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Sent our Cam test in this morning...


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It went better than I expected- we got our regular tech at labcorp., who did the whole thing, including the packing/fed ex part.

I'm not sure how I feel- if it's no, I literally feel like cannot keep trying to figure this child's issues out (I know so many of you have spent so many more years suffering than we have)

I think it's going to be yes, based on our day 4 of Azith. and the results we are seeing- higher level of maturity, we've had no rages in the past 4 days, and better control of her body.

Thanks to everyone here, I have spent countless hours reading back posts and learning--

Sarah &

Samantha age 5

Edited by S & S
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Hi Sarah,

 

I don't know if you saw my response to you in another post... but I know your mommy gut was telling you zith! How long are you going to give it? Are you getting it through a compounding pharmacy?

 

 

Hi Mom Love :-)

Yes, I get all of her scripts from a nearby compounding pharmacy, since we are GFCFSF and dye free for a few years now...nope, not cheap!

Our Dr. sent in a script w/2 refills- he gave me a dose of 200 mg a day, but, ooops, I've been giving 250 mg a day -- since this is our first time out, I'm thinking--dd5 weighs 40 pounds.

So, I am going to keep her on it (get the refills without a break in dose) Sounds like it should all last me 25-30 days...soon as the Cam test comes back (first part yes or no) I am going to call our Dr. for our phone appt. to go over, let him know how we have been doing on Azith.

I guess I'll see what he thinks about continuing on the Azith. past this script/refill and for how long...if we are positive, of course...

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You just need to email Dr. Cunningham with a request. They will send you a kit with the tubes for blood, instructions and some release forms, etc. You go to a local phlebotomy lab to have the blood drawn and then fed ex it back in the package they provide. Best to do the blood draw and send it early in the week so it doesn't sit over the weekend.

 

Here is a link explaining the study a little more. At the botttom you will see her email address.

 

http://www.pandasresourcenetwork.org/research-programs.html

 

 

 

Hello,

 

Can you please let me know the process to do Cunningham's test? Who to contact, who needs to authorize (we can get our Ped to authorize if needed) etc..

 

Would very much appreciate if you can provide this info as a reply to this thread of as a PM (if you prefer).

 

TIA,

MB

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