Opinions and help needed...

[matis_mom]

DCmom and SF mom, Thank you for the information. So, it looks like I am stuck on the blood draw until after the holidays.

 

A question though, if the ASO titers are negative and the Cam Kinase is negative, will the out-of-state specialist doctors give a trial of antibiotics just based on symptoms????? And keep in mind they are milder symptoms. The tics have pretty much stopped.

My thoughts are similar to what everyone else has said...

1) ADHD symptoms will get better in time. Just try to find coping mechanisms for now and avoid psychiatric drugs!

2) You may have re-tested too soon after that course of antibiotics, take her back now and have them do the rapid and the culture

3) Check all family members for strep

4) Start keeping a journal of behaviors/health (including other people in the family). Being able to tie things together may help with diagnosis

5) Get over the blood-draw thing... I know it's hard, but it only takes 10 minutes. Just think of all child and your whole family is going through because of this. I think my son's issues would have been caught a lot earlier if he had not been so afraid of needles! Months before he was diagnosed, the pediatrician order a Lymes test and a CBC, but the nurse only took one sample... Oh, my goodness! It was so traumatic that when I brought up the fact that the CBC wasn't done, the doctor said not to worry and we never did it... Now he still hates it, but with the numbing spray (I don't know what is called, it just makes it really cold) he is OK.

Hope this helps and your doctor gets the picture!

 

Oh, and one more thought... how come docs are so ready to try psychiatric drugs for ADHD, yet so hesitant to give antibiotics??? You could always present it this way. Could they just give you 30 days on a strong antibiotic and take it from there?

[Tattoomom]

Dr Cunningham's office is closed until the new year. You will not be able to do the blood draw until then, at that point you can email them for a kit and have the draw done at your doctor or lab.

 

 

Is this test an out-of-pocket expense?

[Tattoomom]

 

A question though, if the ASO titers are negative and the Cam Kinase is negative, will the out-of-state specialist doctors give a trial of antibiotics just based on symptoms????? And keep in mind they are milder symptoms. The tics have pretty much stopped.

 

 

 

I would like to know the answer to this question, too!

[sf_mom]

The out of state Dr.'s would most definitely give a trial of antibiotics based on clinic picture and perhaps a short steroid burst to confirm auto-immune. BUT, your child will need to be seen first prior to any prescription is provided. Although the Cunningham Test is well regarded it is still a study and is used as such. Any experienced PANDAs Dr. will not put any weight in ASO Titers some times they are present and sometimes they are not.

 

-Wendy