New members - Sandy/Riley - Selective Antibody Deficiency

[Guest guest]

Sandy - welcome to the list. Try going to

http://www.primaryimmune.org/forums/default.asp?b=1 this is an active forum

at the Immune Deficiency Foundation website (www.primaryimmune.org). you

might also consider calling the IDF at 800-296-4433 and asking for their

Patient/Family Handbook and registering with them for future family

conferences and PID literature. I hope Riley did well with her first

infusion.

Ursula Holleman

mom to (10 yrs old) and Macey (8 yr. old with CVID, Diabetes

Insipidus, colonic inertia)

http://members.cox.net/maceyh

Immune Deficiency Foundation - Peer Contact for GA

http://www.primaryimmune.org

/

Re: File - emaillist.txt

> Hello again,

>

> I am hoping that I can provide enough information to subscribe to the

> emaillist.

>

> My daughter is 12 years old. Her name is Riley. My name is Sandy Skapik.

> We live in southeastern Pennsylvania. My daughter was recently diagnosed

> with Selective Antibody Deficiency, specifically she made no titers for

> pneumococcal. She was tested after 3 years of practically constant

illness,

> 4 pneumonias, countless ear and sinus infections and very difficult to

> control asthma.

>

> She began monthly IVIG therapy last month. She will have second IVIG

> infusion on 11/18 and she will also have tubes placed in her ears and

> adenoids removed.

>

> I have not been able to find an active online support group/message board

> relative to immunodeficiencies. I am hoping that this list is active and

> that I can subscribe.

>

> Please let me know if there are any further questions. Thanks.

>

> Sandy Skapik

>

[Guest guest]

Hi, Sandy,

I'm Pam. My dd, Rebekah, was diagnosed at age 2. We have just passed our

one-year anniversary of routine IVIG treatment and what a difference a year

makes. This is a great list; you'll learn a lot and enjoy meeting other

mom's who understand what you are going through! How did the first

treatment go?

Pam

wife to (16 years)

mother to , 10, Hannah, 7, Rebekah, 4, and Leah, 2

Rebekah has CVID and maybe some other stuff

[Guest guest]

> Hi, Sandy,

>

How did the first

> treatment go?

Hi,

Riley did very well for her first IVIG infusion! She did get a

headache afterward, so I think they will probably slow down the

infusion next time. We are cautiously optimistic that she will do

well with IVIG!!!

I am very glad to have found this group.

I am so thankful we now at least know WHY she has been sick over and

over and over again, since she's been 1 year old! I am so thankful we

finally found answers with this Allergist/Immunologist, who took a

look at her infection history and tested/challenged her immune system.

We have been struggling to find answers for her for 3 years, but her

asthma has been so difficult to control - it overshadowed the fact

that infections were the precursors to the asthma going over the top.

Sandy

married to Andy (13.5 years)

mom to:

Riley (age 12 - selective antibody deficiency and asthma)

(age 10.5 - asthma)

Evan (age 9 - asthma)

[Guest guest]

Sandy - Is Riley receiving any premedication before the infusion starts?

Benadryl? Steroids? We've noticed that they

help Macey with reactions during her infusion as well as warding off migraines

afterwards. It's even as specific as one

type of steroids working better than another. There are many variables of an

infusion that can be adjusted to prevent

or reduce reactions.

Ursula Holleman

mom to (10 yrs old) and Macey (8 yr. old with CVID, Diabetes Insipidus,

colonic inertia)

http://members.cox.net/maceyh

Immune Deficiency Foundation - Peer Contact for GA

http://www.primaryimmune.org

/

[Guest guest]

> Sandy - Is Riley receiving any premedication before the infusion

starts? Benadryl? Steroids? We've noticed that they

> help Macey with reactions during her infusion as well as warding off

migraines afterwards. It's even as specific as one

> type of steroids working better than another. There are many

variables of an infusion that can be adjusted to prevent

> or reduce reactions.

>

> Ursula Holleman

Hi,

Riley didn't receive any premedications at her first infusion. But I

certainly will inquire - because it really was a significant headache

and lasted about 2-1/2 days. The doctor did say when we were leaving

that they wanted to know if she got a headache so I did call his

office to let the message. Hopefully, there will be a plan in place -

if not, I'm going to request a plan regarding the headaches.

Sandy Skapik

Mom to Riley (age 12, seletive antibody deficiency and asthma)