Successful IVIG without Tonsillectomy

[KeithandElizabeth]

Hello:

 

This is my first post. I have been reading your posts during the last 3 months as we have tried to figure out what was happening to our 7 year old son.

 

After we met via the phone with Dr. K, we are almost certain he has PANDAS and we are in the process of trying to find someone in the Denver/Boulder area to help with IVIG.

 

I have 2 questions.....

 

1. Does anyone know of someone in the Denver/Boulder area who works with PANDAS?

 

2. Has anyone had a successful IVIG without doing the tonsillectomy? Our son does have large encrypted tonsils, however, Dr. K said that he doesn't believe a tonsillectomy is correlated to a successful IVIG. And our nutritionist is encouraging us to keep the tonsils and instead focus on healing our sons gut. She believes that one we heal his gut, we will heal his tonsils as well as the rest of his immune system. This is such a hard decision.

 

Thank you all for sharing all of your experiences. We feel as though we have learned so much from all of you!!!

 

Elizabeth

[EAMom]

Welcome,

 

here are a couple of old posts on tonsilectomy http://www.latitudes.org/forums/index.php?...art=#entry30859 and more recently http://www.latitudes.org/forums/index.php?showtopic=5115

 

We just did IVIG last week (too early to tell if it was sucessful) without tonsillectomy. I think a lot of us (most?) have done it without tonsillectomy.

[ShaesMom]

Welcome. My dd7 had IVIG a month ago without having a tonsillectomy. In fact, no one has ever suggested that she needed one. Has a doctor recommended having his tonsils removed?

 

IMO-if it was me in your situation I would be asking myself the following questions:

 

1) Did my child have chronic infections prior to the Pandas/strep that may have caused the encrypted tonsils? Sinus infections, URI's etc...

2) Does my child seem to have Pandas flairs when he has an infection other than strep?

3) If yes to either above, would removing the tonsils reduce his chances of getting other infections thereby reducing his chances for the Pandas to return?

4) The nutritionist believes that if we heal his gut his tonsils will improve but do I agree or disagree? How much experience does a nutritionist have with tonsils??

5) Is it possible that there is an underlying immune issue that we haven't found yet?

6) If we chose not to do a tonsillectomy and the Pandas returns/doesn't go away will we regret the decision not to have them removed?

 

Sorry, I don't know of anyone in the Denver area who can be of help.

 

In the case of my dd, she actually does have an additional immune system issue. She has normal levels of all immunoglobulins (ig's) but they do not work properly. Therefore, her body does not fight off infection. If we had not discovered this, I am completely convinced that IVIG would not work over the long term because the next time she comes in contact with strep or another illness her body still won't know how to combact the infection and she would just get sick again. The antibodies in IVIG naturally die off within 3-4 weeks. She will be receiving IVIG monthly (a smaller dose than what is recommended for Pandas).

 

Sam

[KeithandElizabeth]

Welcome. My dd7 had IVIG a month ago without having a tonsillectomy. In fact, no one has ever suggested that she needed one. Has a doctor recommended having his tonsils removed?

 

IMO-if it was me in your situation I would be asking myself the following questions:

 

1) Did my child have chronic infections prior to the Pandas/strep that may have caused the encrypted tonsils? Sinus infections, URI's etc...

2) Does my child seem to have Pandas flairs when he has an infection other than strep?

3) If yes to either above, would removing the tonsils reduce his chances of getting other infections thereby reducing his chances for the Pandas to return?

4) The nutritionist believes that if we heal his gut his tonsils will improve but do I agree or disagree? How much experience does a nutritionist have with tonsils??

5) Is it possible that there is an underlying immune issue that we haven't found yet?

6) If we chose not to do a tonsillectomy and the Pandas returns/doesn't go away will we regret the decision not to have them removed?

 

Sorry, I don't know of anyone in the Denver area who can be of help.

 

In the case of my dd, she actually does have an additional immune system issue. She has normal levels of all immunoglobulins (ig's) but they do not work properly. Therefore, her body does not fight off infection. If we had not discovered this, I am completely convinced that IVIG would not work over the long term because the next time she comes in contact with strep or another illness her body still won't know how to combact the infection and she would just get sick again. The antibodies in IVIG naturally die off within 3-4 weeks. She will be receiving IVIG monthly (a smaller dose than what is recommended for Pandas).

 

Sam

[KeithandElizabeth]

Hi Sam:

 

Thanks for your reply. How did you figure out that your child's immune system was not working in sync? My son does have quite a few off numbers: low calcium, low iron, high T-3, low CO2, low creatine, low ALT, and high BILI, high LYMPH-AUTO, high LYMPH-AUTO, ABS, and low magnesium.

 

I need to find an immunologist to work with us.

 

Thanks,

 

Elizabeth