Hello again...

[browneyesmom]

Hi everyone,

 

It's been quite a while since I've posted... recently, I was locked out of the forum and could not get online! I finally got in touch with someone who reset my password for me, so I'm all set now!

 

My daughter, who is now 11 years old (diagnosed at 9 years old) had Tonsillectomy & Adenoidectomy in August 2009. She did improve for several months, until she caught strep again in Spring 2010. We've been having trouble eradicating in ever since. I brought her to our Immunologist in October and he ran labs. She was found to be deficient in IgA & IgG. He ordered Hizentra for weekly Subcutaneous infusions. She started last Wednesday.

 

I need to scoot.... she needs me right now.

 

One thing before I go... she is interested in a forum where she can talk with other kids who are going through the same thing... for support. I'm trying to find out if anyone knows how we might go about starting one here... if anyone knows, please let me know. Thanks & hope you are all finding health...

[nevergiveup]

I just want to recommend converting the sub q treatments to ivig. Sub q does not help autoimmune disease only immune deficiencies. But ivig helps both, my immunologists does not offer up sub q to pandas children. She treats many immune def autoimmune combo kids and none receive sub q. But many of her immune def only do receive sub q and and it is HIGHLY recommended for this. Insurance should cover ivig and the highest dose possible every 21 days for my immunologists shows the best symptom remission for autoimmune disease.

[browneyesmom]

I just want to recommend converting the sub q treatments to ivig. Sub q does not help autoimmune disease only immune deficiencies. But ivig helps both, my immunologists does not offer up sub q to pandas children. She treats many immune def autoimmune combo kids and none receive sub q. But many of her immune def only do receive sub q and and it is HIGHLY recommended for this. Insurance should cover ivig and the highest dose possible every 21 days for my immunologists shows the best symptom remission for autoimmune disease.

 

Thanks for the response... I guess I'm a little confused... how is immune deficiency different from autoimmune disease? Is the issue that PANDAS is an autoimmune issue and thus, she needs both areas addressed? Why does the SubQ not work for both? Thanks!

[emmalily]

Hi everyone,

 

It's been quite a while since I've posted... recently, I was locked out of the forum and could not get online! I finally got in touch with someone who reset my password for me, so I'm all set now!

 

My daughter, who is now 11 years old (diagnosed at 9 years old) had Tonsillectomy & Adenoidectomy in August 2009. She did improve for several months, until she caught strep again in Spring 2010. We've been having trouble eradicating in ever since. I brought her to our Immunologist in October and he ran labs. She was found to be deficient in IgA & IgG. He ordered Hizentra for weekly Subcutaneous infusions. She started last Wednesday.

 

I need to scoot.... she needs me right now.

 

One thing before I go... she is interested in a forum where she can talk with other kids who are going through the same thing... for support. I'm trying to find out if anyone knows how we might go about starting one here... if anyone knows, please let me know. Thanks & hope you are all finding health...

 

 

http://www.pandas-syndrome.webs.com/ There's a few younger kids who talk on here...if you look through the members you can see their ages are listed.

[nevergiveup]

Pandas is an autoimmune reaction to strep. There is a high correlation between immune deficiencies and autoimmune diseases. (I believe close to 60 percent). The immune def may have caused the panda reaction. Pandas is not an immune deficiency. Your child has low IGG and IGA therefore has an immune deficiency, but the pandas is an autoimmune reaction maybe intiated by the fact the she could not fight infection well. IVIG can in theory redirect the autoantibodies, but sub q does not do that. Push for ivig, sub q will only help one of her medical issues, ivig may help both.

[EmersonAilidh]

I don't know about big forums, but I'd talk to her!

[browneyesmom]

Been a tough few days here, but checking in for a moment before going to sleep in these wee hours.

 

Emmalily, thanks for the link - she did register on that forum (found that one herself, actually) & is starting to receive some responses.

 

Never Give Up...thanks for the clarification. I'll keep that in mind.

 

Emerson Ailidh, thank you!!! I may very well take you up on that...