Tell me about hypogammaglobulinemia.......

[Guest guest]

Hi everyone. My name is Diane -- our 4 year old daughter, , was

diagnosed with hypogammaglobulinemia three days ago. Her IgG is 468,

which the immunologist indicates is " significantly low. " Although it

was relief to finally have a diagnosis, I'm also scared of what to

expect in the future.

We've had 2 visits with an immunologist, Dr. Shapiro in Plymouth,

MN. The initial visit was a discussion and bloodwork, and the second

visit was to discuss the diagnosis. We have a great feeling about

him, and believe he'll be a wonderful doctor for her. He's also

really good about talking to . He reassured us that she will

live a normal life with the right treatment. is now taking an

antibiotic 2xday, and will do so for the months of September through

May each year. He stated that IVIG will be a last resort.

Parents with children having this disorder -- do you have any " words

of wisdom " to share? Any thoughts, guidance, comments, anything,

would be greatly appreciated!

Thanks,

Diane

[Guest guest]

Hi, Diane,

I'm glad you have gotten some answers. Dr. Shapiro was able to get our dd

on a routine of IVIG and it has made a tremendous difference in her life.

But, keep monitoring your dd's health while on antibiotics. You won't need

to wait through months of illnesses before you get him to reevaluate this

plan of treatment. He also likes to be informed about every illness, so

call him...a lot in necessary. Welcome to the list!

Pam

wife to (17 years)

mother to , 10, Hannah, 8, Rebekah, 5, and Leah, 3

Tell me about hypogammaglobulinemia.......

Hi everyone. My name is Diane -- our 4 year old daughter, , was

diagnosed with hypogammaglobulinemia three days ago. Her IgG is 468,

which the immunologist indicates is " significantly low. " Although it

was relief to finally have a diagnosis, I'm also scared of what to

expect in the future.

[Guest guest]

Thanks for the information Pam! How long after the diagnosis of an

immune deficiency before your daughter started IVIG? Yes, Dr

Sharpiro did indicate he would remain very involved, which is a

relief after so many unexplained fevers with , and the brush

off " it's just a virus " from other doctors! Did your daughter find

any relief from infections through antibiotics?

> Hi, Diane,

>

> I'm glad you have gotten some answers. Dr. Shapiro was able to get

our dd

> on a routine of IVIG and it has made a tremendous difference in her

life.

> But, keep monitoring your dd's health while on antibiotics. You

won't need

> to wait through months of illnesses before you get him to

reevaluate this

> plan of treatment. He also likes to be informed about every

illness, so

> call him...a lot in necessary. Welcome to the list!

>

> Pam

> wife to (17 years)

> mother to , 10, Hannah, 8, Rebekah, 5, and Leah, 3

>

>

>

> Tell me about hypogammaglobulinemia.......

>

>

> Hi everyone. My name is Diane -- our 4 year old daughter, , was

> diagnosed with hypogammaglobulinemia three days ago. Her IgG is

468,

> which the immunologist indicates is " significantly low. " Although

it

> was relief to finally have a diagnosis, I'm also scared of what to

> expect in the future.

[Guest guest]

Diane,

We were diagnosed by a hematologist/oncologist who, unfortunately, believe

he knew how to treat this disease. We were diagnosed on Monday and started

treatment on Thursday. But the orders for IVIG included a high dose and a

high rate. Rebekah was sick, sick, sick afterwards. We were told to come

back for another treatment in 30 days, so, being good parents, we did. Same

thing: high dose, high rate, lots of side effects. In the meantime, I

found this group and IDF and got a referral to Dr. Shapiro.

Because of the rush to treatment, except for basic IgA and IgG levels, no

other bloodwork had been done. We had to discontinue treatment for 4 months

in order to test her properly. Oh, that hurt! Here we finally had a

diagnosis and a treatment, but we had to allow her to get sicker in order to

figure out what the real diagnosis was and how to treat it! We were parents

caught in the middle of two doctors, both well-intentioned, who had

radically different opinions on how to treat our dd. The hematologist

implied that we were abusing our dd by stopping treatment for further

testing. How's that for a guilt trip!!

Basically, as soon as we drew the bloodwork, we started treatment again, but

with the high dose, high rate and long intervals between treatments. After

a couple more awful treatments, we changed to the immunologist who was 250

miles away.

Our dd had absent IgA, low total IgG, very low-normal in all subclasses and

a deficiency in IgG3. She had made no response to any vaccine, had had

strong reactions to all vaccines and had a complement deficiency. It wasn't

a question of antibiotics working. She wasn't capable of making an antibody

on her own. Nope, we've never detected an antibody " made by Rebekah " ! So,

we went right to IVIG, although Dr. Shapiro had discussed us trying

antibiotics only to see if that worked. After the complete bloodwork, it

was clear that Rebekah has very little functioning bacterial immune system,

so antibiotics weren't an appropriate treatment anymore. She was also one

really sick puppy when she was diagnosed: not growing, not eating, not

getting out of bed, and not really living a life of any quality.

Fast forward two years: she's healthy, learning, happy and growing like a

weed.

If you feel that antibiotic treatment isn't sufficient because you continue

to see breakthrough infections, talk to Dr. Shapiro about changing the

course of treatment.

We've been blown off by doctors! We were actually told that we needed

parenting classes since we couldn't manage a sick and fussy child (this was

our 3rd child out of 4!). We were asked if we washed our hands regularly.

We were told to stop bringing her to the doctor's office since we were

making her sick by exposing her to so many sick kids. And my personal

favorite: your child is sick because you homeschool! Gotta love the

connection there! LOL

Pam

wife to (17 years)

mother to , 10, Hannah, 8, Rebekah, 5, and Leah, 3

Re: Tell me about hypogammaglobulinemia.......

Thanks for the information Pam! How long after the diagnosis of an

immune deficiency before your daughter started IVIG? Yes, Dr

Sharpiro did indicate he would remain very involved, which is a

relief after so many unexplained fevers with , and the brush

off " it's just a virus " from other doctors! Did your daughter find

any relief from infections through antibiotics?

[Guest guest]

Quoting Pam Mork <pmork@...>:

>

> Pam, This sounds quite similar to our situation with . I'm glad our

appt with Shapiro is in 2 1/2 weeks. LInda

>

>

>

> Diane,

>

>

>

> We were diagnosed by a hematologist/oncologist who, unfortunately, believe

>

> he knew how to treat this disease.  We were diagnosed on Monday and started

>

> treatment on Thursday.  But the orders for IVIG included a high dose and a

>

> high rate.  Rebekah was sick, sick, sick afterwards.  We were told to come

>

> back for another treatment in 30 days, so, being good parents, we did.  Same

>

> thing:  high dose, high rate, lots of side effects.  In the meantime, I

>

> found this group and IDF and got a referral to Dr. Shapiro.

>

>

>

> Because of the rush to treatment, except for basic IgA and IgG levels, no

>

> other bloodwork had been done.  We had to discontinue treatment for 4 months

>

> in order to test her properly.  Oh, that hurt!  Here we finally had a

>

> diagnosis and a treatment, but we had to allow her to get sicker in order to

>

> figure out what the real diagnosis was and how to treat it!  We were parents

>

> caught in the middle of two doctors, both well-intentioned, who had

>

> radically different opinions on how to treat our dd.  The hematologist

>

> implied that we were abusing our dd by stopping treatment for further

>

> testing.  How's that for a guilt trip!!

>

>

>

> Basically, as soon as we drew the bloodwork, we started treatment again, but

>

> with the high dose, high rate and long intervals between treatments.  After

>

> a couple more awful treatments, we changed to the immunologist who was 250

>

> miles away.

>

>

>

> Our dd had absent IgA, low total IgG, very low-normal in all subclasses and

>

> a deficiency in IgG3.  She had made no response to any vaccine, had had

>

> strong reactions to all vaccines and had a complement deficiency.  It wasn't

>

> a question of antibiotics working.  She wasn't capable of making an antibody

>

> on her own.  Nope, we've never detected an antibody " made by Rebekah " !  So,

>

> we went right to IVIG, although Dr. Shapiro had discussed us trying

>

> antibiotics only to see if that worked.  After the complete bloodwork, it

>

> was clear that Rebekah has very little functioning bacterial immune system,

>

> so antibiotics weren't an appropriate treatment anymore.  She was also one

>

> really sick puppy when she was diagnosed:  not growing, not eating, not

>

> getting out of bed, and not really living a life of any quality.

>

>

>

> Fast forward two years:  she's healthy, learning, happy and growing like a

>

> weed.

>

>

>

> If you feel that antibiotic treatment isn't sufficient because you continue

>

> to see breakthrough infections, talk to Dr. Shapiro about changing the

>

> course of treatment.

>

>

>

> We've been blown off by doctors!  We were actually told that we needed

>

> parenting classes since we couldn't manage a sick and fussy child (this was

>

> our 3rd child out of 4!).  We were asked if we washed our hands regularly.

>

> We were told to stop bringing her to the doctor's office since we were

>

> making her sick by exposing her to so many sick kids.  And my personal

>

> favorite:  your child is sick because you homeschool!  Gotta love the

>

> connection there! LOL

>

>

>

> Pam

>

> wife to (17 years)

>

> mother to , 10, Hannah, 8, Rebekah, 5, and Leah, 3

>

>

>

>

>

>

>

> Re: Tell me about hypogammaglobulinemia.......

>

>

>

>

>

> Thanks for the information Pam!  How long after the diagnosis of an

>

> immune deficiency before your daughter started IVIG?  Yes, Dr

>

> Sharpiro did indicate he would remain very involved, which is a

>

> relief after so many unexplained fevers with , and the brush

>

> off " it's just a virus " from other doctors!  Did your daughter find

>

> any relief from infections through antibiotics?

>

>

>

>

>

>

>

>

>

> 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.

>

>

>

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