Update on the boys

[Guest guest]

the boys saw the ENT yesterday and there is nothing he can do for them, so the

HEM is scheduling their first IVIG infusion for next week. We'll be admitted to

short stay for it. I'm nervous... haven't told the boys yet. I'm sure ph

will be thrilled. Of course their records from the ped had not arrived at his

office--- GRRRrrrr...I called on Friday and was in town and told them I would

pick up their chart notes (I have all the other records) and they wouldn;t let

me--- they were going to be SURE to have them faxed to Dr. K by the time we went

to our appt! ...of course you KNOW how that always works out.

Then we get in and the ENT is listening to me...and of course ph JUST

finished antibiotics for a sinus infection and he says, " Am I just catching them

on a good day or something? " Like I've just made up the fact they've had a

BAZILLION infections! GRRRrrrrrr the ped's chart notes would have been

nice.... so I had to explain that he just finished Augmentin 600, so I would

HOPE his sinuses were clear...and the immuno changed his meds 2 weeks ago, so

MAYBE the new med is helping more.....

he says he can remove the adenoids, but that even in *normal* children thee is

only a slim chance that it would help...so why do they even bother to do that in

NORMAL children (BTW-- I think my children are normal-- call me Cleopatra, Queen

of Denial) The HEMs nurse was there and she tells him about the boys and

all..... the ENT keeps saying there really isn't anything he could do to

help...the only thing he could offer that might help would be to culture their

sinuses the next time they are under for a procedure...so during the next bone

marrow biopsy, he'll be doing that...but we are not going to schedule time for

them to go under just for the culture.

So, since the ped and immuno want IVIG for the boys, the HEMS nurse talked to

the HEM and they are scheduling it for next week-- their first infusion. Of

course we've got the immuno and the ped who are POSITIVE the IVIG is the answer

to our prayers and the HEM who isn;t sure it will work, but is going ahead with

the trial..and says if it doesn;t work, then we'll regroup and see what we can

do.

I'm nervous.. we really like all of their docs, but I think I would prefer all

of them thinking the IVIG would work...I know the HEM would not order it if she

did not think there was a good chance it would work.... but, still..... makes

me wonder if we are doing the right thing by listening to the other two docs, ya

know? Are we supposed to go by Majority rule? Do they vote on this stuff? I

keep reminding myself that medicine is an art, not a science ~gee~ Okay, so

there's science involved.... but there's a lot of art.

Of course the HEM had sent us to the immuno 2 years ago to see about IVIG for

... of course the immuno said he had low immunoglobulins, but she did not

feel he needed IVIG at the time.... the HEM had told us back then that she

thought it might help..... but she wanted to see what the immuno said... So I am

wondering what has changed that she doesn't think it will help? She's

mentioned that she feels since their infections seem to be localized URIs, sinus

and various viral stuff, that the IVIG may not help. Know anything about

that?

We see Dr. G on Monday. Maybe he'll reassure me that this is the right thing to

do. We're scheduling it, but I am SOOOoooo nervous...wondering if we're making

the right choice... how do we know if it is the right choice? I guess we

don;t until we see the results....

UGH

Pattie

[Guest guest]

{{{HUGS}}} Pattie. Been there, thought that! We are coming up on our 1st

anniversary of a diagnosis. Maybe we'll throw a party to commemorate the

occasion!

I think I turned myself inside out many times over whether IVIG was right or

not. The HEM said it was. The immuno said it wasn't, but maybe it was, but

probably not, but definitely! Seriously! The immuno flipped around several

times on whether IVIG was the right treatment. We finally made the call

ourselves. In my heart, I knew that Rebekah was somewhat better on IVIG

than not on it after just two treatments.

Today was infusion #10 (I think). It was the best one yet. Rebekah

tolerated the procedure the best, had no headaches, and the nurse didn't

goof anything up! Rebekah has been off antibiotics for 10 days now. This

is the first period that she has been off antibiotics since early May. I

wouldn't say that she looks great, but she looks so much better than last

year!

This was her first healthy Christmas. When I went out to the closet in the

garage to get the Christmas gifts I hide away all year for the kids, there

were Rebekah's gifts from last Christmas all wrapped up. She was so sick

last year that we never opened them at all! This year she was leaping

around and squealing over her gifts! What a tremendous difference!

Hope it helps to hear our view of IVIG and our story. I'll be praying for

you and your boys!

Pam

wife to (15 years)

mother to , 9, Hannah, 6, Rebekah, 3, and Leah, 1

Update on the boys

the boys saw the ENT yesterday and there is nothing he can do for them, so

the HEM is scheduling their first IVIG infusion for next week. We'll be

admitted to short stay for it. I'm nervous... haven't told the boys yet.

I'm sure ph will be thrilled. Of course their records from the ped had

not arrived at his office--- GRRRrrrr...I called on Friday and was in town

and told them I would pick up their chart notes (I have all the other

records) and they wouldn;t let me--- they were going to be SURE to have them

faxed to Dr. K by the time we went to our appt! ...of course you KNOW how

that always works out.

We see Dr. G on Monday. Maybe he'll reassure me that this is the right

thing to do. We're scheduling it, but I am SOOOoooo nervous...wondering if

we're making the right choice... how do we know if it is the right choice?

I guess we don;t until we see the results....

UGH

Pattie

[Guest guest]

Thank you Pam:)

Pattie