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My kids have been on zithromax since October 2008. When they began their weights were 40 # to 110 lb. The lowest dose was 250 mg per day. My son who was 40# now is 50 #. I increase him to 375 with flareups . My oldest child takes 500 with flareups.

Treatment dose should be no less than 12 mg/kg/day.

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I used the sample letter found on the pandas network and made it tailored to my DS. I sent one copy to his teacher, one to the principal and one to the resource room teacher. He was diagnosed Aspergers just before PANDAS and I was trying to get some services for him. What a joke! He's working ahead of grade level and didn't have many issues as school, so they really balked at giving him any services. He was placed in a social skills class, once a week for about 20min w/ the social worker. After we got the PANDAS diagnosis and treatment, his Aspergers behaviors went away. I had already had meetings w/ the teacher, principal and resource room teacher (who he does not know, never seen, she just handles the "case"). I sent the letter just a few weeks ago to help them understand more about PANDAS. I have not heard one word back from the school.

 

My DS was originally put on biaxin 250mg twice a day. He took it for 60 days. Then he went to a prophylactic dose of zithromax 250mg twice a week. He was on that for a month but it was not enough and he started slipping back into PANDAS behaviors. He was put on Augmentin 500mg twice a day. He's been on Augmentin for 20 days and has 20 to go. Don't know what he'll be given then but he has returned to 90-95% of his function before PANDAS. He's doing really well. I hope that gives you some hope.

 

We've done no diet changes. He takes probiotics 2x a day to protect his gut from the antibiotics. It was recommended by his PANDAS dr. He's on vitamin supplements because he has low ferritin levels.

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Thanks everyone, for your *amazing* feedback. Here's where we are now (Wednesday afternoon):

 

Despite 1/2 an inch (or more) of ice and power outages, we have finally gotten a Rx for Zith (10 days to start, but another 10 days supply is on hand)!!!

 

Our Ped is totally helpful and talked to me at length on the phone this morning about what she can offer (including referrals to psychiatrists to help with the OCD).

 

I am still overwhelmed with big the picture, but for now I will watch, wait, record, rate behaviors, and breathe.

 

I guess if the abx work, then I need to figure out how long to stay on them? Our Ped can't help with that info, so maybe I go to one of the recommended docs nearby for more support with abx?

 

I also ordered some strep-free probiotics today, will get them by Friday.

 

So, for now, Zith 1ce/cay, Ibuprophen 2ce/day, probiotics 2ce/day (away from Zith) and stay on GFCFSFCFYF diet to keep inflammation low in her body.

 

Thanks again, everyone!!!

 

Malke

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Unfortunately, a psychiatrist will probably just tell you to try therapy and offer you Zoloft or similar then charge you an arm and a leg. If you wish to get a referral to help with the OCD, get one to a psychologist or therapist. Even then, some kids will not really benefit from therapy until they are a bit more into recovery. That varies with each child.

 

Otherwise, I'm glad you got a prescription for the Zithromax! Keep us updated!

 

 

Our Ped is totally helpful and talked to me at length on the phone this morning about what she can offer (including referrals to psychiatrists to help with the OCD).

 

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EAMom---Azith---100 mg/day. When we first filled it almost 2 months ago, my "gut" told me it was a very low dose. But since we are seeing a "pandas specialist" I swallowed that concern (well, choked it down). How long did your dd take the 250 mg?? WE don't have confirmed recent strep at all.......maybe started w/it years ago, but biggest hit was viral, then staph impetigo over summer.

 

S&S---we are on 100 mg/day for 45 pound dd7---no help. Now I'm thinking dose is toooo low!

 

Are you talking about Azith (or advil)? My dd took 250mg/day Azith. when she was 45 pounds.

When my daughter was first treated for PANDAS, she was also put on 100mg of azith along with a month of prednisone. I was also skeptical, but in our case, there was good evidence that the strep was cleared, and we were only dealing with the autoimmune component at that time. From what you have written about taking a biggest hit from a virus, then perhaps the prophylaxis dose is more appropriate? You would need to ask your doctor specifically why they chose this dose.

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Some psychiatrists will rx abs. For others, it is ouside of their comfort zone (or perhaps they don't want to step on the peds toes?). My dd's psychiatrist will rx antibiotics for my PANDAS dd. I also have a friend (in another state) who is a child psychiatrist, and she has rx'd antibiotics for her PANDAS patients. I think it depends on the doc. But, Vickie is right, many (most?) won't.

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