Welcome Heike!

[Guest guest]

Welcome to the group! My son, Cole, age 3, also has Selective IgA

def. We are only about 9 months into his diagnosis and what a

journey it has been! Cole exhibited the same symptoms as Noah. My

pediatrician (while I do love her) just didn't seem to be too

concerned about the repeated infections he experienced from 3 months

on, even after a set of ear tubes. After chronic infections (sinus,

ear, URI)I went around the pediatrician and consulted his ENT. He

is the one who originally questioned a def and ordered the original

set of labwork last fall. In retrospect, I really think the ped

should've more on top of the clinical picture and saw the downward

spiral my son was in.

Anyways, we are seeing an excellent immuno and I LOVE my ENT for

taking the time to really evauate Cole and get the ball rolling in

the right direction to better his health. At this time he receives

antibiotics daily to prevent infection. He has to take allergy

meds, nasal spray and he also is taking Prevacid for the gut issues

he has had since birth. We are scheduled to see an excellent ped GI

next week to evaluate that particular end of the clinical picture.

I can sympathize with your journey. It gives me hope though, to

hear that Noah is 8 and is having a fairly normal life. That is all

I want for my son!

I just decided within the past month that I need to start getting

copies of his medical records and keep track of them at home. Do

you get xerox copies at each visit before you leave or do you have

to request them later?

In the meantime, I feel as you did that my ped is tiring of my

vigilance in my son's health. But it isn't just her. Many of my

family members and friends think I've become obsessed as well.

Maybe I am, but I do know that I love my children dearly and will

continue to " obsess " about them until the day God calls me home.

After all, isn't that our job as parents?

Rogena (Mom to 4 boys, including Cole -Partial Selective IgA Def,

GERD, possible Celiac)

>

> It is such a relief to find this site! While I would never wish

any

> child to go through all these conditions involve, it is so

> comforting to find others going through the same. My son, Noah is

8

> years old and was diagnosed 3 years ago with Selective IgA. He

> basically had been " sick " since birth.(RSV at 2 weeks,chronic ear

> infections,etc.)It was only after an ear infection that wouldn't

heal

> (2 years) that sent us to an ENT who ordered a culture of the

> drainage from his ear, which turned out to be MRSA that sent us to

> an Infectious Disease doctor who ordered TONS of blood work that

we

> found out about his IgA. I have to admit that I no longer have

much

> confidence in doctors, I fired Noahs Peditrician who kept treating

> his ear infection with the same antibiotics and never cultured the

> drainage. After so many visits for the same complaint, both he and

> his staff began treating me like I was just overacting. Has anyone

> had this problem? With Noah now having so many specialists, I have

a

> xerox of each visit and test results made and keep them in a

binder

> that we take to all visits.(I highly recommend this) At one point,

I

> started taking a small tape recorder to visits. When you are

having

> all this info thrown at you, it all starts to run together and

then

> I could go back and make sure that I was understanding all the

> information.We also keep a date book and I document any health

> issues,it is great for reference. Noah has been doing better

lately.

> He is a great active boy. He is starting to have some issues with

> not wanting to be " different " from his peers so he will not always

> be honest when he is not feeling well. He misses more school than

> the other kids but his teacher is understanding(wish I could say

the

> same of the administration)I schedule a time at the beginning of

the

> year to meet with the teacher and explain Noahs condition(I

download

> info off the net for them to read) that seems to help. That is a

> little bit about us and I hope that this post finds you all doing

> well.

> Heike Ramsey

> Indiana

>