum. Frequently, high serum B12 indicates your body is not using the B12 (taking it up into cells)- so it just circulates in the blood until it is eliminated. Try Methylated B12 (methylcobalamine) and see if that makes a difference. It may help with the brain fog.

So, is the folic acid in that okay for those w/ MTHFR mutations? I gather that non-methylfolate supps are simply passed through the the system unabsorbed, but I wanted to see what others thought as well. Well, that's what I thought. But then I started reading some stuff from MTHFR sites that said you should avoid the the synthetic folic acid (the kind generally used in supplements and the kind that cereals and flour is "enriched" with). I was frustrated because it didn't make sense to me that it could cause harm. I found this though: http://www.ncbi.nlm.nih.gov/books/NBK1673/ From that: I find it very difficult to avoid folic acid completely, but try to limit it.

So, is the folic acid in that okay for those w/ MTHFR mutations?

Did pulsing work for you? No.

When my doctor did the pulsing, his rational was to give the gut a chance to recover flora in between abx.

We use Source Naturals methocobalamin (B12) sublingual. I like the sublingual form because it still gets absorbed even if the gut is messed up and the methyl form is more readily used by the cells. Then we used the P5P form of B6, either on its own or from Kirkman's SuperNuThera w/ P5P. I like that product because it has folinic acid instead of folic acid, but it does not have the methylated form of B12.

My daughter was on the 5on/7off dosing for awhile, several years ago. (5 or so) Definitely saw backslide on the offs. Switched it up to daily and did better. I don't know of any published paper, but our ped must have saw it too!

If the Myco is a concern (personally, I think it should be) then you should try azithromycin or biaxin (clarithromycin) which should sddress both strep and Myco.

Augmenten is amoxicillin w/ clavulinate (okay, not spelled right) added in to make it more effective. I'll bet your ped would be willing to rx that instead if you asked.

I thought PCR looks for DNA from bacteria? Seems like that should be acurate. Have you considered nonstrep triggers? Mycoplasma frequently triggers as does lyme and in some kids viruses as well.

Dr.A has been out of the office the past month for surgury-so Nora probably just thought you should wait until the appointment. Do you not have a pediatrician who will take care of the abx rx for you?