PANDAS and Tonsillectomy

amother

Lavender

Tue, Oct 20 2015, 5:11 pm

Hi my son unfortunately has PANDAS and we have been dealing with positive strep cultures and regression over and over for the past few years. Does anyone have any experience with this that had success with taking out the tonsils to stop the PANDAS???

amother

Copper

Tue, Oct 20 2015, 5:22 pm

No experience with tonsillectomy, but as another PANDAS mom, I wanted to lend my support and empathize. What other treatments have you tried already?

amother

Lavender

Tue, Oct 20 2015, 5:45 pm

Ty all so much I am so overwhelmed just don't know what to do...
What is Sandoz azithromycin?
He was on augmentin for a year and half and since then he keeps regressing... the augmentin kills his stomach so I don't want to do that anymore, we have been trying Zithromax, ibuprofen etc
Its not only when he has active strep, he just acts up randomly I guess someone in his class has strep then he acts up... sometimes I know that my younger child has strep when my older one acts up!
I am thinking of trying to take out his tonsils because they are so swollen so maybe it will help?
Any advice is appreciated

amother

Cobalt

Tue, Oct 20 2015, 5:49 pm

amother wrote:

Sandoz is a specific brand of azithromycin, recommended by pediatrician who has years of experience in PANDAS.
We did the tonsillectomy a month and a half ago and are still in treatment.
Tonsillectomy was on the radar for years even before the PANDAS, so PANDAS was the last straw.

amother

Cobalt

Tue, Oct 20 2015, 5:58 pm

amother wrote:

You are still in treatment for what? PANDAS?
Why was tonsillectomy an option for years?
Do you think it helped your child?

Yes, still in treatment for PANDAS. Just diagnosed 2 months ago. Tonsillectomy done a month and a half ago.
Tonsillectomy was on the table for years due to chronic strep that was borderline (5-6x per year since birth) and I'm just sorry we didn't do the tonsillectomy earlier, since this was something we were contemplating for years.
We took out the tonsils completely, did not do burn and scrape.

amother

Lavender

Tue, Oct 20 2015, 6:09 pm

Thank you, hope you see an improvement!
Copper amother what did you find that helped your child?
I just feel so bad for him! He has a hard time in school when he has it because he can't control himself and its just so hard... sob

amother

Copper

Tue, Oct 20 2015, 6:51 pm

My child had an excellent response to a very high dose of Azhthromycin protocol, which he will be on for years. Are you using a PANDAS specialist?

amother

Lavender

Tue, Oct 20 2015, 7:36 pm

Yes. I had seen dr shulman once and was continuing with my regular doctor and just emailing her but I think I will go back to her to discuss options... I didnt want to keep him on long term antibiotics because it really hurts his stomach...

amother

Peach

Tue, Oct 20 2015, 8:34 pm

My son was just diagnosed with PANDAS too. We are seeing dr schulman. He's on sandoz azithromycin for a month so far. His TICS are getting slightly better. I'm just worried what will happen when he gets off the medicine eventually.

Zeeskeit

Tue, Oct 20 2015, 10:54 pm

Hi fellow PANDA moms!

My son was also on zythromax for 1.5 years. B"H symptoms r gone.
Stick with Dr. Schulman and go for follow ups since the dose gets adjusted as the child grows. Also, follow her recommendation for omega and vitamin d and acidophilus so as to have maximum success without killing his gut.
As far as going off the meds, she does an extremely slow taper with consistant monitoring of symptoms so as not to rebound.

Good luck to all! There is a light at the end of the tunnel! I got my son back.

amother

Plum

Wed, Oct 21 2015, 3:54 am

I know someone who it worked for, a month after they had their sons tonsils removed , they took him off Zithromax ( he had pandas) he was better. I heard of someone else it worked for also but later on it came back.

amother

Black

Wed, Oct 21 2015, 8:54 am

Hi,
Reading this thread has raised a red flag for me. My 19th month old son had strep throat about 4 weeks ago. A couple of days after he finished his antibiotic I want back for another culture and he tested positive after the 48hr mark. Since he was feeling fine, and he is allergic to quite a few types of antibiotic my doctor told me to come back a few days later to retest. Lo and behold a week later and he tested positive again. my pedetrician concluded that he must be a carrier for strep and since it isn't dangerous for a child his age we should hold off from meds. Now ever since this happened this kid wakes up every night at 1am and cries incessantly (which could just be a bad habit!)
After chancing upon this thread I am having doubts and getting scared that he may have/get pandas.
Any advice, or insight?

observer

Wed, Oct 21 2015, 8:59 am

Tonsillectomy will only partially help because the issue is not the strep itself, but elevated strep antibodies.

So your child will be less likely to get strep, which will help somewhat. But whenever he/she is exposed to strep, from a sibling, someone in school, etc... the antibodies go up again.

amother

Cobalt

Wed, Oct 21 2015, 10:50 am

amother wrote:

Where are you located? Can you get to Schulman? The sooner it's dealt with the less treatment needed and the less possibly for long term effects.
Hug

amother

Black

Wed, Oct 21 2015, 11:13 am

amother wrote:

Where are you located? Can you get to Schulman? The sooner it's dealt with the less treatment needed and the less possibly for long term effects.
Hug

I live in Brooklyn but can't I first start at my local
Ped? Like taking blood work before assuming the worst?

amother

Peach

Wed, Oct 21 2015, 4:29 pm

I'm peach another. I would not go to your local ped. I went to my local ped over a year ago and he tested for pandas and said it was negative but then treated with an antibiotic just to be safe. But dr schulman reads the tests differently and runs different blood work and her antibiotic protocol is also diff and she said the antibiotic that my ped ha wouldn't help. Now it's a year later and I finally am going to dr schulman.