Hello everybody!

[Guest guest]

Hi, ,

We learned the hard way about being a better advocate for our child, too, so

don't feel bad. Our Rebekah was diagnosed at 29 months. Honestly, we were

very happy to have a diagnosis! Finally, there was a reason for all of the

illnesses and odd infections.

Then, the reality of treatment options hit. No one like to see their child

sick and no one likes to see their child stuck with needles.

Fast forward to today, 3.5 years later: CVID is just part of our life.

Okay, not our favorite part, but it is just a fact of life, like diabetes.

Rebekah receives 12.5 grams of antibodies every 21 days through a port. We

homeschool (by choice, not necessity) so her exposure is limited and she is

in very good health. Her energy is not great, but her infection level is

very, very low.

At times, when she has been exposed to germs or during a tough flu year, we

worry more about her than we might a child who has a complete immune system.

I don't have a lot of secrets for how to adjust. We prayed a lot and cried a

lot at first; we worry a lot, at times, still. But, the treatment regimen

becomes a part of life and, after the side effects are conquered and the

infection rate drops, the child gets healthier. The treatment is a small

price to pay for health!

I'm sorry you are on this journey; it's very scary and dark at the

beginning. And you feel paranoid worry about germs that you can't see.

Then, you start imagining germs everywhere.

Just do your best to keep your child exposed to as little as possible, but

try to accept that some exposure will happen. Carry hand sanitizer around

with you and maybe even sanitizing wipes to wipe down tables, chair arms,

shopping cart handles, etc.

Everyone here knows where you are in your journey; we're all willing to

listen to your venting, when you need an ear.

Pam

Mom to 4

Rebekah, 6, CVID and ??

Hello everybody! I wanted to take a moment to introduce myself, and

ask for any advice you can share. My middle son, Robbie, is 2 years

old, and has had a long list of medical issues and hospitalizations

in his very young life. He has an undiagnosable genetic condition

(they know he has one, but don't know what to call it), left

ventricular hypertrophy, developmental delay, many breathing issues

due to being on a vent as an infant, the list goes on and on....

After all these hospitalizations, and freaky infections that would

start with being exposed to a runny nose and end up being a 7 week

ordeal for us, I insisted that he see an immunologist, and we had our

first appointment this past friday. The immunologist said, " the

infections are suspicious, and you should have been here two years

ago when the infections started. I can't believe your pediatrician

didn't want to send you here. "

[Guest guest]

In a message dated 10/27/2005 8:51:14 AM Central Standard Time,

dejvanatta@... writes:

> I'm not supposed to expose him to

> anything until we get results(I've got two other kids), and am

> housebound until further notice

This seems pretty standard -- we were housebound, on full isolation for

roughly two months when started the first round of testing. I was lucky to

have a MIL living nearby who could drop off groceries and even switch out with

me so I could get out of the house a couple times.

We had never worn shoes in the house (white carpet), and kept that up, plus

had a bottle of Purell by the front door and everybody had liberal squirts when

they walked in the front door, before they even touched the knob to close the

door. The only person (other than DH) to come in at all was MIL, and only if

she was perfectly well. After we were not housebound anymore, we cleaned off

carts and swings etc., avoided sick or coughing people, avoided play places,

didn't let touch anything in public, used Purell ourselves whenever we

touched anything in public. This routine lasted about a year and wasn't great

fun, but boy, DH, and I were the healthiest we've ever been. Nobody had

even a cold! For a year! But it wasn't a normal life, you know?

Normally you wouldn't have to keep that up so long. Either your PID qualifies

you for IVIG or SCIG, or you have good enough #s that you don't have to live

in a bubble. In our case, our immuno wanted on IVIG but we wanted to

wait until she was two and was re-tested -- I spent that time researching IVIG,

joining this group, learning all I could, and finally deciding IVIG was the way

to go -- the way to a healthier life for . Since we were refusing IVIG,

we were told to " keep her protected " . Then she was re-tested at age 2 and her

IgG had come up and the immuno yanked away the possibility of IVIG. Told us to

loosen her restrictions because she had outgrown some of her deficits. And

THAT is when she started getting sick more often.

Her original dx was at age one, it changed every time we re-tested, at age

1-1/2, age 2, age 3. It's been stagnant since age three.

We've adjusted to this lifestyle, come to terms with the PID. It takes time.

The waiting for the test results, especially the first couple rounds, was the

worst. Stay with this group -- the knowledge here shortcuts the learning

process tremendously. If the dx is unsure or ever-changing, that's hard too. But

eventually you do adjust, you just have to!

The good news is now you are on the road to something better. You are getting

help for your son, somebody is looking into it, somebody is there to help.

Sounds like you might want to jettison your ped, but the immuno seems to be

concerned and caring.

You're on the right track! It just has to get better from here, right?!!

Welcome.

(mom to , age 6-1/2, dairy intolerant-related GERD -- currently

has polysaccharide antibody def, previously had transient IgG, IgA, t-cell &

other defs... and also to Kate, age 3!, more dairy intolerant but very healthy!)

[Guest guest]

Hello,

My name is Boris and I am new to the group. I have been lurking for a

couple of weeks, and this is my first post.

I live in London, UK and I am in love with essential oils. I adore

everything organic, natural and cruelty-free. I got into aromatherapy

after a friend introduced me to the magic of pure,fragrant plant

essences. I have been hooked since. I have been making my own

bodycare products for a while - lotions, shampoos, etc, and have

tried making perfumes as well, but I am aware I need so much more

practice, training and inspiration - that's were you all come in!

My favourite essential oils are: bergamot, litsea, neroli,

nerolina...and some new additions - blue cypress, ginger lily,

flouve, yuzu, agarwood and strawberry gum. Heck, I love them all!

I will also try to post some news from the world of fragrance and

perfumes as they happen, as I follow some of those.

Thanks for letting me in!

Best regard,

Boris

[Guest guest]

Hello everyone,

My name is Cherie - I am new to the group and basically just a lurker at

this point. I took a very comprehensive aromatherapy program here in

Vancouver, BC and am something of a novice aromatherapist who is now

interested in natural perfumery.

My experience has been primarily with essential oils, so I am just

experimenting with some concretes now, mostly with jojoba (though

discovering these do not always dissolve in jojoba).

As i am just beginning, I am wondering if anyone might be able to recommend

a good book to become more aquainted with terminology, etc. I am

considering a distance course through Mandy Aftel's company, but will have

to wait awhile for that.

One more thing! I am wondering if you folks blend with alcohol bases and if

so, would it be ethanol or grape alcohol, and if so, where do you source

these?

Thanks for your time.

Cherie Gibson