peglem

Here's a link to the dx/treatment flow chart: http://www.latitudes.org/forums/index.php?showtopic=6688 Also, you might want to check out the very 1st pinned thread at the top of the forum that has a lot of info and links to scientific literature, which you might use to get help from a doctor who is willing to learn. I agree that most people do not see significant improvement with pennicilan. Zithromax is what works best for us.

Look up doctors ou want to see on myuhc.com. You are covered for any doctor in any state who is in-network. We live in AZ, have UHC and were able to get preapproved to see Dr. Latimer in Maryland w/ just a $35 copay Even though she is out of network (she took no insurance at that time) we were able to get it approved because we were referred by a local rheumatologist who was "not comfortable" diagnosing or treating my daughter. The travel was the most expensive part and we are still paying for that. Hopefully, somebody will help you find somebody a bit closer.

Last year, before our Cunningham test, the pediatrician had my daughter on a 5on/5off regimen...strep came back on the off days. I think you'd be better off starting with the loading dose, then going every other day...maintain tissue levels. I know my pediatrician wanted to give time for the zith to get completely out of her system to make sure her liver stays healthy. He has since checked with a specialist who says that 500mg/day is a safe dose- but we do check liver function every 6 months anyway. We did a 3 day loading dose- then every other day-500mg for my 115 lb. child.

Well, my theory is that PANDAS kids have something wrong with their immune system! To quote my daughter's pediatrician, "her immune system is crap!" So you sent your only copy of your medical records to Chicago? Can you get another copy or have Dr. K's office fax them to you?

Zithro at full treatment dose worked for us.

I agree, especially in light of the fact that they have been feeding livestock abx as a regular part of their diet for years...

I'm really just thrilled for you! Wow, what terrific news!!!

Answering my own post, to call myself a nimrod! Allie has had a bit of nasal congestion so I've been using the Nasonex prescribed by her pediatrician a few months back. I just looked up the SEs- yep, nosebleed and I hadn't realized it was a steroid spray, which will make her more susceptible to viral infections. Dang, I'm usually so good about looking up every med before I give it- but this time, I thought since its not systemic, it'd be no biggie. But, the really nimrod part is that I had forgotten that she had a bad reaction to this @ 4 years ago. (in my defense, she's been on so many things since then that its difficult keeping track!) She ended up with double shiners from kneeing herself in the eyes last time, and, since I was assured by the urgent care physician and the pharmacist that it couldn't be related to the Nasonex, I kept using it (I'm certain she had strep at the time as well!) and she ended up in the emergency room with a hematoma- her entire head was "squishy" from banging. Okay, so only saline in the nose from now on, and xylitol.

Funny you should bring this up- Allie does not have a history of nose bleeds, but she started school on Wednesday and has had a nosebleed everyday since. I have no idea what's up w/ that. Her last IVIG was 10 days ago, but she has not had nosebleeds w/ any of the previous ones.

I'm confused...I thought this WAS the Cunningham study? PANDAS McNuggets w/fry/coke The Cunningham test, in addition to measuring CamKII activity levels, also tests for 4 antineuronal antibodies.

I had my 1st doc appt. in 8 years this summer. I was kinda putting it off because I had to find a new PCP since we switched insurance 8 years ago. Had my mammo (its actually not as barbaric as it was 8 years ago). Hub has diabetes so he goes pretty frequently- but he has to manage his appt.s himself- my daughter's are about all I can manage.

Just nagging at the corner of my brain- there may be an entirely biological basis for gender based symptoms, but I can't help but think there is a social component as well. I think the "flavor" of my daughters OCD is largely based on experiences or instructions she's had that are exaggerated or overgeneralized into pathological proportions. I think the fact that socially we stress different things for boys and girls may contibute to differences in OCD expression.

You won't know until you try! Unless he is allergic, it will probably be safe (of course I am not a physician). If it helps, its an indication that he has an underlying bacterial infection contibuting to his symptoms. But, if it doesn't help, it doesn't necessarily mean that he doesn't have one. And sometimes, once PANDAS gets started, the symptoms can be triggered by viral infections and even allergies. I'd also try ibuprofen- try to get inflammation down.

subQ ?????

PANDAS is a clinical dx. There is no lab test that conclusively proves PANDAS. Dr. Cunningham DOES send you test results and will answer questions about what they mean. But, since her test is still in the study stage, it can not be considered definitive proof. My daughter has immune deficiencies and has never tested with positive ASO or antiDnase, but has had positive strep tests (rapid) with behavioral exacerbations. I am not familiar with the Immunosciences testing. What how did they test for PANDAS?

Do you think Dr. K believes that most Aspergers or Autism is really PANDAs? I did hear him on Autism One Radio saying that the brain does not get sick, but that the body gets sick and affects the brain. Sorry to hijack the thread, but he never would commit one way or the other when I tried to pin him down. I think that much of my DS Asperger's is really PANDAs. I think he believes that PANDAS is one possible cause of ASD, but not the only cause. I think he believes, like me, that what is called autism is only a collection of symptoms and you should search for the underlying medical problem- often immune related, but not always.

Have you been to Dr. K's website, webpediactrics.com? He discusses autism and PANDAS, and I think you'll find you are right about it really being OCD/PANDAS all along.

Welcome! Many people have seen Dr. Kovacevic and he is one of docs who is well versed in PANDAS treatment. He is not a DAN doctor though, and is unlikely to treat with all natural supplements. He gets good results though, for PANDAS. I don't know anything about monolauren, but if your son has PANDAS, I think you should hit it hard and use the abx.

Wow, I hate these situations. They absolutely are not allowed to place any child in a self contained sped class based on the "other kids". SPED is only based on the needs of the individual student and if they are doing this to kids, they clearly are out of compliance w/ federal law. They can't force this on you. But...they have numerous little subtle ways to make your child's life difficult (and yours) and even if investigated, they will dummy up the paperwork to make it look like you are they one with the problem. Shame on them- not only for their own intolerant ignorance, but for visiting this on all the students in the school. If the other students are truly uncomfortable with this, steps should be taken to help them learn, understand and accept. How in the world will the other students learn good social behavior with school staff modeling bullying behavior!

My guess would be the IVIG was ordered for immune deficiency (low IgG). My daughter's 1st 2 infusions were @ that dose and when I researched it, it seems that is standard for immune deficiency- the goal being to just normalize IgG levels. But, I agree w/ EAmom- I wouldn't bother if its not making any difference.

I've been where you are now. Did the pediatrician rx the seizure med, or a neuro? Right now- I think its urgent that you get in contact with the prescribing physician and get that straightened out. And I don't think you're over reacting at all. This is a disorder that hits hard and fast- if your doctor is bothered by you needing help, he/she is not taking it seriously enough. The doctor gets paid to help you when you need it.

Fixit, on the LDN- are you doing the cream/lotion (whatever it is that you do on the skin) or oral administration? We did a couple of months of LDN last summer, but stopped when the strep came back (we were on a lower dose of abx back then). We were actually prescribed through the psychiatrist, but she had not used it before and is not familiar w/ using the low dose. I think I saw some good things, but w/ all the other things we were trying- I wanted to avoid other variables. Nobody seems to know how it would affect the immune system of someone who is getting monthly IVIG...

We did a 10 day course of rifampin/augmentin, then returned to a higher dose prophylactic (zith). It makes sense to me to hange the prophylaxis as well, because if it was doing what its supposed to you wouldn't have gotten strep.

I think I leaned a lesson. they come in 250 mg, so I will give them 2 x per week - spread a part. I wish I did not listen to him. ugh....... So, your tablets have red dye? I've never seen that w/ zith tablets.

The pediatric part of the acronym refers to pediatric onset not to duration. But that has been a constant point of confusion. That doesn't rule out adult onset of infection triggered autoimmune neuropsychiatric disorders- just that this has been studied as as a pediatric issue and hasn't been studied in adults.