Re: And the drama continues

[Guest guest]

If they don't change anything (the brand, the rate, the pre-med, the

hydration)  and they give it the exact same way.....she very well may get

another reaction.

My son had it in Jan 2010, hosp 3 days....then again in April, worse aseptic

meningitis...hosp for 5 days, seizures, worse....because they had not altered

anything.

Now he gets 1/2 dose every two weeks and a standing order for a steroid if he

gets a severe headache and also IV hydration.

So make sure these things are improved, because she may get the same reaction if

it's done the same way.

Good luck....Sue

From: le Mina <daniellemina@...>

Subject: And the drama continues

Date: Friday, September 3, 2010, 11:24 PM

 

As many of you know, Tristen was doing subq for 2 years, we switched

insurance

companies and the new company wouldn't cover subq. We switched to ivig and

within 24 hours Tristen was in the ER with aseptic meningitis. So here we are

now, 2 weeks after that episode and Tristen tells me out of the blue the other

day that she doesn't want to do her infusions at home anymore, she liked it

better in the hospital. (she's only 5 1/2, but I try to give her some say in her

treatment). So today after fighting with the insurance company, we finally got

approval for subq again. But now I'm not sure I can convince Tristen to go back

to it! I'm having a struggle trying to decide what is best. Doing the IVIG and

risk her having a reaction again or going back to subq. To be honest, I kinda

enjoyed the IVIG and not having to do the infusions and just sitting back for

the day. But she has been sick for 4 weeks now and 3 weeks of septra has not

kicked this sinus infection.

I'm trying to weigh the pros/cons for each and I'm sure the subq is the route to

go, but I'm having a hard time going back to it, for both of us.

I may try the IVIG one more time and see what happens and then see what's best

for us. I have an appt with our immuno next week to discuss this all with him

and see what he thinks. I know the immuno and pedi are both worried about her

reacting again, which doesn't give me much hope.

How does one make this decision?

le

[Guest guest]

Good Morning le,

I wanted to chime in on this as I am a parent of two little ladies with PIDD.

But, I have the added benefit myself of experiencing the same things and

understanding how they feel because I have it to.

So we were all on IVIG until the dawn of subq. I got aseptic meningitis from

IVIG. It started out mild and with each subsequent dose, it got worse and worse

and lasted longer and longer. Thankfully, we went on subq as soon as it became

available.

I agree that, if they were to continue IVIG and keep everything the same, you

will have the same issues again. It is excruciating to have aseptic meningitis.

A 5 year old cannot express the pain as well as an adult. Because I had

problems with subq, I eventually ended back up on IVIG. However, I changed

brands and slowed the rate WAAAAAYYYYYYY down and split the dose to every two

weeks. Each dose, even at every two weeks, ran for 9 hours. I also got a bolus

of fluids 1st. This kept the headaches and other issues very mild. If I could

do subq, I would much prefer it.

Trust me, with two kids on sub q and myself on IVIG, it is a chore and one that

I always wished would go away. For us, it seemed we could never forget about it

as it was constantly a part of our lives....setting up IVs for me....cleaning

house strapped to an IV pole.....setting up yards of tubing and

infusions...keeping up with orders etc. It seems constant at times. BUT, it is

a labor of love. It is about rememberin each time you go through it, how much

your child means to you and how important it is that you take care of her. It

sounds like you are doing a wonderful job of this!

There are so many benefits to being at home. On subq, I can hook up the kids

and they can go back to being kids....even riding their bikes, dancing etc. We

simply resume life while they infuse. They are not being exposed to viruses and

bacteria in a clinic. Home is so much healthier all the way around. AND, the

one big benefit of subq over IV is that levels remain peaked as opposed to the

" bell curve " of IVIG. This leads to most remaining healthier.

Choices: You are so right to give her choices....to allow Tristen to control

what she can. But there are also times that we, as parents, have to take over

the steering wheel, knowing that we can make a better, informed decision. It

sounds like this may be one of them. Perhaps, rather than allowing her to

decide between IV and SC, allow her to help with the infusion....she can help

set things up; push buttons on the pump. Find other places to give her choices

and involve her in her treatment.

Again, I think the biggest point is that, if she got aseptic meningitis from the

last infusion, and everything remains the same, she will get it again and it

could be much worse.

Terri

Mom, Molly (10) and Maggie (8) CID

>

> As many of you know, Tristen was doing subq for 2 years, we switched insurance

> companies and the new company wouldn't cover subq. We switched to ivig and

> within 24 hours Tristen was in the ER with aseptic meningitis. So here we are

> now, 2 weeks after that episode and Tristen tells me out of the blue the other

> day that she doesn't want to do her infusions at home anymore, she liked it

> better in the hospital. (she's only 5 1/2, but I try to give her some say in

her

> treatment). So today after fighting with the insurance company, we finally

got

> approval for subq again. But now I'm not sure I can convince Tristen to go

back

> to it! I'm having a struggle trying to decide what is best. Doing the IVIG

and

> risk her having a reaction again or going back to subq. To be honest, I kinda

> enjoyed the IVIG and not having to do the infusions and just sitting back for

> the day. But she has been sick for 4 weeks now and 3 weeks of septra has not

> kicked this sinus infection.

>

>

> I'm trying to weigh the pros/cons for each and I'm sure the subq is the route

to

> go, but I'm having a hard time going back to it, for both of us.

>

> I may try the IVIG one more time and see what happens and then see what's best

> for us. I have an appt with our immuno next week to discuss this all with him

> and see what he thinks. I know the immuno and pedi are both worried about her

> reacting again, which doesn't give me much hope.

>

> How does one make this decision?

>

> le

>

[Guest guest]

Just wanted to elaborate on my previous post to le....neither my daughters

nor myself are on immunoglobin currently. After a complete collapse of medical

care with our recent move, we were not able to secure a prescribing physician

and a treatment plan and had to stop infusing on July 4th. Additionally, I had

to stop my IVIG 19 months ago. The girls were diagnosed with CID 7 years ago

and I was diagnosed 44 years ago. We are going through a major hiccup in care

that we hope resolves soon.

Terri

> >

> > As many of you know, Tristen was doing subq for 2 years, we switched

insurance

> > companies and the new company wouldn't cover subq. We switched to ivig and

> > within 24 hours Tristen was in the ER with aseptic meningitis. So here we

are

> > now, 2 weeks after that episode and Tristen tells me out of the blue the

other

> > day that she doesn't want to do her infusions at home anymore, she liked it

> > better in the hospital. (she's only 5 1/2, but I try to give her some say in

her

> > treatment). So today after fighting with the insurance company, we finally

got

> > approval for subq again. But now I'm not sure I can convince Tristen to go

back

> > to it! I'm having a struggle trying to decide what is best. Doing the IVIG

and

> > risk her having a reaction again or going back to subq. To be honest, I

kinda

> > enjoyed the IVIG and not having to do the infusions and just sitting back

for

> > the day. But she has been sick for 4 weeks now and 3 weeks of septra has

not

> > kicked this sinus infection.

> >

> >

> > I'm trying to weigh the pros/cons for each and I'm sure the subq is the

route to

> > go, but I'm having a hard time going back to it, for both of us.

> >

> > I may try the IVIG one more time and see what happens and then see what's

best

> > for us. I have an appt with our immuno next week to discuss this all with

him

> > and see what he thinks. I know the immuno and pedi are both worried about

her

> > reacting again, which doesn't give me much hope.

> >

> > How does one make this decision?

> >

> > le

> >

>