Does removing the tonsils cure PANDA?

[ScoutsMom]

My son was diagnosed with PANDAS last year after a fear of tornados turned into a fear of going blind, then a fear of choking which lead to an inability to eat most foods. The fear of choking went on for 24 hours before I realized something was very wrong and took him to our Pedi who luckily saw a possible link to PANDA and had his ASO levels tested. She concluded that he did have PANDA and put him on antibiotics for 10 days. He was cured almost immediately of the anxieties, but mood lability lasted for nearly 6 months. He's been well for about 6 months up until about 2 weeks ago when I noticed minor changes in his behavior that raised huge red flags for me and recently lead to two major anxiety attacks that caused severe stomache aches and convulsing. Separation anxiety, sensitivity, worrying etc. were among the recent mix of changes. We tested his levels again and the Pedi advised me that "some were up, some were down". Her next course of action was putting my little guy on Zoloft, which kills me but I realize is necessary as a child age 6 shouldn't have to worry worry worry to the point of being physically ill. I plan to keep him on this until we can beat this disorder and was wondering if anyone has heard of the success many parents are having when the Tonsils are removed? Many are saying that it's the only known cure of PANDA, but I don't see this mentioned in any of the emails on this site. I am committed to finding a solution and am well-prepared to have his removed if it's going to help. I am also concerned that extensive use of antibiotics will have additional negative effects and lead to new problems.

 

As a single mother, without the emotional support of my son's father this is breaking my heart and until I found these support groups I've felt so alone.

I thank you all for sharing your experiences.

[Claire]

Hi Scouts,

 

No time for a long post right now but here is a link with a study or two mentioned on tonsils. Hard to find which study though!

 

http://www.neurotransmitter.net/pandas.html

 

Anecdotally, I have heard mixed stories on that tonsil removal.

 

Welcome to the board! I am sure others will have more info. Chemar in particular has supplements for her son's OCD that prevented him from needing meds. They may be worth investigating, but apparently you can't do both at once.

 

For my son's lingering (much more minor though) fears after strep, we used an air filter and focused on mold elimination. Also melatonin (1/3 mg) at night solved his night fear issues--I feel it broke the cycle there.

 

Intense fears are so sad, I have been there and I am sorry for you and your child.

 

I encourage you to read other threads here, so many of us have found paths to help our children back to happier lives!

Claire