RE: New with 2 year old intro long....

[Guest guest]

Welcome, We are very new to all this too. I just wanted to wish you both the

best in getting your answers. My son is 19 months old and was just

diagnosed with CVID a few weeks ago. We are going for our second subcutaneous

IVIG on Thursday. Has a long history with asthma, reflux, food

intolerances/allergies and bronchitis every time you blink your eyes it seems

like. He also has recurrent ear and eye infections. goes in for his

second set of ear tubes on the 17th.

I also have Graves Disease. I was pregnant with my second child, Noah, when I

was diagnosed. I was about 5 weeks along and they suggested that we abort him..

We didn't. He was born at 41 weeks not breathing but they resuscitated him and

now he is a happy 5 year old getting ready for kindergarten later this month.

I had a total thyroidectomy done when he was 6 weeks old. Noah is also being

tested for an immune disorder. He is not as bad as his little brother, but he

gets ear infections, sinus infections, sore throats and the occasion eye

infection that he catches from . Noah just got his second set of ear

tubes and his tonsils out in June.

I hope you get an answer today, please update when you can.

Amy, mom to

, 19 months old. CVID, MSPI, GERD, Asthma.. on Neocate, prevacid,

claritin, flovent, xopenex, and IVIG sub Q every two weeks (Carimune NF)

New with 2 year old intro long....

Hi, I am a new member with a two year old son with multiple health

problems. This will be a long post so hang in there. Davin was

conceived just 3 weeks after I received radioactive iodine treatment

for my Grave's disease(autoimmune).

[Guest guest]

In a message dated 8/1/04 9:48:26 PM Pacific Daylight Time,

careshabearz@... writes:

Sorry this is so long, but wanted to fully introduce

my son.

Welcome and thank you for your thoughtful introduction. I just wanted to add

my two cents in, I think you sound like you're in wonderful hands. Have they

mentioned Di Syndrome or the possibility of it?? It combines both the

immune deficiency and cardiac issues--with or without developmental delays.

Sandi, Mom to , age 11. Immune deficiency, Tetrology of Fallot,

Pulmonary valve transplant, Mitral valve stenosis, severe allergies, chronic

ear, nose

and throat infections, asthma and Carnitine deficiency. Suspected Di

Syndrome.

[Guest guest]

Hi, Care,

My Rebekah was 29 months when she was diagnosed with CVID. She's been on

IVIG every 3 weeks for 18 months and it has made a HUGE difference in her

health! But I do so remember how terrified we were in the months before we

got a diagnosis and how hard it was to get someone to take our concerns

seriously. You've come to a good place!

Pam

wife to (17 years)

mother to , 10, Hannah, 8, Rebekah, 4, and Leah, 3

[Guest guest]

In a message dated 8/2/2004 3:23:22 PM Eastern Daylight Time,

sassykay59@... writes:

Welcome and thank you for your thoughtful introduction. I just wanted to

add

my two cents in, I think you sound like you're in wonderful hands. Have

they

mentioned Di Syndrome or the possibility of it?? It combines both the

immune deficiency and cardiac issues--with or without developmental delays.

Hey I was just going to say that! LOL! For info on Di you can go to

_www.vcfsef.org_ (http://www.vcfsef.org) Look for something they call " the

fact sheet " for a list of the possible symptoms of the syndrome, it is also

called 22q11 deletion syndrome and vela-cardio-facial syndrome. There are

something like 180 symptoms or characteristics of the disorder, no one has them

all

but most have something like 30 or so. My son has 52 at last count.

Diane, Mom to Takoda, AKA Kody, Di Syndrome, Hypogammaglobulinemia,

Seizure Disorder, Asthma, GERD, bowel dysfunction, learning disabled, CAPD,

generalized anxiety disorder, and all around really great kid! Also Mom to

Arika

age 16, Kaila age 13 (asthma), and Sami age 10 (dyslexic). Please visit my

website at _www.geocities.com/schmidtzoo/SNAK_

(http://www.geocities.com/schmidtzoo/SNAK)