Re: Seeing a difference after starting SCIG?

[Guest guest]

For my son, the first sign of improvement was that he was able to tolerate more

foods.. he was formula dependent at 18 months and by age 2 he was moving on to

more foods and almond milk. So about 6 months.. He didn't start having

decrease in infections for a few years tho. Now.. after 5 years he has only

been on abx twice this year.

Amy, mom to Nick CVID age 6.5

Seeing a difference after starting SCIG?

received her first SCIG infusion on Thursday. She has never had Ig

before and did not receive an IVIG loading dose. The home health nurse who is

helping me learn to administer the infusions indicated that it may take some

time before we start " seeing " a difference in her health situation.

I know every child is different, Ig levels are different when starting

therapy, etc. That said, however, when did YOU start to see a difference with

your child's health after starting SCIG?

Thanks,

Mom to Camille (6) and (4, CVID)

[Guest guest]

Did they give you a reason why they didn't do a loading dose first? Are you

doing infusions every 2-3 days to bump the levels higher?

Seeing a difference after starting SCIG?

> received her first SCIG infusion on Thursday. She has never had Ig

> before and did not receive an IVIG loading dose. The home health nurse who

> is helping me learn to administer the infusions indicated that it may take

> some time before we start " seeing " a difference in her health situation.

>

> I know every child is different, Ig levels are different when starting

> therapy, etc. That said, however, when did YOU start to see a difference

> with your child's health after starting SCIG?

>

> Thanks,

>

> Mom to Camille (6) and (4, CVID)

>

>

>

> ------------------------------------

>

> 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]

The loading dose is usually done to bring her levels up to a therapeutic level

so I do not know how long it will take without doing that. But you should see

some difference in about 3-6 months. Initially she may even have some

difficulties because the Gamma globulin has to be assimilated into the system

and the body sometimes has some difficulty adjusting. Over time my son started

having less infections, more energy and an overall sense of wellness. His

appetite improved. His allergies to meds, the environment and foods began to

moderate as well. It was amazing to look back as he became a pretty normal

little kid. It is hard to believe he has an immune disorder now other than the

weekly infusions and having to be aware of potential issues that he may come

across in life.

BARBIE  

From: <bluetaelon@...>

Subject: Re: Seeing a difference after starting SCIG?

Date: Sunday, August 23, 2009, 4:21 PM

 

Did they give you a reason why they didn't do a loading dose

first? Are you

doing infusions every 2-3 days to bump the levels higher?

Seeing a difference after starting SCIG?

> received her first SCIG infusion on Thursday. She has never had Ig

> before and did not receive an IVIG loading dose. The home health nurse who

> is helping me learn to administer the infusions indicated that it may take

> some time before we start " seeing " a difference in her health situation.

>

> I know every child is different, Ig levels are different when starting

> therapy, etc. That said, however, when did YOU start to see a difference

> with your child's health after starting SCIG?

>

> Thanks,

>

> Mom to Camille (6) and (4, CVID)

>

>

>

> ------------ --------- --------- ------

>

> 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 -unsubscribe@ groups.

> To search group archives go to:

> http://groups. / group// messages

[Guest guest]

We started with SCIG and never have done IVIG either. It took him about 2-3

months before of doing weekly infusions before I could notice a change. We are

now into month 6 and have been on antibiotics 3X. The first 2X were in that 2-3

month period and we are currently on antibiotics now.

>

> From: _Janes@...

> Date: Sun, 23 Aug 2009 20:54:28 +0000

> Subject: Seeing a difference after starting SCIG?

>

> received her first SCIG infusion on Thursday. She has never had Ig

before and did not receive an IVIG loading dose. The home health nurse who is

helping me learn to administer the infusions indicated that it may take some

time before we start " seeing " a difference in her health situation.

>

> I know every child is different, Ig levels are different when starting

therapy, etc. That said, however, when did YOU start to see a difference with

your child's health after starting SCIG?

>

> Thanks,

>

> Mom to Camille (6) and (4, CVID)

>

>

>

> ------------------------------------

>

> 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]

No, they didn't give me a reason. No, they're not doing them every 2-3 days.

Just once a week.

>

> Did they give you a reason why they didn't do a loading dose first? Are you

> doing infusions every 2-3 days to bump the levels higher?

>

>

>

> Seeing a difference after starting SCIG?

>

>

> > received her first SCIG infusion on Thursday. She has never had Ig

> > before and did not receive an IVIG loading dose. The home health nurse who

> > is helping me learn to administer the infusions indicated that it may take

> > some time before we start " seeing " a difference in her health situation.

> >

> > I know every child is different, Ig levels are different when starting

> > therapy, etc. That said, however, when did YOU start to see a difference

> > with your child's health after starting SCIG?

> >

> > Thanks,

> >

> > Mom to Camille (6) and (4, CVID)

> >

> >

> >

> > ------------------------------------

> >

> > 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]

I hope we're seeing some kind of improvement in 3 months. Her doctor said we're

doing a " 3-month trial " to see if it helps her! I would hope that it will - and

within the time period. Of course, I think they need to check her levels to see

where they are too....

Much to think about.

>

> From: <bluetaelon@...>

> Subject: Re: Seeing a difference after starting SCIG?

>

> Date: Sunday, August 23, 2009, 4:21 PM

>

>

>

>

>

>

>  

>

>

>

>

>

> Did they give you a reason why they didn't do a loading dose

first? Are you

>

> doing infusions every 2-3 days to bump the levels higher?

>

>

>

>

>

>

>

> Seeing a difference after starting SCIG?

>

>

>

> > received her first SCIG infusion on Thursday. She has never had Ig

>

> > before and did not receive an IVIG loading dose. The home health nurse who

>

> > is helping me learn to administer the infusions indicated that it may take

>

> > some time before we start " seeing " a difference in her health situation.

>

> >

>

> > I know every child is different, Ig levels are different when starting

>

> > therapy, etc. That said, however, when did YOU start to see a difference

>

> > with your child's health after starting SCIG?

>

> >

>

> > Thanks,

>

> >

>

> > Mom to Camille (6) and (4, CVID)

>

> >

>

> >

>

> >

>

> > ------------ --------- --------- ------

>

> >

>

> > 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 -unsubscribe@ groups.

>

> > To search group archives go to:

>

> > http://groups. / group// messages

[Guest guest]

Thanks. I'm really thinking the immune system is a big issue here -- obviously,

or he wouldn't be putting CVID on all her paperwork and starting her on Ig. Of

course, he won't come out and TELL me she has an immune deficiency, although

he's treating her " as if. " I wish we could stop the " dance " we're doing and talk

about this straight out. She has a follow-up appointment in several weeks. I'll

have to get my thoughts together by then and have a " heart to heart " with him.

>

> For my son, the first sign of improvement was that he was able to tolerate

more foods.. he was formula dependent at 18 months and by age 2 he was moving on

to more foods and almond milk. So about 6 months.. He didn't start having

decrease in infections for a few years tho. Now.. after 5 years he has only

been on abx twice this year.

>

> Amy, mom to Nick CVID age 6.5

> Seeing a difference after starting SCIG?

>

>

> received her first SCIG infusion on Thursday. She has never had Ig

before and did not receive an IVIG loading dose. The home health nurse who is

helping me learn to administer the infusions indicated that it may take some

time before we start " seeing " a difference in her health situation.

>

> I know every child is different, Ig levels are different when starting

therapy, etc. That said, however, when did YOU start to see a difference with

your child's health after starting SCIG?

>

> Thanks,

>

> Mom to Camille (6) and (4, CVID)

>

>

>

>

>

>

[Guest guest]

Thanks. I hope we see overall improvement in in that time frame too. Her

ENT, immunologist, and ped all think this will help her. I'm just going to have

to give it time. The immunologist also said something about checking her levels

again so he can adjust her dose if necessary. He wants her IgG around 1000, I

think -- almost double where it is now.

>

>

> We started with SCIG and never have done IVIG either. It took him about 2-3

months before of doing weekly infusions before I could notice a change. We are

now into month 6 and have been on antibiotics 3X. The first 2X were in that 2-3

month period and we are currently on antibiotics now.

>

>

>

> >

> > From: _Janes@...

> > Date: Sun, 23 Aug 2009 20:54:28 +0000

> > Subject: Seeing a difference after starting SCIG?

> >

> > received her first SCIG infusion on Thursday. She has never had Ig

before and did not receive an IVIG loading dose. The home health nurse who is

helping me learn to administer the infusions indicated that it may take some

time before we start " seeing " a difference in her health situation.

> >

> > I know every child is different, Ig levels are different when starting

therapy, etc. That said, however, when did YOU start to see a difference with

your child's health after starting SCIG?

> >

> > Thanks,

> >

> > Mom to Camille (6) and (4, CVID)

> >

> >

> >

> > ------------------------------------

> >

> > 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