6 weeks after PEX

[colleenrn]

How did they diagnose CVID- was it just by the low IgG or other tests?

 

I was looking at the clinical picture of CVID and it fit my childhood to a tee. Since my first child was diagnosed with PANDAS 8 years ago, I began to realize that I was a PANDAS child, but when I read about CVID, I could not believe what I was reading b/c I had a lotl of those symptoms/diseases (lots of strep, lots of ear infections, mono, camylobacter, pneumonia 2-3 times before the age of 12)

 

I need to read more about it, but any info that anyone has would be appreciated! I have never had my children's IgG,IgA, IgM tested. Should I? What didferent treatments would I do if there was something off with it?

 

Thanks!

Colleen

[ShaesMom]

Colleen,

 

Check out my post titled "Immunological BloodWork" from last friday. I have all the tests listed that need to be done for a dx of CVID. Depending on the type of immune deficiency, the most common treatment is monthly IVIG. Insurance should pay for it too!

 

You can also visit the Immune Deficiency Foundation's website at www.primaryimmune.org Click on the publications link and then Patient and Family Handbook, read chapters 1, 2 & 10. CVID can run in families.

 

Sam

 

How did they diagnose CVID- was it just by the low IgG or other tests?

 

I was looking at the clinical picture of CVID and it fit my childhood to a tee. Since my first child was diagnosed with PANDAS 8 years ago, I began to realize that I was a PANDAS child, but when I read about CVID, I could not believe what I was reading b/c I had a lotl of those symptoms/diseases (lots of strep, lots of ear infections, mono, camylobacter, pneumonia 2-3 times before the age of 12)

 

I need to read more about it, but any info that anyone has would be appreciated! I have never had my children's IgG,IgA, IgM tested. Should I? What didferent treatments would I do if there was something off with it?

 

Thanks!

Colleen

[Megs_Mom]

Isn't it odd when you start to see your own childhood reflected in this info? I was also a rather sickly kid - had strep all the time, mono, etc - and keep getting strep to this day - I am the only adult I know that calls up the doc & asks for a Z-pac - and is always right! I can feel it coming on - it always leads with a headache. Before I had Meg, I thought I was lucky, as Strep is only a pain for me for 24 hours, as I always get a z-pac after throat culture, and the pain is gone in a day.

 

Anyway, the reason I am hopeful for a CVID diagnosis, in some odd way, is that you never have to say PANDAS again to a skeptical doctor. You can just say CVID, and doctors respect it, and insurance pays for the treatment. They can have IVIG for as long as it is needed. The other one that reads very very similar to PANDAS, and covers IVIG is iGg subclass deficiency - especially iGg2. I found this very interesting, as one of the big signs is ear infections, which Meg has had a ton of, and still gets - and it is a deficiency that tends to resolve in puberty! So who know, once we find someone to do these tests, Meg may not have, but I am not surprised that so many people are finding this pattern for their kids - it makes complete sense.

 

Lots of immunologists are really primarily allergists - Pediatric specialists in PID and CVID are actually kind of rare. So either be buttoned up on the tests that you want, or find a specialist - they are usually at research hospitals.

 

How did they diagnose CVID- was it just by the low IgG or other tests?

 

I was looking at the clinical picture of CVID and it fit my childhood to a tee. Since my first child was diagnosed with PANDAS 8 years ago, I began to realize that I was a PANDAS child, but when I read about CVID, I could not believe what I was reading b/c I had a lotl of those symptoms/diseases (lots of strep, lots of ear infections, mono, camylobacter, pneumonia 2-3 times before the age of 12)

 

I need to read more about it, but any info that anyone has would be appreciated! I have never had my children's IgG,IgA, IgM tested. Should I? What didferent treatments would I do if there was something off with it?

 

Thanks!

Colleen

[mom md]

I have been reading about CVID and I will definitely get this looked at when we go to the immunologist. My son has several of the signs and it may explain how we got on this journey.

On a positive note...we had a great first day of school. We went from school to a doctor's appointment, errands, baseball, and then racing to bed. At any point along the way we had multiple opportunities to see regression and had none. He truly had a PERFECT day. I, on the otherhand, did not do as well. After a great day I told him to go upsatirs and get in the shower. I walked upstairs 30 minutes later and he was playing in his room and did nothing I had asked him to do. I yelled at him and told him to get in the shower, etc. I really over-reacted. I was talking to my mother-in-law tonight and I think I have some PTSD (post-traumatic stress disorder). When I see him wandering around his room and playing, my mind goes straight to PANDAS. I get anxious that he has lack of focus, etc again and I really over-react mentally and tonight verbally. Looking back now he had MULTIPLE TIMES today he could of showed PANDAS issues and did not. Not one. He has had PEX and is cured. I now need to learn to be normal. As my pediatrician told me today though..."it is like a parent of a kid with leukemia, every time they get a bruise they have a hard time not going there mentally". Hopefully, time will help cure. I realize the slight signs we saw last weekend were just a "sawtooth" moment and we really are better. Now I need to give myself the patience to do the same.

 

Isn't it odd when you start to see your own childhood reflected in this info? I was also a rather sickly kid - had strep all the time, mono, etc - and keep getting strep to this day - I am the only adult I know that calls up the doc & asks for a Z-pac - and is always right! I can feel it coming on - it always leads with a headache. Before I had Meg, I thought I was lucky, as Strep is only a pain for me for 24 hours, as I always get a z-pac after throat culture, and the pain is gone in a day.

 

Anyway, the reason I am hopeful for a CVID diagnosis, in some odd way, is that you never have to say PANDAS again to a skeptical doctor. You can just say CVID, and doctors respect it, and insurance pays for the treatment. They can have IVIG for as long as it is needed. The other one that reads very very similar to PANDAS, and covers IVIG is iGg subclass deficiency - especially iGg2. I found this very interesting, as one of the big signs is ear infections, which Meg has had a ton of, and still gets - and it is a deficiency that tends to resolve in puberty! So who know, once we find someone to do these tests, Meg may not have, but I am not surprised that so many people are finding this pattern for their kids - it makes complete sense.

 

Lots of immunologists are really primarily allergists - Pediatric specialists in PID and CVID are actually kind of rare. So either be buttoned up on the tests that you want, or find a specialist - they are usually at research hospitals.

 

How did they diagnose CVID- was it just by the low IgG or other tests?

 

I was looking at the clinical picture of CVID and it fit my childhood to a tee. Since my first child was diagnosed with PANDAS 8 years ago, I began to realize that I was a PANDAS child, but when I read about CVID, I could not believe what I was reading b/c I had a lotl of those symptoms/diseases (lots of strep, lots of ear infections, mono, camylobacter, pneumonia 2-3 times before the age of 12)

 

I need to read more about it, but any info that anyone has would be appreciated! I have never had my children's IgG,IgA, IgM tested. Should I? What didferent treatments would I do if there was something off with it?

 

Thanks!

Colleen