More SubQ

[Guest guest]

Sam had his IVIG today and the immuno's nurse brought up SubQ and asked if we

might be interested in it. (She mentioned a patient from Oklahoma who gets it,

I said, " Oh, you mean Calvin???? " , isn't Marilyn a sweetheart?)

They've been started quite a few on it in the last few months. It sounds like

they will be recommending the subq when possible as it has really benefited the

patients in keeping the levels more stable. Less fatigue at the end of the

cycle and less break through infections.

Of course, we ARE interested. I just have to get across to that one

stick a week really is better than once every 28 days.

She mentioned that even could be learning to administer it to himself,

which I think would be good as long as he is supervised. It would teach him at

an early age how to manage his illness himself, which could help him later when

he's out from under mom and dad's wings.

So, for anyone who's child was transitioned from IVIG to SubQ, especially if

your child was around Sam's age when switched (he'll be 8 on 12-10), what did

you do to help your child feel comfortable about the change? And would any of

your kid's be willing to send an email to Sam at my personal email address

telling him what it's like?

Thanks in advance.

God bless,

Wenoka (Sam, almost 8, Hyper IgM, Sensory Integration Disorder, Seizure

Disorder)

[Guest guest]

In a message dated 12/1/2004 10:38:15 PM Pacific Standard Time,

yhwhworship@... writes:

So, for anyone who's child was transitioned from IVIG to SubQ, especially if

your child was around Sam's age when switched (he'll be 8 on 12-10), what did

you do to help your child feel comfortable about the change? And would any of

your kid's be willing to send an email to Sam at my personal email address

telling him what it's like?

Wenoka,

Obviously, we haven't started IVIG yet. But, I wanted to tell you that I

have seen in the last two years that my son wants to take control of his health

and meds. He has even done his own strep tests, suction, etc. I think Sam

will maybe not be thrilled in the beginning, but will naturally want to be in

charge of his own stick. I can't wait for Bri to have body fat because I want

to do SubQ also!! Please let us know how it goes?

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

Pulmonary Valve transplant, Mitral valve stenosis, chronic ear, nose and throat

infections, asthma, severe allergies (including meds), Carnitine deficiency,

GERD,

suspected Di syndrome.

[Guest guest]

Wenoka,

Marilyn is great!! She is the main reason we have not gotten frustrated through

the changes in immuno docs over the last three years. She is the one we deal

with most the time. I think we all know who REALLY runs the immuno dept there,

eh? ;-)

There is another patient from OK who gets subq and they are on the list, I

think. His name is Braden and she is Shari. He may be close to Sam's age, I

think. Calvin would love to write and tell Sam about his experiences with SubQ,

but he doesn't know how to write yet:-). The change has been great for our

family. We do try and make the SubQ time special for Calvin---a treat or

activity. This was because the OK Children's infusions were usually enjoyable

in a wierd way: mom's undivided attention(Calvin is 8th of 8 kids), special

food, videos and lots of positive attention from the nurses.

Our travel plans this Christmas are not limited by our infusion schedule. I

think we may even do one SubQ on the road:-). I was musing on Thanksgiving at

how thankful I am for the box that arrives on my doorstep promptly each month

which contains the missing pieces of Calvin's immune system. The wonders of

modern medical technology:-)...and FEDEX.

HOpe it all goes well. Let us know...

Fisher

mom of Calvin, 3.5yo, XLA

Wenoka & <yhwhworship@...> wrote:

Sam had his IVIG today and the immuno's nurse brought up SubQ and asked if we

might be interested in it. (She mentioned a patient from Oklahoma who gets it,

I said, " Oh, you mean Calvin???? " , isn't Marilyn a sweetheart?)

__________________________________________________

[Guest guest]

That sounds like a great idea. But maybe not til after the next aptmt (12/29)

when things are more definite. I don't want to make a really big deal about it

and then not have it pan out.

Thanks so much.

Wenoka

More SubQ

Sam had his IVIG today and the immuno's nurse brought up SubQ and asked if

we might be interested in it. (She mentioned a patient from Oklahoma who gets

it, I said, " Oh, you mean Calvin???? " , isn't Marilyn a sweetheart?)

They've been started quite a few on it in the last few months. It sounds

like they will be recommending the subq when possible as it has really benefited

the patients in keeping the levels more stable. Less fatigue at the end of the

cycle and less break through infections.

Of course, we ARE interested. I just have to get across to that one

stick a week really is better than once every 28 days.

She mentioned that even could be learning to administer it to

himself, which I think would be good as long as he is supervised. It would

teach him at an early age how to manage his illness himself, which could help

him later when he's out from under mom and dad's wings.

So, for anyone who's child was transitioned from IVIG to SubQ, especially if

your child was around Sam's age when switched (he'll be 8 on 12-10), what did

you do to help your child feel comfortable about the change? And would any of

your kid's be willing to send an email to Sam at my personal email address

telling him what it's like?

Thanks in advance.

God bless,

Wenoka (Sam, almost 8, Hyper IgM, Sensory Integration Disorder, Seizure

Disorder)

[Guest guest]

Yes, that is my direct email. We don't have anything definite about when/if we

will be starting it. Our next IVIG is 12/29 at which time they will be talking

with us about whether or not we might be advised to start SubQ.

Sam turns eight this Friday. That would be really neat if someone his own age

could talk to him about it. (We have an All Distance program on our phone, so

all services, including long distance, is one flat fee. If Sam responds well to

the note, perhaps he could call Braden sometime??? We'll wait and see if they

even get him started on it.)

Thanks for responding!

God bless,

Wenoka (AMY - 10 / Sam - 8 on Friday, Hyper IgM, Sensory Integration Disorder,

Seizure Disorder / Christi - 4 Year Old Attitude Disorder)

Re: More SubQ

I saw the response from . I'm the other Oklahoma person whose son only

did IVIG for 4 months, and then we started sub-q the 5th month. The

comparison that worked for us, but won't work for most probably, is that we

were driving from Tulsa to Little Rock to Arkansas Children's Hospital for

IVIG. So, he hates riding in the car b/c he gets car sick on long trips, so

I told him it would be much better than the long drive. Only once has he

thought the long drive would be better and that's b/c he and his dad didn't

get enough EMLA on the needle site. Of course, his dad then goes to the

grocery store and Mom puts in the needle, so I get the credit for how

painful it was! Braden turned 8 in September, and I will ask him to send a

message. I'm a little confused on who it was wanting the message sent to

Sam -- is the direct e-mail yhwhworship@...?