Re: Saw the new Immunologist

March 9, 2001

:

Hope you don't mind me putting my .02 in. I'm so glad you're finally getting

the full array of testing and can hopefully figure out what's going on. First

let me say that ear tubes are the best thing we ever did for . The

procedure was quick and easy, and other than the post-sedation crabbiness

(she was a wild animal for about 45 min. then okay), it was a breeze. Those

tubes ended ear infections for us, at least for the ear that kept the tube in

(one tube fell out within two months and that ear has gotten infected, but

the other one is still clear 16 mo. later!)

The other thing is I don't want you to go through what I did, seeing as your

kids are young, too. See, I had this idea that " the next set of tests will

tell us everything " . I'd have my hopes up and then the results would end up

creating as many questions than they answered. We would re-vaccinate for some

things and retest, and again I'd think, " This is it, now we'll know. " Partly

because of how complex the immune system is, how little is really known about

it and the age of the kids (there's still room for improvement and growth),

I'm now realizing there's no magic answer.

So yes, you'll hopefully get some answers with these tests, but prepare

yourself for also having more questions with them too. The test results may

be confusing, so feel free to ask any questions here, someone is bound to

have had experience in the area.

GOOD LUCK! Here's hoping you'll get some answers and relief!

(mom to , age 2, antibody def, IgA, IgM, IgG def - not on IGIV yet)

March 9, 2001

--Please keep us updated--i and at least one of my boys are IgA

def, and i would love to learn along with you. Our immuno has discussed

with us the higher risk of auto immune diseases, too, but did it in a

more gentle way, didn't upset me, just helped me to know i should keep an

eye out for it. Anyway, our immuno took lots of blood from all of us ,

too, i appreciated his thoroughness. I'll look forward to hearing about

your next appt wiht him! Maurita

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March 9, 2001

,

I'm glad you feel like you are finally getting somewhere with the new

immunologist. My son has been diagnosed with CVID. He has no IgA, low IgG,

and low IgM. When he was initially diagnosed our immunologist talked to us

about autoimmune diseases also. He was especially concerned because of the

elevated number of CD5 + B cells. These cells remain elevated (not high

enough to be the CD5/Cd19 PID). The immunologist keeps a close watch on him.

He sees him about 4 times per year for regular check-ups and usually 2 more

times for infection. He also orders labs at least 2 times per year. So far

Isaac is doing great. Actually, he has had his best winter ever.

Good luck! As said, you will have more questions - but at least you

will know which ones to ask. Also, once the labs come back your doctor will

be more confident about which direction to go. Keep us informed.

Kathy - mom to Isaac

March 9, 2001

HI ,

Glad to hear that your appointment went well. Why did the doc suspect

autoimmune in Grace? Mark has several autoimmune issues (leukocytoclastic

vasculitis, that perhaps could be caused from Sjogrens, Lupus or MCTD....we

may never know with certainty, he also has inflammatory bowel disease and

autoimmune thyroiditis). Mark's immunologist told me on Tuesday that he is

presently more concerned about the autoimmune diseases that Mark has then he

is of the PID at the prsent time, as far as Mark's health is concerned.

Mark is on Methotrexate to try to get the LCV into remission. If it goes to

the kidneys, heart etc he could be in serious trouble. If I can be of any

help in this area let me know.

Autumn (Mom to Mark Cd5-Cd19 PID and )

Saw the new Immunologist

> Well I took both kiddos to Children's Hospital in Cincinnati on Wednesday

to see the new immunologist. It went really well and I finally feel like

somebody is going to listen to us and do something! I had written out a

full history on both children and also brought records with me. The

resident that came in first said that he had thought this was an easy case

but unfortunately he was wrong....he said he needed to go get the attending

to find out what to do.

>

> The head immunologist came in to see us and said a few things. His first

concern was that although neither has had a life threatening reaction so far

that he is concerned for them in the future if we don't figure out exactly

what the deal is. I keep them pretty isolated now and he's concerned about

what will happen when they enter school. He said his level of suspicion is

very very high that Grace has an autoimmune disorder and he kept asking if

we have autoimmune (lupus) or cancer in the family.....kind of freaked me

out. He then said that both kids need to be on prophylactic meds and that

he wants me to keep them isolated the next few weeks to see if we can get

ahead of some of these infections.

>

> Caelan's ear is still infected and has fluid. Just finished 22 days of

Ceftin and we are now on 15 days of Bactrim. Of course 2 weeks before the

ceftin he finished cefzil and before that was Biaxin and right before that

was more cefzil. I have a feeling we are leaning toward tubes in his ears.

Oh joy.

>

> They took 8 vials of blood from each child. They did EMLA first and the

experience was absolutely great. They had child life specialist in there

for distraction and they played with one kid in the hall while I had the

other child's blood drawn so they didn't see each other upset. They were

all so nice and very very helpful. They are testing all the vaccine

responses, b cells, t cells etc. etc. etc. FINALLY!!! He said we may or

may not find it in this first round of testing that the immune system is

very very complex. There were several sydromes that he had in mind esp.

since both kids are affected but he didn't tell me what they were...prob.

best!!

>

> We go back in three weeks and he also wants us to see the allergist there

since our other one was most unhelpful!!! We'll be doing that after we get

some test results back. They also took 6 different sinus and soft tissue

x-rays of both kids. I don't have any results yet. He is supposed to call

me next week with some early results but others will take about 3 weeks to

get back (t-cell b-cell stuff).

>

> Grace Caroline 8/97 (IgA def, sinusitis issues, severe allergies, mild

asthma)

> Caelan 8/99 (IgA def, reflux, asthma, severe allergies, esp. to

foods)

>

March 9, 2001