Hello, I'm new here...

[Guest guest]

Hello all, My name is Toni and I am a 28 year old SAHM to 2 great kids. My

daughter Sira is 6 years old and in grade 1, she is very active, in Karate

and Dance and is a huge Tinkerbell fan.Sira, is pretty healthy, she does

have asthma, but it really only affects her when she is sick.She is a toe

walker and has shrunk the tendons in her legs and will be having surgery on

them in the next 6 months or so, and then in casts for a few weeks. My son

Torin is 3 years old and a very happy active little guy, hes a huge bob the

builder fan. Torin was diagnosed with selective IgA deficiency last month. I

had never heard of it before, so when the doctor called and said this is

what he has, and it means he is gonna get sick more and be harder to treat,

i panicked! Searched the Internet for some info and I have to say it scared

me silly!! So we went to his GP for some more info. She didn't know his

levels so didn't know how bad it was but she did say that playschool was not

a good idea, too many germy kids! I'd really like to talk to some other

people who have this or who's kids have it, so I can understand how this is

going to change Torin's and our family's lives. He has already been so sick

the last 2 years, with ear infections, pink eye, flu, asthma ect ect. He had

pneumonia for about 7 weeks over Christmas and then got it again in

Feb/March for another 6 weeks! So far winter seems to be the worst time for

him. We had a sweat test on June 14th to rule out Cystic fibrosis, which

they didn't think he had but wanted to make sure, luckily his results were

normal Yesterday we went back to the specialist and got his levels for the

IgA deficiency, normal is 0.57 to two point something and Torin has less

then 0.07 which the doctor said is basically non existent. He confirmed

everything I had read and said yes those diseases do happen but the biggest

thing is stomach problems, I can't remember right now what it was called but

it causes constant diarrhea which Torin has had for a few weeks now so lucky

me gets to bring in a stool sample (fun!). We have to go back in 3 months

for another blood test to confirm the results, but the Doctor said with

Torin's levels being so low that it is pretty much just a formality. Also if

Torin's ears have not cleared up before we go back then he will have to have

tubes put in. I said that with the last ear infection and Torin not telling

us until it was ready to burst really scared me and he said its because he

basically has always got an ear infection and now the pain is just the norm

for him .

As for day to day life the Doctor said I just have to decide how small of a

bubble I want Torin to be in and how much of life I want to introduce into

his bubble, that everything we let into the bubble is a possibility of

introducing germs to him (those were the doctors exact words). He said I

need to throw out the idea that antibiotics are bad because in Torin's case

they are all that will help him, and if he even gets a sniffle I can't just

say we'll see how he is tomorrow because he WON'T be any better tomorrow he

will just be worse, so I have to take him right to the doctor for the

strongest antibiotics possible and everything has to be treated that way. I

asked what happens if Torin builds up an immunity to them but he said that's

not gonna happen, they are always making new and better ones. I also asked

about blood transfusions, because I read that he can go into anaphylactic

shock and he said yes he can, but as long as the doctors know he is IgA

deficient they won't give him one. I asked about monthly injections as I had

read that this helps but he said not with IgA, that there is really nothing

we can do except treat him when he gets sick.

Ok sorry this is so long and rambly but I am still trying to absorb all of

this and just wrote it as I remembered it. Now i need to figure out how

small of a bubble I can keep him while still letting him have a normal life.

No playschool this year, but we will see how life goes and maybe put him in

when he is 4.

~*~Toni~*~

Wife to Vaughn, Mommy to Sira(6) and Torin(3)

Visit our family webpage!

http://www.angelfire.com/ab3/lasells

[Guest guest]

-------Original Message-------

From: pamannmoran@... She went on to tell me that there are

only 1 or 2 labs in the country who run the tests detailed enough to

determine

if your body is completely absent of IGA

Thanks for the info pam, I'm in Canada, so those labs probably won't help me

anyways LOL but it is gonna be so nice be able to talk to other parents who

actually KNOW what IgA is! and have been through everything I have gone

threw!

Toni

[Guest guest]

Wenoka,

" It almost sounds like your doc is preparing you for a worst case scenario

here, which may or may NOT be your child's case. "

Wow I really hope so, I have to keep telling myself that he just might start

developing IgA on his own, and that all these thing may happen but probably

NOT!

" He has not had digestive problems at all since he was a toddler. He

tended to have loose, yucky weird green colored stools that smelled

particularly foul until he was about 3 yrs old. "

This describes Torin's BM's quites well, we had to bring in a stool sample

today(that was real fun! NOT!) so we'll hear back from the doctor in 3 or 4

days. With Torin he hardly eats at all but will have anywhere from 3 to 10

loose BM's a day!

" We have never kept him secluded (beyond what being a stay-at-home mom who

lives in the country does). "

I am so happy to hear this! I am a stay at home mom too,and Torin has only 2

friends, both mothers know about Torin and won't bring their kids over if

they are sick. But since my daughter started school she has brought

everything home to Torin and he gets so sick! I was dreading him going to

school and being even worse off. We are just gonna take this next year to

see how being IgA deficient effects Torin, if the year goes well then i will

put him in playschool in 2006 and then kindergarden the next year. My family

doctor told me I might want to think about home schooling him, and i have to

say that really scares me! I don't know the first thing about teaching!

" Also, call the IDF foundation and they will send you information packets

for the family and will provide your physician with a number only for

doctors of PID patients "

That would be great but I am in canada and so they probably won't send it

here. I have been looking for something like it in canada but no luck so far

Thank you so much for the advice and help Wenoka, I can already tell that

this list is going to be a great place for comfort and information!

Toni

[Guest guest]

,

Thank you so much for repling, it is really nice to " see " families living

normal lifes with this, I have been a mess worring about him. But I am

starting to feel better hearing from other parents who have been through

this for a few years now, rather then from my doctor, who seems to like to

scare me!

Toni

[Guest guest]

The up side is that IgA kids don't have to get infusions, but the down side is

that they don't have any real preventative treatment. But has lived a

pretty normal life. She enters Kindergarten in August, and we'll see what life

holds for us then (my son was sick SO many times in Kindergarten, and as far as

we know he has no deficiencies or illnesses).

, Mom to , 5, IgA Deficient, Asthma, Chronic Ear/Sinus Infections and

Connor, 6

,

Thank you so much for repling, it is really nice to " see " families living

normal lifes with this, I have been a mess worring about him. But I am

starting to feel better hearing from other parents who have been through

this for a few years now, rather then from my doctor, who seems to like to

scare me!

Toni

[

[Guest guest]

In a message dated 6/22/2005 7:12:31 PM Central Standard Time,

tonilasell@... writes:

> I have been a mess worring about him. But I am

> starting to feel better hearing from other parents who have been through

> this for a few years now, rather then from my doctor, who seems to like to

> scare me!

>

Hi Toni, me again.

OH, I know what you mean about the fear. nearly died from meningitis

after an ear infection at 5-1/2 months old. It took me YEARS before I didn't

panic at every fever. And FORGET about it if she had an ear infection!!! We

didn't know how vulnerable she was or wasn't, so the ID/Immuno wanted her to

have

ER, labs, IV meds with every fever of 102 rectal. Well, you know how frequently

and how sick PID pumpkins get! So here I was, having to freak over every

fever, on doctors' orders!! That can become a habit (the freak out) quick!!!! I

will never forget those hours of naked fear, my stomach churning, worrying that

every infection was going to become deadly.

Then many of her #s came up, and over time I began to see patterns of how she

acts with certain types of infections, what her labs look like with certain

infections, and finally after YEARS of that, I now know that every bacteria

that crops up in her isn't necessarily going to kill her. Phew!!! What a relief.

(but you still have to be on your guard!)

Also, you get very good at spotting the illnesses even before docs can see

anything clinical, and after awhile you realize that " mommy's instinct " probably

isn't going to allow anything to get past you!

And with the illnesses come a lot of disappointments -- but we've come to a

pretty calm way of dealing with it all. When illness comes and we have to miss

a special event, knows we won't get to go and accepts it (it's happened

alot!). But we always make it special anyway, by renting a favorite movie or

picking up Mc's or getting a new coloring book or special treat, so that

takes the sting out of it. It's not that normal, but it's normal for us and we

handle it. After awhile you come to your own personal version of " normal " and

sometimes the fear is part of that, unfortunately. But it does get better in

time, I promise!

(mom to , age 6, dairy intolerant-related GERD -- currently has

polysaccharide antibody def, previously had transient IgG, IgA, t-cell & other

defs... and also to Kate, age 2-1/2, more dairy intolerant but very healthy!)