peglem

Yes, Allie's immuno said they (at his office) prefer to do it every 3 weeks because it keeps the IgG levels more stable. I'm getting a bit anxious waiting for insurance approval- seems like we've been getting a lot of "guff" from the insurance companies since the beginning of the year (new policies or something), and, though the immuno seemed VERY confident that there would not be a problem...I can't help but think there will be.

Okay, I did the lbs to kg conversion and that's @ 1gm/kg every 4 weeks. I think that's about what Allie will get every 3 weeks, and w/ the discussion on here about "proper" IVIG dosage, I was worried it wouldn't be enough and I'm afraid we wouldn't be able to get the higher dose, so really, really happy to hear the lower dose is is effective for you! I like your immuno's attitude!

Glad to hear everything is going so well! Couple of questions: What dose IVIG does she get monthly and is monthly IVIG expected to be a lifelong ordeal?

Haven't used minocycline, but here's a thread where I asked about it: http://www.latitudes.org/forums/index.php?...;hl=minocycline Sounds like it has some potential side effects that you should watch out for. Pharangitis? Isn't that just a throat infection? Was Danny on abx already? Glad you found a helpful immuno!

No, I don't think they are. The recommendation of those particular abx's is comes from experiences discussed by people on this board. Here are some threads that you may find particularly useful if you are new to PANDAS: http://www.latitudes.org/forums/index.php?showtopic=6265 http://www.latitudes.org/forums/index.php?showtopic=6266 http://www.latitudes.org/forums/index.php?showtopic=6688 And, of course keep asking any questions you have!

I don't think there is a straight forward answer to that question. My PANDAS daughter is 15 and severely autistic. We didn't recognize her problems with strep until she was 10 years old. Once the pattern of behaviors associated with strep episodes became obvious, I was able to look back to episodes from very early in her life when we never knew she had strep, and I could see that they were the same behaviors. So my personal opinion is that PANDAS, if it starts at a very young age, can interrupt and pervert normal development. So, I think its possible that these other "diagnosis", which are really just observed symptoms, can be caused by PANDAS. But, i don't think anybody can say for sure.

I think you can split it as long as you take it at the same time, but not if you take half now, half later.

One of the things you might try (or see if you can get your pediatrician to try) is a month of full strength abx...most PANDAS parents find that either augmentem or zithromax work best for PANDAS. If you see obvious improvement w/ abx, then that is a good indication that your son's behaviors are the result of an infectious agent. Also, to check for autoimmunity, a steroid burst is often tried, which suppresses the immune system (including auto-antibodies). I hope you will not just be passed from doctor to doctor, like so many of us here have been. That tends to happen when they don't know what to do....

Jewels, do you have the link for this? Interesting that they mention the persistent colonization.

They need to see that its cheaper to do IVIG than to provide a lifetime of ineffective psych meds.

Is there a reason he is not on abx?

Boy, I'd sure be staying away from that stuff!

My daughter does VERY well with valerian root, which increases GABA. It helps her relax enough to fall asleep. Warning: it STINKS!

When I did it last summer, i received the kit w/in a week.

Me too.

I know exactly how you feel! SCORE! You found a doctor who doesn't think you're crazy and is trying to help. How amazing is that? (and it shouldn't be ) I agree, God does work in mysterious ways- if you let him.

When you call Labcorp tomorrow, make it clear that you are not requesting that they run a test...you just need a draw and spin- the test will be run by the lab in Oklahoma. It sounds like they think you are requesting a test that they can't run.

This was the case for me. My pediatrician's office doesn't do blood draws, but we have a good relationship with the phlebotomist who usually draws my daughter's blood. She agreed to draw the extra vials and spin them out for me when we were in for a regular, doctor ordered draw.

Sorry, I bumped before I read my email!

Ack! I just bumped the thread to remind people that it was tomorrow. Guess I should have checked my email 1st!

Excerpt from Buster's brief history of PANDAS (in the pinned "helpful threads") Kurlan seems to be actively trying to disprove PANDAS.

Just wanted to remind people that this is coming up tomorrow!

We just saw Dr.L in January. Initial appointment is $580. She does not take anybody's insurance, but from what I hear, she does get treatment at Georgetown covered. We returned home for IVIG treatment, so don't personally have experience with treatment at Georgetown. I agree w/ reactive about getting all the labs and stuff before you see a PANDAS expert.

What is this parent letter of which you speak? I can see where Dr. Cunningham can't make any claims or recommendations yet about the testing- its still a study only.

Just a thought, though I may be way off base- how about kinda using the OCD to get him to eat- honey is antibacterial, so toast w/ honey?