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Update on Friday's Doctor Appointment


Debbie1

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Hi everyone,

 

Thank you so much for all of the responses preparing me for my son's appointment. My doctor agreed to running a 72 hour throat culture and told me (as several of you did) that even if it is negative, it doesn't rule out PANDAS. He asked how I would feel about going for bloodwork to test for elevated antibodies regardless of the strep results. My response was - I want to do anything I can to either rule this out or make a correct diagnosis so I'm there!! He gave me the paperwork to take to LabCorp (we have not yet gone). He then told me he has 4 or 5 PANDAS patients and sometimes you need two or more titers levels to see is there is any change. Even if they are normal, it is not always a clear call. I was impressed that his knowledge seemed to match what I was told here.

 

We've passed the 24 hour mark and no call yet from the doctor's office so as of now, the culture is still negative. I'll keep you posted with any change. The neurologist is squeezing us in on Tuesday and by then we will have the 72 hour results. In the meantime, I just wanted to say thanks for all of the guidance and support.

 

Debbie

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Congrats on finding a helpful AND knowledgeable doctor...that is half the battle. Don't wait too long to get the blood work done....also, was he willing to try a round of antibiotics even if all turns out negative?

 

Hope all goes well and keep us posted!

Take care!

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Thank you for the update...I'm glad you doc is helpful and listening to you!

 

One more thing...when we figured out dd might be PANDAS last March we also got throat cultures on the rest of the family...to check for carriers that could act as a source of reinfection. It turns out her 5-year-old sister was postive. (We were able to clear little sister on Azithromycin. Augmentin didn't work for that.)

 

No sense of doing the antibiotics and then having your kid reinfected a couple of weeks later from a sibling right? Plus it's esp. tricky when they don't show strep signs (fever, sore throat) so your child's behavior just doesn't get better and you don't know why.

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My younger daughter was cleared on 5 days of Azithromycin. We checked that she was clear 3 weeks after the last Az. dose (and again in August since she had a sore throat after a trip).

 

Our pediatrician had originally wanted to tryClindamycin (3x day for 10 days I think). Clindamycin (liquid as she's only 5) had a completely horrible smell and taste and the poor thing cried for an hour b/c of it...needless to say, we only made it through 1 dose of Clindamycin before we switched to Azithromycin. I have heard of people using the clindamycin for 30 days to clear strep. A grown-up could take the pills. However, I wonder if a longer course of Az. would work if the 5 day course doesn't do it. I was also curious about using Augmentin and Azithromycin at the same time (or some other combination?)....

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My younger daughter was cleared on 5 days of Azithromycin. We checked that she was clear 3 weeks after the last Az. dose (and again in August since she had a sore throat after a trip).

 

Our pediatrician had originally wanted to tryClindamycin (3x day for 10 days I think). Clindamycin (liquid as she's only 5) had a completely horrible smell and taste and the poor thing cried for an hour b/c of it...needless to say, we only made it through 1 dose of Clindamycin before we switched to Azithromycin. I have heard of people using the clindamycin for 30 days to clear strep. A grown-up could take the pills. However, I wonder if a longer course of Az. would work if the 5 day course doesn't do it. I was also curious about using Augmentin and Azithromycin at the same time (or some other combination?)....

 

My son has Pandas. About a year ago we went to an infectious disease doc and she put my son (8yrs old) on clindamycin for 10 days. (3 times a day) When finished he was symptom free! It has been over a year now and he is still free of ticking, ocd, anxiety attacks, everything. It seemed to do the trick, thank god. At least until he gets another case of strep.

Dominique

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