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1st step toward diagnosis...


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I took my daughter (7) to ped. today for tests... I thought it might be a good idea as her brother (9) has PANDAS and after reading the posts and threads some of here behaviors lead me to think she fit the criteria....

 

she tested positive for both throat and vaginal strep with the rapid test! We go for blood labs this afternoon. I already sent a note to dr K as he has provided guidance and advice for our son.

 

in hindsight I am not sure why I never suspected PANDAS... the signs were there just not as dramatic as with my son! I think I thought the odds of having more than 1 child were small... or I just didnt want to see it as I new what it would mean for her and us ;)

 

I am taking everyone else for cultures on Wednesday...

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I took my daughter (7) to ped. today for tests... I thought it might be a good idea as her brother (9) has PANDAS and after reading the posts and threads some of here behaviors lead me to think she fit the criteria....

 

she tested positive for both throat and vaginal strep with the rapid test! We go for blood labs this afternoon. I already sent a note to dr K as he has provided guidance and advice for our son.

 

in hindsight I am not sure why I never suspected PANDAS... the signs were there just not as dramatic as with my son! I think I thought the odds of having more than 1 child were small... or I just didnt want to see it as I new what it would mean for her and us :lol:

 

I am taking everyone else for cultures on Wednesday...

 

Since you have the positive strep cultures, you really shouldn't be getting any blood work for strep exotoxin antigens. You might be getting blood work for other stuff, but you already have the positive on strep.

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I took my daughter (7) to ped. today for tests... I thought it might be a good idea as her brother (9) has PANDAS and after reading the posts and threads some of here behaviors lead me to think she fit the criteria....

 

she tested positive for both throat and vaginal strep with the rapid test! We go for blood labs this afternoon. I already sent a note to dr K as he has provided guidance and advice for our son.

 

in hindsight I am not sure why I never suspected PANDAS... the signs were there just not as dramatic as with my son! I think I thought the odds of having more than 1 child were small... or I just didnt want to see it as I new what it would mean for her and us :lol:

 

I am taking everyone else for cultures on Wednesday...

 

Since you have the positive strep cultures, you really shouldn't be getting any blood work for strep exotoxin antigens. You might be getting blood work for other stuff, but you already have the positive on strep.

 

Dr.K wanted levels on ASO and AntiDnase B ... this was what he asked for yesterday when I contacted him about her... also ped order some immunity blood work...

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I can't remember. Is your PANDAS son currently on antibiotics?

 

My son is on a very low dose of amox .. the bottle reads 400/5 M sus - he takes 1tsp 2 xs per day - he is 100 lbs 5 ft 9yo.... this is the dose that he was on after tonsil/adenoidectomy and the infect. dis. dr didnt change it... I requested a change to augmentin or augmentin XR but have not received a response since i sent the email and the links to the studies - I called his office to make sure he got the email and the nurse said he did as he forwarded it to her for review as well - I asked if he was able to call in the new antibiotic... and she said not yet but they would be in touch :lol:

 

I talked to ped about it today and she said bring him in to her and she would consider the initial antibiotic change... so I will give her the same studies and hope she changes his meds... and then keeps him on prof. course of them.... our appointment is at 930 on wed... hoping for the best!

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Did you ask the ped if she would change it or at least increase for the time being since the sibling has strep?

 

Just continue to keep an eagle's eye on him and start disinfecting the house.

 

I did ask - she said bring him in - I think she will change him to the agugmentin... I am praying I have finally won her over to our side! I have been watching him VERY close.... and I upped the amox to 2tsp 2 xs /day (has to be better than the 1) - I'll keep you posted on his progress and hopefully no backsliding on him :lol:

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When my 44 pound 6 year old got amoxicillan for a sinus infection, he took 750 mg two times a day. That's a total of 1500mg/day. The 800mg/day your son got does sound low, esp for a 100 pound kid.

 

Also, the amox didn't work for his sinus infection. We had to change it.

 

 

I know it is low - the 5mg dose is what the ped prescribed my baby 24 lbs! so when I told her that is what the ENT put him on after surgery to ward infection and then the ENT and neurologist and infect dis. drs kept him on - she was shocked - I told her that is was my thought that none of them understands the illness so rather than take a risk with a higher does they wanted to taked the wait and see approach with the amox... at the low dose :lol: I will say that my ENT is agood dr and dis know about PANDAS... so did the other 2 - the problem is they only know a teeny tiny bit and that is what they go by....

 

I think I will go back Med school as a hobby LOL!

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