Is It Really Pandas?

[Pandamom]

Hello,

I am new to this forum and hope I am using it correctly. My daughter became very ill this past February. She is 12. Her symptoms included an obsessive fear of dying, which led to panic disorder w/ agorophobia; chronic congestion (can't figure this one out still); mild facial tics, vocal cord disorder, regressive behavior - watching preschool tv for hours, and bedwetting. Her pediatrician addressed her symptoms individually using Cefzil once which seemed to improve her condition, and finally sent me to a psychiatrist. Once she was on Pexeva and recieving CBT her condition improved dramatically. We changed pediatricians in July, because the congestion was so recurrent - our new doctor is homeopathic and she immediately picked up on the Pandas; tested the titers and they were elevated.

 

On the first day of school she did incredibly well. Her meds were Pexeva, valium, and risperdone for tics. Within a week she developed a sinus infection and the panic attacks began to occur. Her symptoms are milder than February, but still so severe that we have had to take her out of school. Her psychiatrist is changing her medications in the hopes of finding the right combination. The one symptom which has dramatically changed for the worse are the tics. Facial tics around the eyes, coughing and a neck muscle tic that moves from the right side to the left so quickly it looks like her head is a ping pong ball.

 

Does any of this sound familiar to anyone else? I keep wondering if it really is Pandas. If so, after reading some of your posts I think we need to be more agressive with the antibiotics and not rely on a penicillin shot once every three weeks.

 

Does this condition ever go away? At the beginning of this year, I had a happy, above average student who was so well rounded socially. Now her friends have pulled away because of some of the symptoms and she can't stay in the classroom without feeling panicked.

 

Any thoughts or insight is so greatly appreciated. No one I know has even heard of this syndrome.

Thanks, Tracy

[Chemar]

Hi Tracy and welcome

 

I have never personally had to deal with PANDAS as my son's tests were negative

 

however from all you are describing, your child sounds like a classic case.

 

honestly, from the experience of others documented here and elsewhere, it may well just be that you are using the wrong antibiotic. Ronna and Allison have recently reported good results with zithromax (azithromycin)

 

if your child is PANDAS symptomatic...all the other meds may well be innecessary and just prophylactic antibiotic treatment may be needed.

 

on a personal note, zyprexa had horrid side effects for my son, and was the med that finally made us go med free re the drugs for OCD and tics/TS

 

if your child is exhibiting the tics and phobias etc because of the PANDAS, then by eliminating the strep you should see a dramatic improvement in all the rest.

The other medication cocktail may well be hampering things rather than helping. Just my unqualified opinion!

I am sure others will have input too

[evie]

Hi Tracy and welcome to the forum.

My son is a PANDAS kid and your daughter sounds like a typical case with a sudden severe onset of symptoms.

What has worked for many of us in this forum was antibiotics.

We have a hard time finding the right one that works consistently for our child, but many have success with the Zithromax, as Chemar suggested.

You may want to consider checking for any food allergies such as gluten or casein intolerance. We recently tested our son and found that he has a significant intolerance, and many PANDAS children out there do too.

By eliminating the offending foods, so many have had success in reducing symptoms.

Good luck with your daughter!

[Pandamom]

Thanks Chemar and Evie,

 

Joining these discussions has helped me so much. We are seeing the psychiatrist this week and hoping he is open minded enough to try the antibiotics. I keep a log of her symptoms and after reading about everyone's experience here with antibiotics I reviewed the log and found that the two times she has been without tics in the last six months she was on antibiotics for sinus infections. We are also going to try and set an appointment with an immunologist and I will definitely ask about food allergies everywhere I go.

 

If you have any other suggestions I'd love to hear them.

Tracy and Tori