Re: We have a diagnosis....

[Guest guest]

from Dale, Mom to Katy, CVID, age 20

Amy, I know nothing about Sub-Q except that I wish it had been

available to Katy instead of starting IVIG. She's looking into changing

but it's hard after you've already established a routine. From what

I've learned so far -- there are very few side-effects and it's much

gentler on the system than flooding the body with IgG through IV and

expecting it to last for four weeks.

I'll try to explain what I think is going on with . I'm

assuming the diagnosis has been made based on the fact that even though

he has sufficient IgG floating in his system, it's apparently not

building antibodies to the stuff that is dangerous. So -- he has

numbers, but not effectiveness. When you don't build antibodies to the

pneumococcals that indicates that your B-cells aren't working and you

aren't protected from a multitude of germs of that type. There's lots

of different causes for the B-cells to not work, but by giving him a

diagnosis of CVID, I assume that they have ruled out any T-cell problems

or complement problems, etc. That's good! It also puts him in the

possibility of having transient CVID. And you won't know that until

he's through puberty! In the mean time, they will administer the Sub-Q

IgG so that his lungs and sinuses and possibly even his gut can get and

stay healthy (or at least healthier!!) What fabulous news!

Let us all know how the Sub-Q goes.

In His service,

Dale

>All came back good except the pneumococcal titers. He has no

>anitbodies for all 12 subclasses. They have dx him with CVID, which

>I don't understand since he has normal levels but they are low of

>all the IG's.

>

[Guest guest]

Hi Amy,

I don't read much on this e-mail site anymore as my family's primary immune

deficiencies are relatively contained in terms of how they affect us (let's

hope it stays that way), but I did want to tell you that I have an IgA

deficiency

and a polysaccharide antibody deficiency (I don't make enough antibodies to

the pneumoccocal vaccine or to the polysaccharide coated bacteria that are out

in the world). Sub-Q has helped me tremendously - I really feel like I live a

" normal " life now and I was at the point of quitting work, pulling my oldest

son (he was the only one I had at the time I was so sick) out of school and

becoming a " hermit " - just to stay well. And now, I work some, my children go

to school, and I run, hike, and live a relatively " normal " life. So, I hope

that gives you some positive feelings...

It is very tough to have an ill child! My oldest son has an IgA def., and an

IgG subclass 2 deficiency and my youngest son has just been diagnosed with a

mitochondrial disease.

Good luck with the subq! I definitely recommend it over the IV's - subq gives

me no side effects and I think the continual high levels of antibodies

floating through my system also keeps me healthier.

Anne R

[Guest guest]

Oh, Amy! I am so sorry! I sure hope this works for him. I bet you cannot even

imagine how great it will be to have a healthy kid! This makes me nervous for

' appt. I am not sure what to expect now. God luck with the first dose

tomorrow and fingers crossed that it goes well for you both! Hugs, sweetie!

Melody

We have a diagnosis....

, 19 months, had all those blood tests done, 7 vials full.

All came back good except the pneumococcal titers. He has no

anitbodies for all 12 subclasses. They have dx him with CVID, which

I don't understand since he has normal levels but they are low of

all the IG's. Anyways.. he starts sub-cut IVIG tomorrow morning and

I am very nervous. Any tips, suggestions? He will go every two

weeks.

Thanks in advance,

Amy and MSPI, GERD, asthma and Now 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]

Dale,

Thanks for the encouragement. I talked with at IDF today and she calmed

a lot of my nerves. Yes they tested for the complement problems and

the t-cells as well. He is going in for a CT scan of his lungs next week to get

a baseline. I am ready, I think, for tomorrow. I have my infusion log,

notebook, backpack full of toys... and premeds. I will let you all know how he

does.

Amy and

Re: We have a diagnosis....

from Dale, Mom to Katy, CVID, age 20

Amy, I know nothing about Sub-Q except that I wish it had been

available to Katy instead of starting IVIG. She's looking into changing

but it's hard after you've already established a routine. From what

I've learned so far -- there are very few side-effects and it's much

gentler on the system than flooding the body with IgG through IV and

expecting it to last for four weeks.

I'll try to explain what I think is going on with . I'm

assuming the diagnosis has been made based on the fact that even though

he has sufficient IgG floating in his system, it's apparently not

building antibodies to the stuff that is dangerous. So -- he has

numbers, but not effectiveness. When you don't build antibodies to the

pneumococcals that indicates that your B-cells aren't working and you

aren't protected from a multitude of germs of that type. There's lots

of different causes for the B-cells to not work, but by giving him a

diagnosis of CVID, I assume that they have ruled out any T-cell problems

or complement problems, etc. That's good! It also puts him in the

possibility of having transient CVID. And you won't know that until

he's through puberty! In the mean time, they will administer the Sub-Q

IgG so that his lungs and sinuses and possibly even his gut can get and

stay healthy (or at least healthier!!) What fabulous news!

Let us all know how the Sub-Q goes.

In His service,

Dale

>All came back good except the pneumococcal titers. He has no

>anitbodies for all 12 subclasses. They have dx him with CVID, which

>I don't understand since he has normal levels but they are low of

>all the IG's.

>

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<PedP\

ID/messages>

[Guest guest]

Anne,

Thanks for your reply, it is great to hear about how successful the sub Q is for

you. That really gives us hope.

Amy and

Re: We have a diagnosis....

Hi Amy,

I don't read much on this e-mail site anymore as my family's primary immune

deficiencies are relatively contained in terms of how they affect us (let's

hope it stays that way), but I did want to tell you that I have an IgA

deficiency

and a polysaccharide antibody deficiency (I don't make enough antibodies to

the pneumoccocal vaccine or to the polysaccharide coated bacteria that are out

in the world). Sub-Q has helped me tremendously - I really feel like I live a

" normal " life now and I was at the point of quitting work, pulling my oldest

son (he was the only one I had at the time I was so sick) out of school and

becoming a " hermit " - just to stay well. And now, I work some, my children go

to school, and I run, hike, and live a relatively " normal " life. So, I hope

that gives you some positive feelings...

It is very tough to have an ill child! My oldest son has an IgA def., and an

IgG subclass 2 deficiency and my youngest son has just been diagnosed with a

mitochondrial disease.

Good luck with the subq! I definitely recommend it over the IV's - subq gives

me no side effects and I think the continual high levels of antibodies

floating through my system also keeps me healthier.

Anne R