RE: I lived through my first IVIG

[Guest guest]

I hope it doesn't seem odd for me to respond to your e-mail. I am new to

and haven't communicated with anyone yet, although I did post once. I saw your

post in my mailbox this a.m. and wanted to wish you the best.

Talk about empathy for your daughters! Congratulationa on your milestone.

I cannot believe they put you in a storage closet, however! Where do you

live/is you immunologist? At my daughter's, they have a room just for her with

a sofa draped with clean sheets, blankets, pillows, etc.

Just last week the neurologist suggested I be tested. While I am doubtful, I

will discuss it with the immunologist next visit. How did you happen to

discover your need for the IVIG? (CVID?)

(I have a 15 yr old daughter with CVID and chronic daily migraines)

cerdaclan <tcerda@...> wrote: Well, I posted yesterday about how I was

feeling about my first day

ahead of me on IVIG....I don't know where that post went. Oh Well!

So, I joined my two young daughters yesterday and got my first dose

of IVIG. It was really, really,,,,,,YUCKY! I think every parent

should go through it once so they can understand why the kids get

cranky and grumpy. Thinking I would feel no effects from the 50 mg

dose of benadryl IV because I take a half dose of benadryl every

night for my drippy sinuses...I was quite shocked when I was so

looped from the benadryl that I could not walk to my chair without a

nurse holding me up. I got sick to my stomach....I FELT

HORRIBLE!!!! No ill effects from the IVIG though and I lived

through the day. Because there were 3 of us having the IVIG, they

put us into the STORAGE CLOSET!!! Seriously, they have two chairs

in the storage room ( a room that measures 5x8) where they let

sedated patients come out of sedation. We were stuck there all day!

This morning, for the first time in probably 10 years, I went down

the stairs without using the banisters as crutches! NOT A SINGLE

JOINT IN MY BODY HURTS!!! My sinuses are completely clear this

morning....something I cannot ever remember happening. I am so

excited that I might be able to live more normally now....enjoy my

children more!!! I am in complete disbeleif at how much better I

feel.

Terri Cerda mom:46, molly:5 and Maggie:3 all CVID with B cell linked

disorder

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.

To unsubscribe -unsubscribegroups (DOT)

To search group archives go to: /messages

[Guest guest]

Great news....

I lived through my first IVIG

Well, I posted yesterday about how I was feeling about my first day

ahead of me on IVIG....I don't know where that post went. Oh Well!

So, I joined my two young daughters yesterday and got my first dose

of IVIG. It was really, really,,,,,,YUCKY! I think every parent

should go through it once so they can understand why the kids get

cranky and grumpy. Thinking I would feel no effects from the 50 mg

dose of benadryl IV because I take a half dose of benadryl every

night for my drippy sinuses...I was quite shocked when I was so

looped from the benadryl that I could not walk to my chair without a

nurse holding me up. I got sick to my stomach....I FELT

HORRIBLE!!!! No ill effects from the IVIG though and I lived

through the day. Because there were 3 of us having the IVIG, they

put us into the STORAGE CLOSET!!! Seriously, they have two chairs

in the storage room ( a room that measures 5x8) where they let

sedated patients come out of sedation. We were stuck there all day!

This morning, for the first time in probably 10 years, I went down

the stairs without using the banisters as crutches! NOT A SINGLE

JOINT IN MY BODY HURTS!!! My sinuses are completely clear this

morning....something I cannot ever remember happening. I am so

excited that I might be able to live more normally now....enjoy my

children more!!! I am in complete disbeleif at how much better I

feel.

Terri Cerda mom:46, molly:5 and Maggie:3 all CVID with B cell linked

disorder

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.

To unsubscribe -unsubscribegroups (DOT)

To search group archives go to:

/messages

[Guest guest]

That is great news! I keep telling my hubby he should push his immuno

for a trial of IVIG too. He has the same problems, recurrent

sinusitis and arthritis-like pain. He is adamant that he will not do

IVIG, so I'm glad I can pass this info along. I think it would help

him a lot! Thanks for sharing!

Mom to Conner (11, possible combined immune deficiency, mild CP,

partial seizures, asthma, GERD,

Hashimoto's disease and resolved adrenal insufficiency),

Hayden (11, unknown PID, PDD-NOS, IBS and moderate hearing

loss/aided),

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

and Kelsey - (10, unknown PID, asthma)

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

[Guest guest]

Terri-how exciting that you are feeling so much better! Are you still

feeling better (i.e. no aching joints, etc?)

Glad you made it through the first IVIG. Benadryl knocks me out..

~Pattie~

" What matters is not great deeds, but great love. " ~ St. Therese of Lisieux

Family website: www.shwachman.50megs.com

_____