Re: FW: new member, questions

[Guest guest]

As I mentioned in my earlier posts, my son has not been diagnosed with this,

but after doing some research PID seems like a real possibility. My son has

had more tests than I can remember trying to find an answer to his medical

problems. He also has seizures and sees a neurologist. However, the

seizures are well under control with medication at this time. I also read

that alot of the children are small. My son has grown taller, but has a hard

time gaining and maintaining his weight. My son was also born with severe

bilateral club feet, which after years of casting and surgery is under

control at this time. I am very interested to hear which tests were done

specifically, and if any other children get sick on " schedule " like my son.

As i mentioned earlier, we are waiting to hear about testing on his T-cells,

Thanks.

Jana

[Guest guest]

Jana - what seizure medicines is he currently on? We have a member or two

who have children with seizures and have a vast array of experiences dealing

with them. Macey had them as a baby but thankfully has not had any since

about 6 months old.

Macey had the Pneumococcal antibody levels run, mitogen and antigen tests

(which I think are T-cell related), Bacteriophage x174, IgG, IgA, IgM and

IgE levels run every so often, diphtheria and tetanus antibody levels. Next

spring she will have repeat allergy testing done. Macey hasn't really shown

any type of preference for what part of the month she gets sick.

Ursula - & Macey (4 yr old w/CVID) mom

Re: FW: new member, questions

From: JTetra7003@...

As I mentioned in my earlier posts, my son has not been diagnosed with this,

but after doing some research PID seems like a real possibility. My son has

had more tests than I can remember trying to find an answer to his medical

problems. He also has seizures and sees a neurologist. However, the

seizures are well under control with medication at this time. I also read

that alot of the children are small. My son has grown taller, but has a

hard

time gaining and maintaining his weight. My son was also born with severe

bilateral club feet, which after years of casting and surgery is under

control at this time. I am very interested to hear which tests were done

specifically, and if any other children get sick on " schedule " like my son.

As i mentioned earlier, we are waiting to hear about testing on his T-cells,

Thanks.

Jana

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