peglem

The 2 favorites (for strep) seem to be either full strength zithromax or augmentin (the XR version of that seems to be what has worked best), unless mycoP is suspected- then Biaxin. On the other hand, some people find that keflex or omnicef work best for there child, so there is really a lot of variation from child to child.

I really don't know, but logically, it seems to me that the titers should not be too high unless your child was recently vaccinated or recently exposed. There are "protective levels (able to mount a robust response in case of exposure) and there are infection levels (immune system is mounting a response). I know I've heard of a lot of autistic children who have high measles titers. My daughter's were never checked.

I haven't seen the game, but I'd really like a crack at smashing as many pandas heads as I can! Oh, and the lab where my daughter gets her blood draws, the "I had a blood test" stickers have a panda on them- what's up with that?

Maybe she was afraid it was AIDS because you wouldn't tell her!

I would tell a neurologist- PANDAS has neurological implications and I would think its info they would need to accurately assess whats going on.

I think I hit the jackpot with this bartender - she's going to school for behavior therapy and her boyfriend is a pediatrician. I wrote down all of the key websites she needs to share with him. Spreading the word anyway we can!! Cheers!! So do you think God broke your car so you'd need repair during this bartenders shift? Just seems too coincidental!

I just say she has an autoimmune disorder that is triggered by strep (or infection).

If you could see me now- you'd see a happy dance in your honor! Mine is 15 and still sleeps w/ grandma or on the couch! Such amazing news, and SHE was the one who initiated it!

Totally cool! Hope to see more improvements on the way!

That is so cool. Sometimes you just never know until you try! (I mean both getting docs to listen and abx)

Bumping this up and letting people know that we desperately need help! There are only 8 days left to vote and one of our big allies just dropped out of the race, resulting in our rank dropping over the last 2 days. We just need to maintain a top 10 ranking for a week and we will get the grant...PLEASE HELP, by voting and getting others you know to vote as well!

Now 8th....

Let me just say that from the first time you posted, I thought you were one amazing 15yo! Sorry you don't have more support from your mom, but if anyone can get through this on mostly their own, you can! Hang in there kiddo!

Wow, that's hard coming from someone you love, and trusted. And I'll bet you never suspected she was so childish! Sorry!

Our dd just received IVIG from Dr. K. last week. Her dose was 1.5 g/kg. 2 g/kg means that your child will get 2 grams of IVIG for every kg that your child weighs. For example, if your child weighs 100 lbs, that equals 100/2.2 kg or 45 kg. Your child would get 45 X 2 or 90 grams of IVIG. As I said, the dose of IVIG that our dd received was 1.5 g/kg, half one day and half the second day. I believe this is Dr. K's regular dose and 2 g/kg is a high dose. One thing to note. Make sure your child is well hydrated before, during and after. Dr. K. pushes several hundred ml of IV fluids before and after the IVIG. This, and making sure your child drinks a lot of fluids prior to and after each day of IVIG will reduce the severity of headaches. Thanks for the great information. How do I find out whether or not my insurance group approves it. I found an infusion center that takes Cigna for auto immune disorder, I wonder if this means we are covered. Well, call them and ask! I did call and they said yes, but it seems way to easy and too good to be true. Just asking a question Im not ignorant. Im so used to arguing and justifying why I need treatment for my son.Nothing has come so easy. Oh, sorry, not trying to offend! I thought you'd found it on Cigna's website and hadn't called yet. Sounds like you're on your way...and I hope it is that easy!!! I know what you mean about not trusting that something could be easy- I spent 2 days studying and preparing to ask the immuno to increase IVIG dosage for my daughter. I was flabbergasted when he just said that the literature indicated that a higher dose was needed and then ordered it, without me even needing to explain anything!

Our dd just received IVIG from Dr. K. last week. Her dose was 1.5 g/kg. 2 g/kg means that your child will get 2 grams of IVIG for every kg that your child weighs. For example, if your child weighs 100 lbs, that equals 100/2.2 kg or 45 kg. Your child would get 45 X 2 or 90 grams of IVIG. As I said, the dose of IVIG that our dd received was 1.5 g/kg, half one day and half the second day. I believe this is Dr. K's regular dose and 2 g/kg is a high dose. One thing to note. Make sure your child is well hydrated before, during and after. Dr. K. pushes several hundred ml of IV fluids before and after the IVIG. This, and making sure your child drinks a lot of fluids prior to and after each day of IVIG will reduce the severity of headaches. Thanks for the great information. How do I find out whether or not my insurance group approves it. I found an infusion center that takes Cigna for auto immune disorder, I wonder if this means we are covered. Well, call them and ask!

Buster did a compare a while back of results- a very nice, organized chart! One of the things that was noticed (from our small sampling)was that kids on SSRIs seemed to have higher D2, although my daughter was not on an SSRI, she was on Lamictal, which I think does have some effect on serotonin. Its not clear if the meds are responsible for elevation of D2 or if kids w/ high D2 are more likely to be prescribed those meds. But, I'm wondering if your child has had eating issues? And I didn't think my daughter was in exacerbation at the time of her Cunningham blood draw- but have w/ more aggressive treatment (she was on a pretty wanky prophylactic zith regimen at the time) found that she can be way better than she was at the time-and we had a + strep test not too long after that.

Her antiD2 was 16,000- wow never heard of anyone w/ a 32,000! When we went to see Dr.L w/ a very high CamK (242), that number intrigued her, but she felt that she couldn't make treatment decisions based on that, however, she felt that the very elevated antiD2 was something that she could "hang her hat on" because it was very clear, study or not, that high antineuronal antibodies just should not be there and, so she could justify treatment based on that finding- so, I kind of see why the doc might be more interested in seeing those- as an indicator of autoimmunity.

You sound like you are not comfortable with this. I'd reschedule for later, to give you some time to find out more info, and maybe resolve the allergy situation better. Is your son in exacerbation? I definitely would not do T&A during exacerbation....well, I wouldn't if I had it to do all over again! Despite being on omnicef for a month prior and amoxicillan for 14 days after T&A, my daughter got much, much worse after. We were doing it for prophylaxis as well, and my daughter continued to test positive for strep whenever she wasn't on abx. She does seem to have less sinus problems, though. Some people have had really good results from T&A, so I just think you need to proceed cautiously and get as much info as you can before deciding.

Currently the FAQ states that IVIG is anti-inflammatory. I think it needs to be clear that it is pro-inflammatory at lower doses and anti-inflammatory at higher doses.

There was somebody from this board who saw Dr. N- I don't think it was very satisfactory. Tried to find the post for you, but couldn't. It may be one of those that was deleted because it discussed an individual doctor- maybe that poster will see this and PM you.

When we went to see Dr.L w/ a very high CamK (242), that number intrigued her, but she felt that she couldn't make treatment decisions based on that, however, she felt that the very elevated antiD2 was something that she could "hang her hat on" because it was very clear, study or not, that high antineuronal antibodies just should not be there and, so she could justify treatment based on that finding- so, I kind of see why the doc might be more interested in seeing those- as an indicator of autoimmunity.

Aaaaaaahhhhhhh! No, there IS NO LAB TEST THAT CONFIRMS PANDAS!!!! Dr. N ran ASO and AntiDnase titers, which were elevated in Sammy's case- but those certainly do not confirm PANDAS! Many children have those titers high w/o having PANDAS, and many children have PANDAS w/o high ASO and antiDnase titers. This was discussed here a lot when the SS book came out, because people were being told (by somebody who does not routinely post here) that they should get titers tested if they suspected PANDAS, and that you needed to have high titers for it to be PANDAS. It IS very confusing!!!

That's high dose- for autoimmunity. Did your doctor tell you where to take the script? I guess I'd call an infusion center, or ask at a hospital that provides the service and takes your insurance.... The doctor who ordered it for us (an immunologist) has a nurse that takes care of infusions- some they do in office, but my daughter gets them at an outpatient unit of a local children's hospital.

If he's read the study and still doesn't know what it means, you need a new doctor! He's fine (probably) for treating aches and pains and normal childhood illness, but not interested in learning or investigating anything new. Shame on him!