Need Help - New to PANDAS

[MammaC]

I am new to PANDAS. My daughter (7 yo) was very sick in July of 09 (sore throat, fever, stiff neck). At the end of August she started presenting with repetitive gestures (eye/nose rubbing) which progressed to rolling her eyes up and back with mouth open and now more of a grimacing expression.

She had an eval by a pediatric developmental specialist who introduced me to PANDAS. He prescribed Intuniv for these motor tics which she is responding to very well. Anyone have any info on this drug?

However, I feel this is just a bandaid and not solving the problem and I want to get the ball rolling.

He also ordered a blood draw for a Strep antibody titer.

 

** Are there any other labs that should be ordered?? IgG levels?? Would a throat culture be warranted?? Anything else??? **

 

** I would like to start her on antibiotics. Which antibiotic is best to request?? **

 

Any help would be greatly appreciated!!!!

[sf_mom]

I am sorry your child has been sick. Welcome to the board, you'll find a lot of valuable information. The strep antibody titers will not tell you much. They have been all across the board for PANDAS children and when low Dr.'s often use titers to rule out PANDAs which should not be the case.

 

I would have the following test done.

 

* Throat culture to confirm no active strep or strep carrier (also family members)

* Strep Pneumococcal Antibody Titers (PANDAs children often show deficiencies)

* IgG Subclasses (PANDAs children are often low or low end of normal)

* CaM Kinase - Study that measures protein in blood - Madeleine Cunningham (Will tell you if she falls in the range of PANDAS)

 

Augmentin and Azithromycin have been helpful to many children and should demand a month long trail...... typically, PANDAs children need much, much longer term antibiotics. If you haven't read the following please do.

 

Frequently asked questions

 

http://www.latitudes.org/forums/index.php?showtopic=6265

 

Brief explanation of PANDAS -- signs, symptoms, treatment, and research

 

http://www.latitudes.org/forums/index.php?showtopic=6266

 

-Wendy

[coco]

I would also add a steroid burst to see if that helps alleviate symptoms -- either a 5-day or 30-day trial. Good luck.

[thereishope]

I just thought I'd be the one to add that if tics are involved, a steroid burst should be done with caution. From what some people have said is that TS and steroids are a bad combo and will make them worsen.

 

I agree with SFMom to test other family members too. even if they do not show any signs of being sick. Also, get the rapid and culture done. If the rapid comes back +, your child (and family members) will get their meds faster.

 

One other thing you can try is to give Ibuprofen and see if it eases some of the symptoms. It's another band aid, but if it works, it's a sign that there's some inflammation going on (specifically on the basal ganglia).

[MammaC]

I am sorry your child has been sick. Welcome to the board, you'll find a lot of valuable information. The strep antibody titers will not tell you much. They have been all across the board for PANDAS children and when low Dr.'s often use titers to rule out PANDAs which should not be the case.

 

I would have the following test done.

 

* Throat culture to confirm no active strep or strep carrier (also family members)

* Strep Pneumococcal Antibody Titers (PANDAs children often show deficiencies)

* IgG Subclasses (PANDAs children are often low or low end of normal)

* CaM Kinase - Study that measures protein in blood - Madeleine Cunningham (Will tell you if she falls in the range of PANDAS)

 

Augmentin and Azithromycin have been helpful to many children and should demand a month long trail...... typically, PANDAs children need much, much longer term antibiotics. If you haven't read the following please do.

 

Frequently asked questions

 

http://www.latitudes.org/forums/index.php?showtopic=6265

 

Brief explanation of PANDAS -- signs, symptoms, treatment, and research

 

http://www.latitudes.org/forums/index.php?showtopic=6266

 

-Wendy

[MammaC]

Thanks so much for all your help!!!

MammaC

 

 

I am sorry your child has been sick. Welcome to the board, you'll find a lot of valuable information. The strep antibody titers will not tell you much. They have been all across the board for PANDAS children and when low Dr.'s often use titers to rule out PANDAs which should not be the case.

 

I would have the following test done.

 

* Throat culture to confirm no active strep or strep carrier (also family members)

* Strep Pneumococcal Antibody Titers (PANDAs children often show deficiencies)

* IgG Subclasses (PANDAs children are often low or low end of normal)

* CaM Kinase - Study that measures protein in blood - Madeleine Cunningham (Will tell you if she falls in the range of PANDAS)

 

Augmentin and Azithromycin have been helpful to many children and should demand a month long trail...... typically, PANDAs children need much, much longer term antibiotics. If you haven't read the following please do.

 

Frequently asked questions

 

http://www.latitudes.org/forums/index.php?showtopic=6265

 

Brief explanation of PANDAS -- signs, symptoms, treatment, and research

 

http://www.latitudes.org/forums/index.php?showtopic=6266

 

-Wendy