Documentation to bring to ENT?

[Tamistwins]

Hi everyone,

 

I was wondering if anyone has any links to specific articles to bring to an ENT in preparation for a tonsillectomy/adenoidectomy. I was going to go to a surgeon who is aware of PANDAS, but, I thought I would first try to go to someone in state who actually removed my tonsils so many years ago. He is a very good surgeon but his bed side manner isn't the best. I want to be prepared to explain why I want the surgery for both my children even if on appearance the tonsils don't seem enlarged. Any help would be greatly appreciated!

 

 

Thank you,

Tami

[Alex]

Hi Tami,

Our local ENT did a T&A on my son recently based on PANDAS symptoms and persistently elevated strep antibody levels. The links below are the stuff I brought to the appointment where we discussed the T & A as an option. I didn't want to sell him on the idea so much as discuss it as a possible option after PEX, multiple IVIG's and continual antibiotics hadn't worked for PANDAS and hadn't brought the antibody levels down.

 

The first set of links are some papers from Pubmed where tonsillectomy was used for PANDAS successfully. The springerlink page is a paper where tonsillectomy was successful at bringing ASO titres down in almost 90% of patients by the one year mark after surgery. The link is just to the abstract. I paid for the paper and brought to the appointment. The last two links are a couple of articles on the 'Psychology Today' website by a psychiatrist who treats PANDAS with T & A surgery. He claims that the international approach to PANDAS is T & A surgery. The reader comments for the first article are very interesting as well. He also makes it clear that he doesn’t believe you have to have elevated ASO/ anti-dnase b for T & A to be warranted. We corresponded with him and he got right back to us. I imagine he could put you in touch with one of the ENT's he uses if it would be of help. I think he is too confident that T & A is the solution to PANDAS but I think there is enough evidence to support it being part of the solution in certain cases. We don't regret it so far. PM me if you have any other questions.

Alex

 

http://www.ncbi.nlm.nih.gov/pubmed/21466900

http://www.ncbi.nlm.nih.gov/pubmed/20207613

http://www.ncbi.nlm.nih.gov/pubmed/18817720

http://www.ncbi.nlm.nih.gov/pubmed/12880661

 

http://www.springerlink.com/content/h379182709163650/

 

http://www.psychologytoday.com/blog/attention-please/201102/evil-pandas-scourge-the-brain

http://www.psychologytoday.com/blog/attention-please/201107/evil-pandas-part-ii-adult-affliction-treatment

[Tamistwins]

Hi Tami,

Our local ENT did a T&A on my son recently based on PANDAS symptoms and persistently elevated strep antibody levels. The links below are the stuff I brought to the appointment where we discussed the T & A as an option. I didn't want to sell him on the idea so much as discuss it as a possible option after PEX, multiple IVIG's and continual antibiotics hadn't worked for PANDAS and hadn't brought the antibody levels down.

 

The first set of links are some papers from Pubmed where tonsillectomy was used for PANDAS successfully. The springerlink page is a paper where tonsillectomy was successful at bringing ASO titres down in almost 90% of patients by the one year mark after surgery. The link is just to the abstract. I paid for the paper and brought to the appointment. The last two links are a couple of articles on the 'Psychology Today' website by a psychiatrist who treats PANDAS with T & A surgery. He claims that the international approach to PANDAS is T & A surgery. The reader comments for the first article are very interesting as well. He also makes it clear that he doesn’t believe you have to have elevated ASO/ anti-dnase b for T & A to be warranted. We corresponded with him and he got right back to us. I imagine he could put you in touch with one of the ENT's he uses if it would be of help. I think he is too confident that T & A is the solution to PANDAS but I think there is enough evidence to support it being part of the solution in certain cases. We don't regret it so far. PM me if you have any other questions.

Alex

 

http://www.ncbi.nlm.nih.gov/pubmed/21466900

http://www.ncbi.nlm.nih.gov/pubmed/20207613

http://www.ncbi.nlm.nih.gov/pubmed/18817720

http://www.ncbi.nlm.nih.gov/pubmed/12880661

 

http://www.springerlink.com/content/h379182709163650/

 

http://www.psychologytoday.com/blog/attention-please/201102/evil-pandas-scourge-the-brain

http://www.psychologytoday.com/blog/attention-please/201107/evil-pandas-part-ii-adult-affliction-treatment

 

THank you so much Alex, I haven't had a chance to review the links yet but I greatly appreciate all the information. How is your son doing after the T&A?