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Who else here is dealing with primary immunodificiency? Just curious.


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My daughter was diagnosed with PI. We have not had the follow-up appt post blood work yet, that is on the 23rd. I will have more information then of course. I already called and got a full patient resource kit from Baxter about the condition and IVIG with information for me and kiddo (the kit is awesome so far). Kiddo relates to stuffed animals an incredible amount so the Igi will fit right in and may become the new favorite (I have not given her anything from the kit yet). We did four T & A's on stuffed animals before she had hers done and it was SOOOOOOO helpful for her to help process the whole experience.

 

I do not have any specific question yet, just curious who else is dealing with this.

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From what I've read on this forum over the years and from what I've learned from a few of the popular PANDAS docs, many children with PANDAS/PANS also have a P.I.

 

My son has Common Variable Immune Deficiency (CVID) and he gets IVIG for this diagnosis; however, the IVIG also hopefully treating his PANDAS/PANS symptoms.

 

 

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We may or may not. DD's numbers are consistent with CVID, but her clinical presentation is not. We have, so far, done a single dose of IVIG (high dose) and that got her back to 100% in terms of PANDAS behaviors/symptoms. We are watching and waiting to see if it holds. We're currently 5.5 months post-IVIG. Should be doing bloodwork early summer to see what her IgG/IgA numbers look like as the IVIG moves out of her system (we tested in January and again in March. January ##s were high as expected based on the IVIG. The numbers dropped by March, but not to the low low levels they were at prior to IVIG).

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I'll add that ds11 is always bottom of range or just below bottom of range for generalized igm. This is a known, very rare deficiency and there is no treatment protocol. Fortunately he is rarely sick.

 

Anyone else have this?

 

 

We have low IgG and IgA.

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Thought I'd mention that if your child does get diagnosed with a PI and you are considering treating PANDAS with IVIG, you will have a good chance of getting the IVIG covered with the PI diagnosis. I do not believe any insurance companies are currently covering IVIG for PANDAS.

 

But a warning....

 

The IVIG dose for PI is much lower than for PANDAS. Many on this forum have reported a lower dose of IVIG made their child's PANDAS symptoms worse.

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Thought I'd mention that if your child does get diagnosed with a PI and you are considering treating PANDAS with IVIG, you will have a good chance of getting the IVIG covered with the PI diagnosis. I do not believe any insurance companies are currently covering IVIG for PANDAS.

 

But a warning....

 

The IVIG dose for PI is much lower than for PANDAS. Many on this forum have reported a lower dose of IVIG made their child's PANDAS symptoms worse.

 

Thank you. Her immuno has discussed that PI would help get IVIG covered. We think she has some kidney disease (still trying to get a handle on this one), so she would not be eligible for HD IVIG anyway.

 

Since her numbers are low, but not incredibly low, I am looking into IVIG alternatives for the time being.

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re: the IgM, I think the poster was referring to Selective IgM deficiency (SIgM), which is rare. My dh seems to have that (the rest of his immune stuff is still being evaluated so IgM def is all that we're sure of right now). His numbers, as an adult, fall around mid 20s. My 13 yo (PANDAS/CVID) dd's IgM levels are low-mid 20s. My ds, also PANDAS/CVID, has the most severe IgM deficiency of the three. His IgM levels fluctuate between being entirely absent and being barely detectable (around 6).

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