12 XHIM/HIM families have joined !!!!!!!

[Guest guest]

Hi, I don't know what XHIM/HIM means - but I did see that you posted that

your children had gone to duke - I was wondering if you (or anyone else) have

had any experience with Dr. .

It sounds wonderful that there are quite a few of you on the board and that

you are so willing to help other families in need.....

Best of luck and take care

Stefani

(http://www.baby-gaga.com/)

(http://www.baby-gaga.com/)

[Guest guest]

Thank you for the information - I am still fairly new to all of this!

He's an immunologist who studies things like immune host issues and such -

he's supposed to be very good.

We're heading to see him in May.

(http://www.baby-gaga.com/)

(http://www.baby-gaga.com/)

[Guest guest]

Wow! I spent quite a bit of time today searching the archives for

other Hyper IgM families and was excited to find twelve of us!!!!!

I've decided to keep a notebook, so I don't loose contact with all

these others. My desire is to start some kind of support group

eventually. When we were facing BMTs for our 2 boys last year, we

started a non-profit foundation, because friends, family and the

community wanted to donate $ to help us with our medical expenses. We

are still paying our bills, but the end is in sight, and we are

excited about using any $ left over to help other XHIM/HIM families,

and maybe even do fundraisers for other families in the future. Now I

have a whole list of possible families to help!

I'd like to encourage XHIM/HIM familes to please take the time to list

themselves in the database( " complete phonebook " )on the webpage.

I wasn't comfortable leaving certain info, so don't feel any pressure

to do so either. It'd just be easier to find each other if you at

least leave the PID your child has, your name and some way to be

contacted. It sure would have saved me time today!

Wishing the best to all my new XHIM/HIM friends,

~ Tatem

Mom of Kaitlyn,13 (healthy donor for brothers' double BMT)

,10 (XHIM, 1 yr. post BMT @ Duke)

, 6 (XHIM, 1 yr. post BMT @ Duke)

www.caringbridge.org/va/tatem

[Guest guest]

Hi, Stefani~

XHIM stands for X-linked Hyper IgM, which is a problem w/ CD 40

ligand, a protein that helps the T-cells communicate w/ the

B-cells...thus affecting anti-body production, except IgM...which I'm

not really sure why that particular antibody is not affected! There is

usually neutropenia (too few neutrophils-a type of WBC) also involved.

Standard treatment is IVIG/SCIV, GCSF and Bactrim, or BMT.

I'm sorry, I don't know anything about Dr. . What kind of doctor

is he?

~ Tatem

Mom of Kaitlyn,13 (healthy donor for brothers' double BMT)

,10 (XHIM, 1 yr. post BMT @ Duke)

, 6 (XHIM, 1 yr. post BMT @ Duke)

www.caringbridge.org/va/tatem

>

> Hi, I don't know what XHIM/HIM means - but I did see that you posted

that

> your children had gone to duke - I was wondering if you (or anyone

else) have

> had any experience with Dr. .

> It sounds wonderful that there are quite a few of you on the board

and that

> you are so willing to help other families in need.....

> Best of luck and take care

> Stefani

>

> (http://www.baby-gaga.com/)

>

> (http://www.baby-gaga.com/)

>

>

>

>

>

>

[Guest guest]

,

So great to hear from you....sorry my post was so short.....Since

is better, I'm working full time now.....but it's so hard to juggle

things....

igh, my 6yo was dx with a cognitive disorder, now maybe sensory

processing and central auditory processing. CPT test was positive for

ADHD.....school pulled special ed...it's been a fight....

We just returned from MPLS to see a specialist who wasn't real

helpful....so will see what happens in the next few days...Her gross

motor skills are really dropping as well as not making great progress

with her writing...

I have basically been in the delete mode lately with the emails, plus my

new job is sitting " tied to a computer " all day, auditing medical

bills.....I am really good at catching errors.....Ha HA..

When reading this post, the s/s of xhigm sound so much like .....I

still worry....Our dx isn't real concrete right now, but at least we

started SCIG and he is doing GREAT...which to me, says there was

something going on.

Your article in the paper brought tears to my eyes......It is so

wonderful to see them playing and be able to Maybe start letting the

" guard down " , tho I doubt that that is easy for you guys.

You are an inspiration to me....

Thanks.

Re: 12 XHIM/HIM families have joined !!!!!!!

Hi, Stefani~

XHIM stands for X-linked Hyper IgM, which is a problem w/ CD 40 ligand,

a protein that helps the T-cells communicate w/ the B-cells...thus

affecting anti-body production, except IgM...which I'm not really sure

why that particular antibody is not affected! There is usually

neutropenia (too few neutrophils-a type of WBC) also involved. Standard

treatment is IVIG/SCIV, GCSF and Bactrim, or BMT.

I'm sorry, I don't know anything about Dr. . What kind of doctor is

he?

~ Tatem

Mom of Kaitlyn,13 (healthy donor for brothers' double BMT)

,10 (XHIM, 1 yr. post BMT @ Duke)

, 6 (XHIM, 1 yr. post BMT @ Duke)

www.caringbridge.org/va/tatem

>

> Hi, I don't know what XHIM/HIM means - but I did see that you posted

that

> your children had gone to duke - I was wondering if you (or anyone

else) have

> had any experience with Dr. .

> It sounds wonderful that there are quite a few of you on the board

and that

> you are so willing to help other families in need.....

> Best of luck and take care

> Stefani

>

> (http://www.baby-gaga.com/)

>

> (http://www.baby-gaga.com/)

>

>

>

>

>

>