Anyone diagnosed with CVID?

[cobbiemommy]

Has anyone been diagnosed with CVID? (Common Variable Immune Disorder) After comparing DS's labs and chart with definition of CVID, it is almost a perfect fit. This would explain why he did so well with IVIg and so crappy without. We have been trying to kill a sinus infection since October with no success. Even with steroids, Augmentin, Clarithromycin, and Minocycline it has not gone away.

 

For more information, go to the Jeffrey Modell foundation website. Very interesting.

 

One page on a different site said that one in 50,000 develop the disorder. Is it really that low, or are most people just misdiagnosed??

[missionmom]

Answer YES. Since we've begun investigating PANDAS for DS1 (old guy, now 22, we were not as on top of it as all of you for many reasons), found DS1, myself, and DS2 all have CVID. Know without even testing that DS3 has it also. Description fits like a glove. I have shared this info with my extended family, and it is helping them understand some odd ailments, or chronic malingering ailments as well. Good luck and don't believe that you cannot boost your immune system. There are many things my immediate family does that has kept us much healthier than my sibling's families.

[kimballot]

Has anyone been diagnosed with CVID? (Common Variable Immune Disorder) After comparing DS's labs and chart with definition of CVID, it is almost a perfect fit. This would explain why he did so well with IVIg and so crappy without. We have been trying to kill a sinus infection since October with no success. Even with steroids, Augmentin, Clarithromycin, and Minocycline it has not gone away.

 

For more information, go to the Jeffrey Modell foundation website. Very interesting.

 

One page on a different site said that one in 50,000 develop the disorder. Is it really that low, or are most people just misdiagnosed??

 

 

I believe many of dr. Bs patients are given the diagnosis of CVID. I suspect there are many children with PANS who fit the description. My son has CVID. He gets IVIG every 8 weeks. He has not had a sinus infection since he began IVIG and it was chronic for his entire life prior to IVIG. PANS symptoms way down without the constant infection and unrelenting attack on his brain.

[cobbiemommy]

Thank you both. Missionmom, what are you doing in your family to help with the immune issues? I am hoping that we do get approved for IVIg. We will talk to Dr. B tomorrow, so wish us luck. Can't wait to get lots of questions answered!

 

Cobbie

[missionmom]

Thank you both. Missionmom, what are you doing in your family to help with the immune issues? I am hoping that we do get approved for IVIg. We will talk to Dr. B tomorrow, so wish us luck. Can't wait to get lots of questions answered!

 

Cobbie

 

Good luck on the IVig! Please give us an update when you know.

For immune boosting.......

As someone alluded to in a different forum, I agree immunity begins in the gut so we start there with great probiotics and enzymes with meals. I have low IGa, so the gut is my weakest point. I have had to cut out processed grains, many milk products and limit whole grains as they will cause me to be symptomatic in the absence of obvious illness. Working on ph level is great too. For ph and digestion (great for gerd even though it may seem counter intuitive to add what seems to be acid) beginning the day with warm water and 1/2 squeezed lemon in it is easy and works great.

 

We use Kyolic Immunity Formula when challenged with any illness or when close proximity to illness (lots of great goodies in that), Olive Leaf Extract, Elderberry Extract for cold/flu season (this is so yummy I think any child would take it), Coconut oil 2 - 4 tbsp per day at first sign of any throat tingle. DS2 with cold sores also uses L-lysine.

 

Am also considering pursuing a homeopathic route, after DS1 finishes the university neuro docs and most likely IVig. Would like to try this, but doesn't sounds like a difficult way to have maintenance!

 

"What can we do to mitigate this immune system deficiency?" I asked the immunologist regarding our 3 diagnoses. "Nothing", he replied (other than IVig). NOT TRUE! So disheartening to have our mainstrean docs go to school for so long and study so little of nutrtition, supplements, food as medicine, etc. Sigh.