XLA Community -

[Guest guest]

Hi ,

Thanks so much for your reply and the lead to the XLA

group. I'll certainly join. Amy and I need some

perspective.

When was Calvin diagnosed?

How do you explain to a young child why he needs to be

stuck all the time?

So many questions . . .

Grandmama to Ian (XLA)

My son, Calvin, 4yo, has XLA. There is a group

called XLA_community that you can join in addition to

this one. The moderator is a really great guy who is

in his late 20s with XLA. There are both parents

of XLA boys and grown up XLA men on the list. This

means that you can get a very long term and positive

perspective off of the group.

Sometimes it stays quiet for a while, but then the

activity will increase when a " hot " :-) topic is

brought up.

Fisher

mom of Calvin, 4yo, XLA

____________________________________________________

Start your day with - make it your home page

http://www./r/hs

[Guest guest]

,

The " why " question is a big one. I am not sure I have completely answered that

one myself. I have explained to Calvin that he is missing part of his immune

system, and that he would be very sick all of the time without the Ig.

Calvin takes his needles pretty well----though I think there is an awkward

stage(age 2 to 3) where they are old enough to remember the needles, but not

grown up enough to see past them. That is a rough stage. I was always able to

be very composed at the infusion, for Calvin's sake, but if it didn't go well I

tended to " collapse " emotionally after we got home. I did use a lot of

" incentive " when we went monthly for IVIG. It was a special day for Calvin to

have mom for himself, special activity, eat fun food and be treated like royalty

by the staff.

Now I do SubQ infusions at home. That makes the needle sticks more frequent(5

times every four weeks) but less traumatic. Since we put the Ig under the skin

and don't need to hit a vein it is less stressful. Plus I am the one that gives

him the infusion at home-----for us this is less stressful...

Calvin was first dxed with cyclic neutropenia at age 6 mos. At 18 mos we got

the clinical dx for XLA, and we have not done the genetic testing yet. He has

avoided most of the most serious illnesses, despite the fact that we fumbled

around for a while on his dx.

I think that it is good as they get older that they meet others with similar

circumstances. It will help give them perspective on their own.

I hope this helps

See you over at XLA_Community too.....

Fisher

mom of Calvin, 4yo, XLA

Angels' Roost Farm <eli255@...> wrote:

Hi ,

Thanks so much for your reply and the lead to the XLA

group. I'll certainly join. Amy and I need some

perspective.

When was Calvin diagnosed?

How do you explain to a young child why he needs to be

stuck all the time?

So many questions . . .

Grandmama to Ian (XLA)

---------------------------------

Start your day with - make it your home page