Re: Re: Another confused parent looking for some advice

September 21, 2010

IMIG? wow, I thought they stopped doing that years ago, isn't it really painful?

I'm thinking thats one of the main reasons they switched to IVIG and SCIG. I

agree, levels would be much higher with IV and probably even higher on SCIG. I

know we jumped from 800 to 1200 switching from IVIG to SCIG and thats when the

constant illness stopped.

________________________________

From: osdbmom <osdbmom@...>

Sent: Tue, September 21, 2010 8:24:27 AM

Subject: Re: Another confused parent looking for some advice

She is on IMIG...thats an injection, right? I wonder if her levels would be

higher, if she could stay better if on IVIG or SCIG? I have three kids with

cvid, on IVIG monthly...I remember when my kids had the look you describe...just

looking sickly all the time, getting over one infection only to get another one

a week or less later. My youngest son still doesnt grow well...he's also eight,

in about the 2% for growth, but he is far healthier than before monthly IVIG.

We've also done prophylaxis abx thru the winter when needed.

Hypogammaglobulinemia is the dx my two sons had initially...which basically

meant low IGG levels and low titers to vacc's. Eventually all three of my kids

were dx'd with CVID, when it was found they also had IGM and IGA deficiency.

There is another group I belong to on for kids with SDS...but lots of moms

are there who have kids with mito problems, maybe you could join?

good luck,

valarie

mom to 3 w/cvid

>

> I have posted before about my 8 yr old daughter. She has a Mito diagnosis, and

>is on IMIG every 2 weeks, to cut down on the number of infections, etc. She has

>a lot of various health issues.

>

> SHe has had low IgG subclasses, just below normal range. She also does not

hold

>titers to vaccines - she will get the vax, make titers at the one month mark,

>but when retested in 6-12 months, they have dropped back off again. She has had

>3 sinus surgeries, with repeated infections. Recently, it was discovered that

>she has a severe MBL deficiency.

>

> For several years, we did prophylactic abx over the winter (Oct through April)

>but she still had breakthrough infections, and then ended up with severe sinus

>and throat infections that grew out resistant bacteria when cultured. She

still,

>despite the abx, required sinus irrigation to clean out the horrible infections

>by the time spring rolled around. For this reason, we are reluctant to do this

>again, although this is all they are offering us for treatment.

>

> This year, even with being on the IG replacement, she has required abx every

>month for one thing or another - usually either strep or sinus infections. We

>always be sure to culture the throat after treatment of strep to make sure it

is

>really gone. And for the sinuses we always do a 21 day course of abx and a 5

>day course of steroids.

>

> I just really don't know what to do with her. Because of the MIto, when she

has

>an infection, other areas are affected - her last strep she had increased

>seizures, which is just awful. I am always concerned that she is going to have

>something worse happen when she is sick.

>

> The Immuno we see regularly doesn't really want to investigate - basically

just

>'blames Mito' for it all. We sought a second opinion, which didn't help at all.

>All they can offer us is prophylactic abx, and treating things as they come up.

>It seems as if the Ig replacement she gets should be helping all of this,

>doesn't it? She always 'looks sickly', she's not growing, and it just seems

like

>she can be around a single germ and will end up really sick. She is

>homeschooled, so not exposed to a whole lot - I can't even imagine how much

>worse it would be if she were in school.

>

> The other confusing thing is that when we left the 2nd Immuno's office, he

>marked " hypergammaglobulinemia " as her dx, although nothing was ever said to me

>about it. I thought that was only supported through labs?

>

> I would really appreciate any advice that anyone can share.

>

> ~a

>

------------------------------------

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September 21, 2010

Seriously? I thought that was done away with in the 80's.

Ursula

On Sep 21, 2010, at 11:24 AM, " osdbmom " <osdbmom@...> wrote:

> She is on IMIG...thats an injection, right? I wonder if her levels would be

higher, if she could stay better if on IVIG or SCIG? I have three kids with

cvid, on IVIG monthly...I remember when my kids had the look you describe...just

looking sickly all the time, getting over one infection only to get another one

a week or less later. My youngest son still doesnt grow well...he's also eight,

in about the 2% for growth, but he is far healthier than before monthly IVIG.

> We've also done prophylaxis abx thru the winter when needed.

> Hypogammaglobulinemia is the dx my two sons had initially...which basically

meant low IGG levels and low titers to vacc's. Eventually all three of my kids

were dx'd with CVID, when it was found they also had IGM and IGA deficiency.

> There is another group I belong to on for kids with SDS...but lots of

moms are there who have kids with mito problems, maybe you could join?

>

> good luck,

> valarie

> mom to 3 w/cvid

>

> >

> > I have posted before about my 8 yr old daughter. She has a Mito diagnosis,

and is on IMIG every 2 weeks, to cut down on the number of infections, etc. She

has a lot of various health issues.

> >

> > SHe has had low IgG subclasses, just below normal range. She also does not

hold titers to vaccines - she will get the vax, make titers at the one month

mark, but when retested in 6-12 months, they have dropped back off again. She

has had 3 sinus surgeries, with repeated infections. Recently, it was discovered

that she has a severe MBL deficiency.

> >

> > For several years, we did prophylactic abx over the winter (Oct through

April) but she still had breakthrough infections, and then ended up with severe

sinus and throat infections that grew out resistant bacteria when cultured. She

still, despite the abx, required sinus irrigation to clean out the horrible

infections by the time spring rolled around. For this reason, we are reluctant

to do this again, although this is all they are offering us for treatment.

> >

> > This year, even with being on the IG replacement, she has required abx every

month for one thing or another - usually either strep or sinus infections. We

always be sure to culture the throat after treatment of strep to make sure it is

really gone. And for the sinuses we always do a 21 day course of abx and a 5 day

course of steroids.

> >

> > I just really don't know what to do with her. Because of the MIto, when she

has an infection, other areas are affected - her last strep she had increased

seizures, which is just awful. I am always concerned that she is going to have

something worse happen when she is sick.

> >

> > The Immuno we see regularly doesn't really want to investigate - basically

just 'blames Mito' for it all. We sought a second opinion, which didn't help at

all. All they can offer us is prophylactic abx, and treating things as they come

up. It seems as if the Ig replacement she gets should be helping all of this,

doesn't it? She always 'looks sickly', she's not growing, and it just seems like

she can be around a single germ and will end up really sick. She is

homeschooled, so not exposed to a whole lot - I can't even imagine how much

worse it would be if she were in school.

> >

> > The other confusing thing is that when we left the 2nd Immuno's office, he

marked " hypergammaglobulinemia " as her dx, although nothing was ever said to me

about it. I thought that was only supported through labs?

> >

> > I would really appreciate any advice that anyone can share.

> >

> > ~a

> >

>

September 21, 2010

I would agree that it is the NOT the choice route for giving Gamma. You cannot

get the volume to actually keep the system stable. Has anyone done a trough

level on her Ig to see what she is getting is helping her levels. I know for my

son if he dips below 900 he is sick. I know most doctors are looking for a 1100

level.

Plus the shots are SOOO painful since there is so much volume ( I have have

several over the years). I sure would be looking for another plan.

BARBIE

________________________________

From: Ursula Holleman <uahollem@...>

" " < >

Sent: Tue, September 21, 2010 8:33:46 AM

Subject: Re: Re: Another confused parent looking for some advice

Seriously? I thought that was done away with in the 80's.

Ursula

On Sep 21, 2010, at 11:24 AM, " osdbmom " <osdbmom@...> wrote:

> She is on IMIG...thats an injection, right? I wonder if her levels would be

>higher, if she could stay better if on IVIG or SCIG? I have three kids with

>cvid, on IVIG monthly...I remember when my kids had the look you

describe...just

>looking sickly all the time, getting over one infection only to get another one

>a week or less later. My youngest son still doesnt grow well...he's also eight,

>in about the 2% for growth, but he is far healthier than before monthly IVIG.

>

> We've also done prophylaxis abx thru the winter when needed.

> Hypogammaglobulinemia is the dx my two sons had initially...which basically

>meant low IGG levels and low titers to vacc's. Eventually all three of my kids

>were dx'd with CVID, when it was found they also had IGM and IGA deficiency.

>

> There is another group I belong to on for kids with SDS...but lots of

>moms are there who have kids with mito problems, maybe you could join?

>

> good luck,

> valarie

> mom to 3 w/cvid

>

> >

> > I have posted before about my 8 yr old daughter. She has a Mito diagnosis,

>and is on IMIG every 2 weeks, to cut down on the number of infections, etc. She

>has a lot of various health issues.

> >

> > SHe has had low IgG subclasses, just below normal range. She also does not

>hold titers to vaccines - she will get the vax, make titers at the one month

>mark, but when retested in 6-12 months, they have dropped back off again. She

>has had 3 sinus surgeries, with repeated infections. Recently, it was

discovered

>that she has a severe MBL deficiency.

>

> >

> > For several years, we did prophylactic abx over the winter (Oct through

>April) but she still had breakthrough infections, and then ended up with severe

>sinus and throat infections that grew out resistant bacteria when cultured. She

>still, despite the abx, required sinus irrigation to clean out the horrible

>infections by the time spring rolled around. For this reason, we are reluctant

>to do this again, although this is all they are offering us for treatment.

> >

> > This year, even with being on the IG replacement, she has required abx every

>month for one thing or another - usually either strep or sinus infections. We

>always be sure to culture the throat after treatment of strep to make sure it

is

>really gone. And for the sinuses we always do a 21 day course of abx and a 5

day

>course of steroids.

>

> >

> > I just really don't know what to do with her. Because of the MIto, when she

>has an infection, other areas are affected - her last strep she had increased

>seizures, which is just awful. I am always concerned that she is going to have

>something worse happen when she is sick.

>

> >

> > The Immuno we see regularly doesn't really want to investigate - basically

>just 'blames Mito' for it all. We sought a second opinion, which didn't help at

>all. All they can offer us is prophylactic abx, and treating things as they

come

>up. It seems as if the Ig replacement she gets should be helping all of this,

>doesn't it? She always 'looks sickly', she's not growing, and it just seems

like

>she can be around a single germ and will end up really sick. She is

>homeschooled, so not exposed to a whole lot - I can't even imagine how much

>worse it would be if she were in school.

> >

> > The other confusing thing is that when we left the 2nd Immuno's office, he

>marked " hypergammaglobulinemia " as her dx, although nothing was ever said to me

>about it. I thought that was only supported through labs?

>

> >

> > I would really appreciate any advice that anyone can share.

> >

> > ~a

> >

>

September 21, 2010

There are several things you need to find out to make an informed decision

about your children's care.

1. what diagnosis did your doctor put down to have the IM injections

approved.

2. How many grams of gammaglobulin is each child getting every 2 weeks. Not

the volume of the shot but the number of grams of medicine.

3. If you are exposing your children to a blood product (which gammaglobulin

is) then you need to know that they are being provided with therapeutic

coverage. The way to know this is to have levels run every 6 months to make

sure that the injections every 2 weeks are supplementing their system enough

to at least put them at level with an immune competent person. Not

necessarily better than their system but at least supplementing the low

natural antibodies with enough that they can't mount a good fight against

infections.

I think that's what alot of patients on gammaglobulin tend to forget. Just

because your infusion or injecting this medicine it doesn't mean you're

guaranteed a free ride against infections. It just means that you're

bringing a deficient or dysfunctional system up to par and giving it the

same fighting chance that an immune competent person would have.

There will be break through infections. What you want to look at is whether

or not there is enough medicine going into their system to allow them to

clear each infection before it does damage. Are they clearing these

infections in the same amount of time as say their classmates or their

healthy siblings. (granted this is barring any organ damage or other

co-morbid conditions that can complicate a PRIMARY immune deficiency).

Ursula

mom to Macey (15,CVID)

On Tue, Sep 21, 2010 at 2:45 PM, beyeafamily <debeyea@...> wrote:

>

> >

> > I would agree that it is the NOT the choice route for giving Gamma. You

> cannot

> > get the volume to actually keep the system stable. Has anyone done a

> trough

> > level on her Ig to see what she is getting is helping her levels. I know

> for my

> > son if he dips below 900 he is sick. I know most doctors are looking for

> a 1100

> > level.

> >

> > Plus the shots are SOOO painful since there is so much volume ( I have

> have

> > several over the years). I sure would be looking for another plan.

> >

> > BARBIE

> >

>

> I understand that IMIG is not real common, but the Immunologist my daughter

> sees told me that he has over 100 patients on it. I actually have two kids

> on it, ages 8 and 13. Both of them say that the shots really don't hurt at

> all. They have been on it for almost 2 years now - every two weeks. It has

> really seemed to make a difference for the older child - definitely

> decreased the severity and occurance of infections. (but she does not have

> the same MBL deficiency as the younger one).

>

> I did see the 2nd Immuno, who came highly recommended by IDF, for a 2nd

> opinion, and was wondering if perhaps IV or SC would be a better route, but

> his only suggestion was the prophylactic abx, which we are worried about

> doing again, since we have had such bad luck with it. He was against her

> being on any kind of IG replacement actually, not even the IM, because her

> numbers were 'not that low' to warrant it. He was unwilling to test anything

> again because he felt the numbers would be altered because of her being on

> IG therapy for so long.

>

> No one has ever tested (or re-tested) IgG levels on her since being on

> therapy, so I don't know what her levels are. I know that they were

> considered low before, but not low enough to make a diagnosis, from what

> they told me.

>

> I am kind of running out of options. There's not really any other Immuno's

> I can go to for yet another opinion, so I have to work with these guys. In

> fact the 2nd Immuno told us that he couldn't do anything more for us because

> he didn't even agree with the plan we were on now.

>

> It's just so frustrating to see her sick all the time and not feel like we

> have any help. I wish I knew the right things to ask or say to make things

> different for her.

>

> I know that one thing that was told to us was that insurance would give us

> a hard time with IV or SCIG because we don't have a definite dx, but they

> don't have any problem with the IM shots, because they are so much cheaper.

>

> Thanks

> a

>

September 21, 2010