Help! Two different drs say different things

[Guest guest]

I am at my wits end. My daughter is always sick and feeling terrible. Her igg

level is around 430 always and all her subclasses are low. She had a great

antibody response and her b cells are normal. She also has slightly low platelet

count consistantly. One dr. wants to do trial ivig infusions for a year. The

other dr. says there is nothing wrong with her immune system. Anyone have any

advice? This has been a 3 year ordeal.

From: Pat <pat_pnrtransport@...>

Subject: Blisters on the toes

Date: Sunday, January 31, 2010, 10:48 PM

 

My daughter (14yr) has had her 5th infusion and three days after started getting

blisters on her toes. We had this problem when she was getting her infusions

when she was 5yrs old. She had blisters on her hands and feet that got real bad.

We quit the infusions then. But had to start back up last year. Was wondering if

anyone else has had this problem. She is on Gamunex 20. As the month as gone by

the blisters are getting worse. She has her next infusion on 2/5/10 hoping they

don't get worse. Learning new things every day.

I see alot of post on here where alot of you get the lab results back yourselves

was wondering how I can go about getting them from my Dr's?

They were suppose to draw labs at her last infusion. But don't think they drew

what was ordered. They had a hard time getting a good vein.

[Guest guest]

I'm not sure I would go with the IVIG without knowing for sure that she has an

immune disorder.  We have never had those infusions yet, but I hear they are

hard ont he kids.  However, with the information you have provided, I would not

necessarily believe the doctor that says her immune system is fine.  My

daughter has a confirmed immune disorder, but has never been sick enough to do

IVIG treatments yet.  So, I believe they can have problems with their immune

systems, but still not be sick enough for IVIG.  Do you have the option of

seeing a 3rd doctor?  I know it's ahuge pain in the butt to go through this

whole process, but once you know for sure that you have a concrete answer, you

will feel a lot better.  Just my two cents worth.

 

Roach

Mother of Hannah (2) Hyper Ige Syndrome

Psalm 145:5  I will meditate on your majestic, glorious splendor and your

wonderful miracles.

From: Pat <pat_pnrtransport>

Subject: Blisters on the toes

groups (DOT) com

Date: Sunday, January 31, 2010, 10:48 PM

 

My daughter (14yr) has had her 5th infusion and three days after started getting

blisters on her toes. We had this problem when she was getting her infusions

when she was 5yrs old. She had blisters on her hands and feet that got real bad.

We quit the infusions then. But had to start back up last year. Was wondering if

anyone else has had this problem. She is on Gamunex 20. As the month as gone by

the blisters are getting worse. She has her next infusion on 2/5/10 hoping they

don't get worse. Learning new things every day.

I see alot of post on here where alot of you get the lab results back yourselves

was wondering how I can go about getting them from my Dr's?

They were suppose to draw labs at her last infusion. But don't think they drew

what was ordered. They had a hard time getting a good vein.

[Guest guest]

Thanks for the advice. We've seen 2 allergist/immunologist. Do you think a

hematolgist would be beneficial? Sorry you have a sick little one. My daughter

is 13.

From: Pat <pat_pnrtransport>

Subject: Blisters on the toes

groups (DOT) com

Date: Sunday, January 31, 2010, 10:48 PM

 

My daughter (14yr) has had her 5th infusion and three days after started getting

blisters on her toes. We had this problem when she was getting her infusions

when she was 5yrs old. She had blisters on her hands and feet that got real bad.

We quit the infusions then. But had to start back up last year. Was wondering if

anyone else has had this problem. She is on Gamunex 20. As the month as gone by

the blisters are getting worse. She has her next infusion on 2/5/10 hoping they

don't get worse. Learning new things every day.

I see alot of post on here where alot of you get the lab results back yourselves

was wondering how I can go about getting them from my Dr's?

They were suppose to draw labs at her last infusion. But don't think they drew

what was ordered. They had a hard time getting a good vein.

[Guest guest]

I do think a hematologist would be helpful.  We actually started with an

allergist/immunologist, and they referred us to a pediatric infectious disease

doc.  He made contact with a doctor at Duke University who is an expert on

Hannah's particular syndrome.  And then from there we were referred to a

hematologist/oncologist that is about an hour and a half away from us.  He is

the one that contacted a lab in New York that did genetic testing to see if

Hannah had this syndrome.  The testing was even free, because they used it as

research.  Sorry, I had forgotten that he was a hematologist.  Currently, we

still see our infectious disease doc, our allergist/immunologist, and then an

immunologist in Iowa City that knows a lot about her syndrome.  We see the doc

in Iowa City only once a year, because Hannah is doing good right now.  The

key, I think, is that if you honestly believe your child has an immune disorder,

then keep persuing doctors until you

get an answer that you are comfortable with.  Immune disorders are very hard

to diagnose and are missed quite often.  We were blessed enough to get our

answers VERY quickly in comparison to a lot of other stories I have heard.  But

even with that being said, we still had to push and push for answers when our

baby had been on 7 different antibiotics by the time she was 5 months old, and

they weren't taking care of the problem.  Honestly, it's by the grace of God

that we finally got our answer.  I hope that you will get one soon too.

Psalm 145:5  I will meditate on your majestic, glorious splendor and your

wonderful miracles.

From: Pat <pat_pnrtransport>

Subject: Blisters on the toes

groups (DOT) com

Date: Sunday, January 31, 2010, 10:48 PM

 

My daughter (14yr) has had her 5th infusion and three days after started getting

blisters on her toes. We had this problem when she was getting her infusions

when she was 5yrs old. She had blisters on her hands and feet that got real bad.

We quit the infusions then. But had to start back up last year. Was wondering if

anyone else has had this problem. She is on Gamunex 20. As the month as gone by

the blisters are getting worse. She has her next infusion on 2/5/10 hoping they

don't get worse. Learning new things every day.

I see alot of post on here where alot of you get the lab results back yourselves

was wondering how I can go about getting them from my Dr's?

They were suppose to draw labs at her last infusion. But don't think they drew

what was ordered. They had a hard time getting a good vein.

[Guest guest]

I would encourage you to check in with a major university medical center to have

another review of her system. It is possible it is something else. Generally the

function of the system is more important than the numbers. But.... there could

be other issues with allergies, her sinuses etc that are making her sick. I do

not have enough info to give you a full opinion but clearly you have two

conflicting views so you need to keep looking to come up with an appropriate

plan for her. I am sure you are very frustrated and I can surely understand

that. The important thing is to protect her organs from infection and to improve

quality of life no matter what the treatment may be.

BARBIE

________________________________

From: Roach <kmr7275@...>

Sent: Sun, January 31, 2010 3:29:56 PM

Subject: Re: Help! Two different drs say different things

I'm not sure I would go with the IVIG without knowing for sure that she has an

immune disorder. We have never had those infusions yet, but I hear they are

hard ont he kids. However, with the information you have provided, I would not

necessarily believe the doctor that says her immune system is fine. My daughter

has a confirmed immune disorder, but has never been sick enough to do IVIG

treatments yet. So, I believe they can have problems with their immune systems,

but still not be sick enough for IVIG. Do you have the option of seeing a 3rd

doctor? I know it's ahuge pain in the butt to go through this whole process,

but once you know for sure that you have a concrete answer, you will feel a lot

better. Just my two cents worth.

Roach

Mother of Hannah (2) Hyper Ige Syndrome

Psalm 145:5 I will meditate on your majestic, glorious splendor and your

wonderful miracles.

From: Pat <pat_pnrtransport>

Subject: Blisters on the toes

groups (DOT) com

Date: Sunday, January 31, 2010, 10:48 PM

My daughter (14yr) has had her 5th infusion and three days after started getting

blisters on her toes. We had this problem when she was getting her infusions

when she was 5yrs old. She had blisters on her hands and feet that got real bad.

We quit the infusions then. But had to start back up last year. Was wondering if

anyone else has had this problem. She is on Gamunex 20. As the month as gone by

the blisters are getting worse. She has her next infusion on 2/5/10 hoping they

don't get worse. Learning new things every day.

I see alot of post on here where alot of you get the lab results back yourselves

was wondering how I can go about getting them from my Dr's?

They were suppose to draw labs at her last infusion. But don't think they drew

what was ordered. They had a hard time getting a good vein.

[Guest guest]

I would go with the dr who wants to trial IVIG. I have three kids on it,

initially we " trialed " it to see if it would help.....and it really did. There

were a few initial hiccups trying to find the right rate, dose and premends but

once those were ironed out I would not want to go back to the way it was before.

My kids have been on IVIG for four yrs almost and life for them is so much

better.

You already know what her quality of life is w/o IVIG, why not try it out and

see if she gets better on it?

valarie

>

> From: Pat <pat_pnrtransport>

> Subject: Blisters on the toes

> groups (DOT) com

> Date: Sunday, January 31, 2010, 10:48 PM

>

>  

>

> My daughter (14yr) has had her 5th infusion and three days after started

getting blisters on her toes. We had this problem when she was getting her

infusions when she was 5yrs old. She had blisters on her hands and feet that got

real bad. We quit the infusions then. But had to start back up last year. Was

wondering if anyone else has had this problem. She is on Gamunex 20. As the

month as gone by the blisters are getting worse. She has her next infusion on

2/5/10 hoping they don't get worse. Learning new things every day.

> I see alot of post on here where alot of you get the lab results back

yourselves was wondering how I can go about getting them from my Dr's?

> They were suppose to draw labs at her last infusion. But don't think they drew

what was ordered. They had a hard time getting a good vein.

>

>

[Guest guest]

I would have to agree with osdbmom as far as IVIG. My daughter just started it

in October but the most that she has been sick since then is an itchy throat

this week. Besides that she is doing great. She has been in the best health of

her life. She gets a 3-4 hour transfusion once a month and is hyper as soon as

its over like she has been transfused with pure energy. She feels great

immediatly afterwards and is ready to be back at school the next morning with no

problem. It seems to me that if one of your doctors is recommending IVIG

transfusions then at least give them a try. I learned through everything that it

takes time for them to work. But after 3 months or so you should see an

improvement at least of some sort. In Sept my babys (8 yrs old) igg was 380 and

last month when they drew her she was 755. I almost couldnt believe it myself.

From: osdbmom <osdbmom@...>

Subject: Re: Help! Two different drs say different things

Date: Wednesday, February 3, 2010, 9:51 AM

 

I would go with the dr who wants to trial IVIG. I have three kids on it,

initially we " trialed " it to see if it would help.....and it really did. There

were a few initial hiccups trying to find the right rate, dose and premends but

once those were ironed out I would not want to go back to the way it was before.

My kids have been on IVIG for four yrs almost and life for them is so much

better.

You already know what her quality of life is w/o IVIG, why not try it out and

see if she gets better on it?

valarie

>

> From: Pat <pat_pnrtransport>

> Subject: Blisters on the toes

> groups (DOT) com

> Date: Sunday, January 31, 2010, 10:48 PM

>

>  

>

> My daughter (14yr) has had her 5th infusion and three days after started

getting blisters on her toes. We had this problem when she was getting her

infusions when she was 5yrs old. She had blisters on her hands and feet that got

real bad. We quit the infusions then. But had to start back up last year. Was

wondering if anyone else has had this problem. She is on Gamunex 20. As the

month as gone by the blisters are getting worse. She has her next infusion on

2/5/10 hoping they don't get worse. Learning new things every day.

> I see alot of post on here where alot of you get the lab results back

yourselves was wondering how I can go about getting them from my Dr's?

> They were suppose to draw labs at her last infusion. But don't think they drew

what was ordered. They had a hard time getting a good vein.

>

>

[Guest guest]

Go with what you believe in your gut to be right. I did not believe my

first immunologist was right about his diagnosis and after a year of him

waiting to see, and her continually be so sick and admitted to the hospital

over and over, I saw a second doctor who diagnosed her with CVID. Her titers

were only 2 of 14 protective, HIB was low. IgG had fallen from the end of

November check at 418 to January 14th check to 378, and all but one IgG

subclass was low. And she is IgA deficient.

Now that we are AGAIN sitting in the hospital with another infection and

also now has a port, I'm all ready to try some immune therapy for her.

HUGS!!!

Mom to Reiley 3.5 years old/unspecified metabolic syndrome/CVID

On Wed, Feb 3, 2010 at 8:51 AM, osdbmom <osdbmom@...> wrote:

>

>

> I would go with the dr who wants to trial IVIG. I have three kids on it,

> initially we " trialed " it to see if it would help.....and it really did.

> There were a few initial hiccups trying to find the right rate, dose and

> premends but once those were ironed out I would not want to go back to the

> way it was before. My kids have been on IVIG for four yrs almost and life

> for them is so much better.

> You already know what her quality of life is w/o IVIG, why not try it out

> and see if she gets better on it?

>

> valarie

>

>

> >

> > From: Pat <pat_pnrtransport>

> > Subject: Blisters on the toes

> > groups (DOT) com

> > Date: Sunday, January 31, 2010, 10:48 PM

> >

> > Â

> >

> > My daughter (14yr) has had her 5th infusion and three days after started

> getting blisters on her toes. We had this problem when she was getting her

> infusions when she was 5yrs old. She had blisters on her hands and feet that

> got real bad. We quit the infusions then. But had to start back up last

> year. Was wondering if anyone else has had this problem. She is on Gamunex

> 20. As the month as gone by the blisters are getting worse. She has her next

> infusion on 2/5/10 hoping they don't get worse. Learning new things every

> day.

> > I see alot of post on here where alot of you get the lab results back

> yourselves was wondering how I can go about getting them from my Dr's?

> > They were suppose to draw labs at her last infusion. But don't think they

> drew what was ordered. They had a hard time getting a good vein.

> >

> >