Family Update

[Guest guest]

Yesterday we were at Cincinnati Children's trying to interpret the strange

results we have gotten on Hayden, Evan and Kelsey's immunology testing. The

good news is that Dr. Bleesing feels that their biggest problems are

allergy-related. This made and I feel better about finding new homes

for our pets and making other changes at home. They do have some mild

abnormalities in their immune system, but Dr. B doesn't feel like they are

life-threatening at this point and do not require IVIG!!! (HOORAY!) He also

said that they can't be classified into any one type of primary immune

deficiency (we've heard that before). We also took blood to test for the

complement deficiency, we found the defective gene in Conner and there is a

good chance that the other kids have it too. If that's the case then I'm not

sure what the plan is, but I know that Dr. B will be using our family as a

case study for this type of disorder as it is very new and they don't have

much information on it.

The not so great news in my mind is that Dr. B also feels that Conner

started off like the other kids with just mild abnormalities. He believes

that something triggered the severe decline in his immune function, he feels

that it was Conner's anti-seizure meds, our old Immuno felt that it was from

the Epstein-Barr Virus. So, I guess that tells us that the same thing could

happen to the other kids, but we won't likely have any control over it.

Obviously we can't dwell on it, but I imagine that I will always think about

that possibility.

Lastly, we will be returning this summer for further testing to try to

pinpoint exactly what is wrong with Conner's immune system. A new

bacteriophage test is about to be released and Dr. B should have it within

the next few months. He says that this test will be able to tell us for sure

if Conner has a combined immune disorder (dysfunction in both B & T cells)

or just a B-cell disorder. I think I've mentioned that he also has very low

NK cell function and a complement deficiency, there doesn't appear to be

much we can do about those things, other than IVIG.

By the way, we love the staff at Cincinnati Childrens, they are always so

thoughtful and caring! They brought a gift in for Kelsey since they knew her

birthday was today!

Thanks again to everyone who answers my many questions!

Mom to Conner (11, Asperger's, mild CP, partial seizures, asthma, GERD,

Hashimoto's disease, hypogammaglobulinemia, complement deficiency, antibody

deficiency, NK cell defect, and resolved adrenal insufficiency),

Hayden (11, PDD-NOS, IBS and moderate hearing loss/aided),

Evan (11, asthma and mild hearing loss/unaided),

and Kelsey - (10 TODAY!)

Please visit us at www.caringbridge.org/in/connersmith