Re: Advise , Please

[Guest guest]

First of all let me say welcome to the group. I will address each issue

as i can.

>

> 1. Are any of your children on the lowest level of normal? Did any

> of you get second opinions? Yes , who is 8 yrs old now, has

> always been on the borderlinish deffiecency or on the low end of

> normal. I have not officially gotten a second opinion but by default

> because of moving to a different location. The newest tests also

> revealed the lowishness of his immune study, we are talking more than

> 200 points below normal on the IgG levels.

>

> 2. How have your doctors strengthened your child(ren)'s immune

> system(s)? Would you suspect that the doctors could use the same

> methods for us? The only thing that has kept the inflamation away is

> being on long term clarythromicin, antibiotic, therapy. He has had

> numerous ear and sinus infections. He is working on his 3rd set of

> tubes and he also don't have his adnoids since they came out with the

> second set of tubes. He then started with the sinus issues and the

> only thing that has worked is what was said previously, not even

> surgery or IV antibiotics got rid of it completely. We have now

> started what is called IVIG therapy which is giving the IgG by iv

> route to boost the immune system. He has only had one infusion of that

> so I can't really tell yet if it works but I am thinking that it is

> working, will post about it later.

>

> 3. What questions should we ask the doctors? Not sure what questions

> to ask but am sure that someone here can help you with that one.

Hope I have helped some.

Cassie

[Guest guest]

First of all welcome Jodi, to our group.

There's a steep learning curve as you get involved in immunology

discussions. So, be prepared to be overwhelmed with the amount of

information that is going to be thrown at you in the next few weeks.

Let's start with some good news. There's a lot of kids that start out

life and then somewhere about the age of 2, their own immune system

decides to kick in and take off and they live happily ever after. Also,

some families on this list have seen their kids just gradually improve

throughout early childhood and get healthier without intervention.

But at 2 years of age, we begin to worry when certain things haven't

happened. Having low normal numbers is not bad in itself. But the

clinical picture may indicate that not only are her numbers low, but

also, she's not building the proper protection that her body needs to

fight germs. So, one of the first things that the immunologist is going

to order (if your pediatrician hasn't already) is titers to

vaccinations. When she was vaccinated, did her body build protection?

That's the main question. Often if the numbers indicate that she did

not build adequate protection, they will re-vaccinate her now that she's

a little older and maybe her body will build them now. So, the first

thing I want to warn you is that it's going to take a while to get all

the answers.

Secondly, I hope that you will let us know how your visit with your

immunologist goes. We'll try to answer your questions and we'll be

encouraging you to establish a really good relationship with your

immunologist. Unfortunately there are some flaky doctors out there and

we're not afraid to tell you if the information you are getting is not

consistent with the latest research. That's the great part about having

so many moms on this list -- we generally know what's out there!

I'm really encouraged that your pediatrician ran the proper tests and

got you started checking this out so early. Makes me think you are in

good hands.

Also, I would like to encourage you to call the Immune Deficiency

Foundation and ask them to send you any information they can including

their Patient and Family Handbook. It's free of charge and that number

is 1-800-296-4433.

And the best part about this group is when we get that e-mail that says,

" been there, done that -- you'll live -- just cry for a while and it

will get better. "

So, welcome, know that every single one of us has stood in your shoes

and we all remember that " hope " that there's something that can be done

and that " terror " of not knowing what.

I'll try to answer your questions:

1. Are any of your children on the lowest level of normal? Did any

> of you get second opinions?

Like I said above, low normals are not that bad -- but it's a symptom

that maybe she's not building all the protection she needs. These blood

tests are pretty standardized. I'm sure the immunologist will want to

draw more blood and see if that one blood draw was a " fluke " . But, the

immunologist is going to want to run more blood tests to check out

things more thoroughly -- and that will take time. After you meet with

the immunologist and you hear his/her strategy, we'll try to help you

judge whether that's a good strategy or not and you can compare our

comments to your own feelings and then decide if you need another

opinion. But it's generally a good idea to just work with one doctor at

a time until you find out what exactly you are dealing with. There are

many aspects of the immune system that need to be checked out.

> 2. How have your doctors strengthened your child(ren)'s immune

> system(s)? Would you suspect that the doctors could use the same

> methods for us?

If it turns out that is low in IgA your doctor may recommend

prophylactic antibiotic -- taking preventative antibiotics. Many of our

kids end up needing IgG replacement. Many of our kids do IV's of

gammaglobulin once every 3-4 weeks and some families do Sub-Q of

gammaglobulin which is a method you can do at home with treatment once a

week. But, let's wait and see what needs before you cross that

bridge! You are still quite a ways away from that because we don't know

yet what's going on. But, if it turns out that that is necessary,

you'll see a big difference in her infection rate once it's started.

One thing I want to encourage you NOT to do -- is to try over the

counter remedies that say they " improve the immune system " . Those might

be okay for someone with a normal immune system, but some of those

actually cause problems for people with weak immune systems -- so until

you get a diagnosis -- I would stay on the safe side.

> 3. What questions should we ask the doctors?

Anything that comes to your mind!!!! I do recommend that you make a

list with your most important questions at the top. That way if you

only have time for 3 questions -- it's the 3 biggest ones! But, go

into this appointment knowing that you won't get a lot of answers --

what you'll get is him/her ordering a lot of different tests and telling

you that they'll discuss the results of those tests at the next

appointment.

There are so many possibilities at this point, if the doctor were to

explain all the possible outcomes -- you would be more confused than

when you went in -- so try to relax and plan for it to take a while to

sort out.

One of the best things you can do is document the infections, # of trips

to doctor's office, etc. This will give the immunologist the clinical

picture of 's life and may give him clues on where to start looking.

Best wishes to you. I will be praying especially for you on Wednesday

-- unless you object. But keep in mind that is young and he may

feel that just treating her infections agressively and waiting and

watching is the best policy at this point. They made my daughter wait 6

months to redo the tests and make sure that the numbers were not just

off. I would insist on titer testing if they have not done that.

Hope that helps, God bless you!

In His service,

dale

[Guest guest]

Dale,

Thank you so much for taking time to be so thorough in welcoming me

to this board and readying me for the path ahead. I must say,

though, that the path looks similar to the one we've been on: lots

more trips to the doctor, documenting, and waiting to see if things

get better. However, now I feel like there may be some answers on

the horizon and a direction.

I will certainly keep you posted on Wednesday's visit. And, yes,

please pray. Faith is all we have in this life when its all said and

done.

Thanks again!!!!

Sincerely,

Jodi

>

> First of all welcome Jodi, to our group.

>

> There's a steep learning curve as you get involved in immunology

> discussions. So, be prepared to be overwhelmed with the amount of

> information that is going to be thrown at you in the next few weeks.

>

> Let's start with some good news. There's a lot of kids that start

out

> life and then somewhere about the age of 2, their own immune system

> decides to kick in and take off and they live happily ever after.

Also,

> some families on this list have seen their kids just gradually

improve

> throughout early childhood and get healthier without intervention.

>

> But at 2 years of age, we begin to worry when certain things

haven't

> happened. Having low normal numbers is not bad in itself. But the

> clinical picture may indicate that not only are her numbers low,

but

> also, she's not building the proper protection that her body needs

to

> fight germs. So, one of the first things that the immunologist is

going

> to order (if your pediatrician hasn't already) is titers to

> vaccinations. When she was vaccinated, did her body build

protection?

> That's the main question. Often if the numbers indicate that she

did

> not build adequate protection, they will re-vaccinate her now that

she's

> a little older and maybe her body will build them now. So, the

first

> thing I want to warn you is that it's going to take a while to get

all

> the answers.

>

> Secondly, I hope that you will let us know how your visit with your

> immunologist goes. We'll try to answer your questions and we'll be

> encouraging you to establish a really good relationship with your

> immunologist. Unfortunately there are some flaky doctors out there

and

> we're not afraid to tell you if the information you are getting is

not

> consistent with the latest research. That's the great part about

having

> so many moms on this list -- we generally know what's out there!

>

> I'm really encouraged that your pediatrician ran the proper tests

and

> got you started checking this out so early. Makes me think you are

in

> good hands.

>

> Also, I would like to encourage you to call the Immune Deficiency

> Foundation and ask them to send you any information they can

including

> their Patient and Family Handbook. It's free of charge and that

number

> is 1-800-296-4433.

>

> And the best part about this group is when we get that e-mail that

says,

> " been there, done that -- you'll live -- just cry for a while and

it

> will get better. "

>

> So, welcome, know that every single one of us has stood in your

shoes

> and we all remember that " hope " that there's something that can be

done

> and that " terror " of not knowing what.

>

> I'll try to answer your questions:

>

> 1. Are any of your children on the lowest level of normal? Did

any

> > of you get second opinions?

>

> Like I said above, low normals are not that bad -- but it's a

symptom

> that maybe she's not building all the protection she needs. These

blood

> tests are pretty standardized. I'm sure the immunologist will want

to

> draw more blood and see if that one blood draw was a " fluke " . But,

the

> immunologist is going to want to run more blood tests to check out

> things more thoroughly -- and that will take time. After you meet

with

> the immunologist and you hear his/her strategy, we'll try to help

you

> judge whether that's a good strategy or not and you can compare our

> comments to your own feelings and then decide if you need another

> opinion. But it's generally a good idea to just work with one

doctor at

> a time until you find out what exactly you are dealing with. There

are

> many aspects of the immune system that need to be checked out.

>

>

> > 2. How have your doctors strengthened your child(ren)'s immune

> > system(s)? Would you suspect that the doctors could use the same

> > methods for us?

>

> If it turns out that is low in IgA your doctor may recommend

> prophylactic antibiotic -- taking preventative antibiotics. Many

of our

> kids end up needing IgG replacement. Many of our kids do IV's of

> gammaglobulin once every 3-4 weeks and some families do Sub-Q of

> gammaglobulin which is a method you can do at home with treatment

once a

> week. But, let's wait and see what needs before you cross

that

> bridge! You are still quite a ways away from that because we don't

know

> yet what's going on. But, if it turns out that that is necessary,

> you'll see a big difference in her infection rate once it's started.

> One thing I want to encourage you NOT to do -- is to try over the

> counter remedies that say they " improve the immune system " . Those

might

> be okay for someone with a normal immune system, but some of those

> actually cause problems for people with weak immune systems -- so

until

> you get a diagnosis -- I would stay on the safe side.

>

> > 3. What questions should we ask the doctors?

>

> Anything that comes to your mind!!!! I do recommend that you make

a

> list with your most important questions at the top. That way if

you

> only have time for 3 questions -- it's the 3 biggest ones! But,

go

> into this appointment knowing that you won't get a lot of answers --

> what you'll get is him/her ordering a lot of different tests and

telling

> you that they'll discuss the results of those tests at the next

> appointment.

>

> There are so many possibilities at this point, if the doctor were

to

> explain all the possible outcomes -- you would be more confused

than

> when you went in -- so try to relax and plan for it to take a while

to

> sort out.

>

> One of the best things you can do is document the infections, # of

trips

> to doctor's office, etc. This will give the immunologist the

clinical

> picture of 's life and may give him clues on where to start

looking.

>

> Best wishes to you. I will be praying especially for you on

Wednesday

> -- unless you object. But keep in mind that is young and

he may

> feel that just treating her infections agressively and waiting and

> watching is the best policy at this point. They made my daughter

wait 6

> months to redo the tests and make sure that the numbers were not

just

> off. I would insist on titer testing if they have not done that.

>

>

> Hope that helps, God bless you!

> In His service,

> dale

>

[Guest guest]

Thanks, Cassie!!!

>

> First of all let me say welcome to the group. I will address each

issue

> as i can.

>

> >

> > 1. Are any of your children on the lowest level of normal? Did

any

> > of you get second opinions? Yes , who is 8 yrs old now,

has

> > always been on the borderlinish deffiecency or on the low end of

> > normal. I have not officially gotten a second opinion but by

default

> > because of moving to a different location. The newest tests also

> > revealed the lowishness of his immune study, we are talking more

than

> > 200 points below normal on the IgG levels.

> >

> > 2. How have your doctors strengthened your child(ren)'s immune

> > system(s)? Would you suspect that the doctors could use the same

> > methods for us? The only thing that has kept the inflamation away

is

> > being on long term clarythromicin, antibiotic, therapy. He has

had

> > numerous ear and sinus infections. He is working on his 3rd set

of

> > tubes and he also don't have his adnoids since they came out with

the

> > second set of tubes. He then started with the sinus issues and

the

> > only thing that has worked is what was said previously, not even

> > surgery or IV antibiotics got rid of it completely. We have now

> > started what is called IVIG therapy which is giving the IgG by iv

> > route to boost the immune system. He has only had one infusion of

that

> > so I can't really tell yet if it works but I am thinking that it

is

> > working, will post about it later.

> >

> > 3. What questions should we ask the doctors? Not sure what

questions

> > to ask but am sure that someone here can help you with that one.

>

> Hope I have helped some.

> Cassie

>

>

>

>

[Guest guest]

Jodi, Welcome to the group! I recently joined and can tell you that

you will come to find this as a great source of encouragement and will

find a wealth of information to be had. My son, Cole, just turned 3

and we are still in the beginning stages of diagnosis. His journey

sounds very similar to 's. He was diagnosed in October, been on

a profalatic dose of antibiotics since then and has suffered from

breakthrough infections since December. We return to the immuno in

two weeks for a reevalutation and I am considering requesting IVIG or

SCIG treatment for him since he remained sick most of the winter in

spite of the antibiotic treatment. Dale is right, this is a steep

learning curve. Try to relax and enjoy your child as the wonderful

person that she is. Sometimes it is so difficult to " get past " the

disease and remember that they are still a healthy child inside

underneath it all. This group should be able to provide you with some

wonderful insight and support. WELCOME!!!

-Rogena (Mom to 4 boys, including Cole -IgA & IgG Subclass Def, GERD,

possible Celiac)

[Guest guest]

Jodi,

Welcome to the group! I hope you find as much help here as I have,

I'm sure you will! I too am fairly new here. I have a 14 month old

who is on the road to diagnosis and treatment, as you are. It is

frustrating and involves a lot of waiting! But I will say this, if

you feel overwhelmed, which you will, post question after question.

All of these moms/dads are wonderful about answering, and reanswering

questions. The downside of this whole process is that it is slow,

involves a lot of waiting for test results etc. But you are on the

right track. I would just encourage you to ask the doctors what they

can do for your daughter in the mean time. A daily antibiotic maybe?

Or just directions to her primary to give antibiotics as soon as

something is brewing, so it doesn't get too bad? Discuss the options

with them. It sounds like she has suffered enough! Good luck to you,

let us know how it goes on Wednesday!

mom to Ana, 14 mo, IgG def, Failure to thrive and ???