Re: We got the call we have been waiting for over 3 months.

[Guest guest]

Congrats! We love SubQ! What brand are you using? We use Vivaglobin. My best

advice is ...get the numbing cream! We put it on (Emla) and after 30 min is

numb. Sometimes he thinks he feels it, but he flinches even when we play with

him. 99% of the time he hasn't realized we stuck him until we reach for the

Tegaderm! How old is your child? is 11 and sometimes he gets sleepy/weepy

after. Our solution is to do it at 7:00PM so he can go to sleep when it's over.

I know it seems overwhelming at first, but pretty soon it's just like brushing

your teeth..just something you do. Feel free to e-mail me.

www.caringbridge.org/visit/alexsmith

@...: luvr4gkids@...: Mon, 31 Dec 2007

22:01:47 +0000Subject: We got the call we have been waiting for over 3

months.

We got the call today that we should know by Friday when Gestin will start his

sub q. We have been battleing the insurance company and pondering IVIG or Sub Q.

They decided due to previous reaction to IVIG that SubQ would be better taken in

his body without reaction. Anyone have any advice for us. We will do the first

infusion at Dr.Bergers office then for the 2nd and 3rd round the nurse will come

here to the house then after that we are on our own. I am very nervous, but I am

so excited that this may be the relief that he will finally receive. I hate

seeing him so sick so often. Please help if anyone can. We are open to any and

all sugestions.

_________________________________________________________________

i’m is proud to present Cause Effect, a series about real people making a

difference.

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[Guest guest]

Congradulations for getting approval. Yes the Subq is incredible. We were on IV

for 7 year and have been on Subq for over a year now. It will take several

months but you will begin to see a difference. My son does very well. He is 12

now but was only 2 when we started. It really is not that difficult to do and

just keep asking for help until you feel comfortable. Feel free to contact me

directly if you need help.

BARBIE

We got the call we have been waiting for over 3 months.

We got the call today that we should know by Friday when Gestin will

start his sub q. We have been battleing the insurance company and

pondering IVIG or Sub Q. They decided due to previous reaction to IVIG

that SubQ would be better taken in his body without reaction. Anyone

have any advice for us. We will do the first infusion at Dr.Bergers

office then for the 2nd and 3rd round the nurse will come here to the

house then after that we are on our own. I am very nervous, but I am

so excited that this may be the relief that he will finally receive. I

hate seeing him so sick so often. Please help if anyone can. We are

open to any and all sugestions.

________________________________________________________________________________\

____

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[Guest guest]

Congrats!

I'm so happy for you!

I've had great experiences with Sub-q - but never been on IVIG (My kids

that is).

If you want to chat more about it, send me an email, I'd be happy to

share our experiences with you.

YAY!

HUGS

Stef

>

> We got the call today that we should know by Friday when Gestin will

> start his sub q. We have been battleing the insurance company and

> pondering IVIG or Sub Q. They decided due to previous reaction to

IVIG

> that SubQ would be better taken in his body without reaction. Anyone

> have any advice for us. We will do the first infusion at Dr.Bergers

> office then for the 2nd and 3rd round the nurse will come here to the

> house then after that we are on our own. I am very nervous, but I am

> so excited that this may be the relief that he will finally receive.

I

> hate seeing him so sick so often. Please help if anyone can. We are

> open to any and all sugestions.

>

[Guest guest]

My 3 yr old son- started out on IVIG every 2-3 weeks at 15mts

of age. He did it for a year and then switched to weekly SQIG for

7mts and since then has gone back to IVIG again. Orginally, we

switched to SQIG because of the bad side effects/adverse reactions

from the IVIG. He had problems with vomiting, diarrhea, fevers and

abdominal distention etc.... He was hospitalized a few times

afterwards because of the side effects. We went out to Cincinnati

Childrens Hospital to see Dr Filipovich for a 2nd opinion for

diagnosis and treatment options. She highly recommended SQIG for

because of his reactions. Back home our hospital was not

doing SQIG yet. We got the ball rolling. We then made the switch to

weekly SQIG. I loved it! I hated going to the hospital every couple

of weeks to be reminded that there was something wrong with my kid.

Germs live at the hospital and far less of them at home. I love the

freedom to do it whenever I chose. It took far less time to infuse

(1.5 hr versus 10+ hrs). The side effects weren't as bad but he

still had some. required weekly steroids with his SQIG which

the doctors weren't too excited about. He continued to get just as

sick illnesswise which totally contradicts the research. His IG

levels weren't as high so we decided to go back to IVIG. We thought

it would be better to have him not feel well(side effects) every 3

weeks versus 1 day every week. I was heartbroken because I really

loved the SQ route. I was able to do it and it became a regular

routine just like his vest treatments(BDs), nebs, and meds etc... I

wish you good luck! You will love SQIG. Please feel free to email me

off line if you like.

Proud Mom to 3 yr old : PID~combine immune deficiency and

etc.....

www.caringbridge. org/visit/ matthewfranson

>

> We got the call today that we should know by Friday when Gestin

will

> start his sub q. We have been battleing the insurance company and

> pondering IVIG or Sub Q. They decided due to previous reaction to

IVIG

> that SubQ would be better taken in his body without reaction.

Anyone

> have any advice for us. We will do the first infusion at

Dr.Bergers

> office then for the 2nd and 3rd round the nurse will come here to

the

> house then after that we are on our own. I am very nervous, but I

am

> so excited that this may be the relief that he will finally

receive. I

> hate seeing him so sick so often. Please help if anyone can. We

are

> open to any and all sugestions.

>

[Guest guest]

You will do great....Dr. Berger is wonderful...plus his infusion nurse is

great...You'll love Kim....She will answer any questions you have and will help

make things go great. She is who helped us get started and I really miss her.

Mom to SCIG for two years now...

We got the call we have been waiting for over 3 months.

We got the call today that we should know by Friday when Gestin will

start his sub q. We have been battleing the insurance company and

pondering IVIG or Sub Q. They decided due to previous reaction to IVIG

that SubQ would be better taken in his body without reaction. Anyone

have any advice for us. We will do the first infusion at Dr.Bergers

office then for the 2nd and 3rd round the nurse will come here to the

house then after that we are on our own. I am very nervous, but I am

so excited that this may be the relief that he will finally receive. I

hate seeing him so sick so often. Please help if anyone can. We are

open to any and all sugestions.