Immune deficiency foundation

[kimballot]

As I have traveled the PANDAS path, DS15 has been diagnosed with Common Variable Immune Deficiency in addition to PANS. His immune deficiency is not severe by total antibody numbers (HIs initial pediatrician told me it was "nothing"), but is severe if you look at specific types of antibodies - in his case lack of protection for 11/14 s pnemoniae titers and low IgA. The more important piece, thought, for his CVID diagnosis is a history of chronic severe sinusitis from birth, and improvement seen with tonsillectomy. It all fits together... crummy immune system cannot clear sinus gunk, group A strep and strep pneumonia sinus infections, eventual autoimmune reaction to all of this in the form of PANS. Now he has bartonella - probably has had it for years. Immunologist says lots of kids pick up bartonella along the way, but frequently are able to clear it on their own. Not DS with the crummy immune system.

 

Recently, I contacted the Immune Deficiency Foundation to see if they could help me to explain CVID and IVIG to the school. I spoke with a wonderful woman who sent me lots of information to share with the school. She also put me in touch with other parents of kids with CVID. The kids also had histories of periods of sensory processing problems, anxiety, and such. It did not sound all that different from what many of us describe. The organization also has conventions and gatherings for the kids, and advocacy for legislation regarding IVIG and other issues.

 

So... my question is... has anyone else worked with this organization and found them helpful? If you haven't you might find their information beneficial - even if your child has not been diagnosed with immune deficiency. Their website does a good job explaining IVIG and autoimmune disorders too. Also, I am wondering if they should have a PANS presentation at their next gathering - I have a feeling there are some PANS kids out there who are not aware of the reason for their sudden-onset symptoms.

 

Here is the website: http://primaryimmune.org/

[cobbiemommy]

They are very helpful. I was on their website earlier about IVIg appeals. DS was diagnosed with primary immunodeficiency and they have been very kind to us as well!

[mdmom]

Yes, I have worked with the IDF and found it to be a good resource. When I was fighting my insurance company last fall for IVIG (for CVID), they had one of their consulting docs look at our case. However, he basically said that PANDAS/PANS is not a proven disorder, so this was disappointing to hear. Perhaps the IDF could use some educating by parents dealing with PANDAS/PANS.

 

The IDF is in my backyard here in the Baltimore area.

[kimballot]

MDmom - perhaps you could be involved in some educating?!? Look at how far OCDfoundation has come and all of the support we are able to generate from that organization! I wonder if we could arrange for Swedo or Murphy or Cunnigham to present to IDF at some point - similar to their presentations at OC foundation and autism one?

[philamom]

Thanks for posting the link kimballot. I printed off the page explaining CVID. Interestingly, it mentions GI problems. There's been a lot of recents posts here on chronic stomach complaints. It also mentions Giardia Lambiaa, which my daughter had three years ago. She never swam in a lake, exc - so we wondered how she contracted it.

 

"Some patients with CVID report gastro complaints such as abdominal pain, bloating, nausea, vomiting, diarrhea and weight loss"

 

My daughter also had chronic sinusitis since 18 months of age that has resolved with IVIG.