Let me introduce Myself

[Guest guest]

Hi !

I'm so glad you joined the group. I didn't realize how rough of a start

your boys had! Your family is such an inspiration to so many people! I

think there are a couple of families here with XHIM, but I don't think they

have had BMT. Hopefully you'll here from them.

Take care,

Mom to Conner (11, Asperger's, mild CP, partial seizures, asthma, GERD,

Hashimoto's disease, hypogammaglobulinemia, complement deficiency, antibody

deficiency, NK cell defect, and resolved adrenal insufficiency),

Hayden (11, PDD-NOS, IBS and moderate hearing loss/aided),

Evan (11, asthma and mild hearing loss/unaided),

and Kelsey - (9 going on 19!)

Please visit us at www.caringbridge.org/in/connersmith

>From: mptatem@...

>Reply-

>

>Subject: Let me introduce myself

>Date: Fri, 9 Dec 2005 21:25:21 -0500

>

>Hello, All!

>I am SO excited about participating in this group. I wish I could've

>known about you for YEARS now, since for 10 years we have been dealing

>with a PID called XHIM (X-linked Hyper IgM). Two of my three children

>were diagnosed with this syndrome, both are boys. My daughter has been

>tested to see if she is a carrier, like myself, and thankfully she IS

>NOT! I had no idea I was, until all this started when my oldest son came

>down with PCP (pneumocystis carinii pneumonia) at 5 months old. He was

>hospitalized almost a month, during which some of the time he was on a

>ventilator, after a scary 15 minute " code " , when we didn't think he was

>going to be revived. Now we tease him that he's had a 15 minute preview

>of heaven! Like many of you (I've gathered from reading some of your

>e-mails), we went the next 5 years without a diagnosis....just treating

>him generally for an immune deficiency with monthly IVIG, GCSF(Neupogen)

>for low WBC and prophylactic Bactrim. It wasn't until my second son was

>born, with the same weird bloodwork, that they were diagnosed with XHIM

>at Duke. It is rare, and I'm hoping to find more XHIM Moms here!

>Fortunately, our daughter was found to be a match for BOTH boys, and so

>we did a double BMT this past April, also at Duke. I saw tonight that

> also has gone through a BMT at Duke. (Nice to meet you, ! I'd

>love to hear more about your experience.)We spent 5 months in N.C., and

>have been home 3 months now. It's been difficult, because we have to be

>VERY careful still, until at least their 1 year anniversary next April,

>because it takes a LONG time to recover from the BMT. Their immune

>function is still being evaluated...monitored at least once per week. I

>was hoping to connect with other BMT Moms, because it all can be so

>overwhelming, especially here at the holidays, for some reason. Besides

>, are there any other PID/ BMT Moms out there?

>Thanks for listening,

>

[Guest guest]

Welcome to the group ! This group is a wonderful resource of support and

information. they have helped our family so much.

Reising

Indianapolis, Indiana

Mom of (3yrs) Low IgG, asthma, peanut allergy, dog allergy, cronic

sinusitus, eczema

Mom of (4yrs) Healthy

Mom of (7 yrs) Asthma, Dust Mite allergy, eczema

Let me introduce myself

Hello, All!

I am SO excited about participating in this group. I wish I could've

known about you for YEARS now, since for 10 years we have been dealing

with a PID called XHIM (X-linked Hyper IgM). Two of my three children

were diagnosed with this syndrome, both are boys. My daughter has been

tested to see if she is a carrier, like myself, and thankfully she IS

NOT! I had no idea I was, until all this started when my oldest son came

down with PCP (pneumocystis carinii pneumonia) at 5 months old. He was

hospitalized almost a month, during which some of the time he was on a

ventilator, after a scary 15 minute " code " , when we didn't think he was

going to be revived. Now we tease him that he's had a 15 minute preview

of heaven! Like many of you (I've gathered from reading some of your

e-mails), we went the next 5 years without a diagnosis....just treating

him generally for an immune deficiency with monthly IVIG, GCSF(Neupogen)

for low WBC and prophylactic Bactrim. It wasn't until my second son was

born, with the same weird bloodwork, that they were diagnosed with XHIM

at Duke. It is rare, and I'm hoping to find more XHIM Moms here!

Fortunately, our daughter was found to be a match for BOTH boys, and so

we did a double BMT this past April, also at Duke. I saw tonight that

also has gone through a BMT at Duke. (Nice to meet you, ! I'd

love to hear more about your experience.)We spent 5 months in N.C., and

have been home 3 months now. It's been difficult, because we have to be

VERY careful still, until at least their 1 year anniversary next April,

because it takes a LONG time to recover from the BMT. Their immune

function is still being evaluated...monitored at least once per week. I

was hoping to connect with other BMT Moms, because it all can be so

overwhelming, especially here at the holidays, for some reason. Besides

, are there any other PID/ BMT Moms out there?

Thanks for listening,

This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the sole

responsibility of the poster and should not be taken as professional advice.

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[Guest guest]

Hello C.A.S.T Group,

I can tell that this group is going to be of great resource and support for me

and my Little Miss Magic. My name is and I have a 2.6 yrs old daughter,

Kyra (Keer-ah). She was born in September 2008. To make a long story short at 2

weeks she was diagnosed with 22q11 deletion; AKA Digeorge syndrome. At 4 Months

she started PT for torticollis, at 6 months she had open heart surgery to

correct her tetralogy of fallot and repair a valve, at 18 Months she had tubes

put in her ears and this past week she was diagnosed with Scoliosis. Her x-rays

showed a 32 degree curve. When the doctor looked back at an x-ray taken a year

ago, for her heart, he said the curve was minimal then. Due to her syndrome,

she is developmentally delayed and thus walked at 21 months. Our next step is

getting her MRI scheduled and the doctor talked about bracing her. She continues

to receive PT, OT and Speech and attends an intervention preschool 2x a week for

3 hours. Like many of you, I hit the internet looking for information and what

will be best for my daughter. We live in the San Diego, CA area and I have seen

Loma University come up as possible Casting. Has anyone had any

experience with LLU? Also. With the casting method, do the kids wear a brace

afterwards and if so for how long? I am sure I will have more questions but I

am just beginning to understand what is ahead and trying to stay focused.

Many Thanks for your time!