Re: 6 months old baby newly diagnosed with hypogammagobulinemia

[Guest guest]

I would question a dx at only 6 months old, I went round and round on this and

was firmly told by every Dr the very min age is 1 year and we only got it that

early because my older child had been dx'd with it so they figured it wasn't

transient. Now SCID they will dx as early as birth but this? Just out of

curiosity, do you or your husband have a history of any mental health issues?

Anxiety or depression or even something more severe? I have 2 CVID kids and its

looking like it was caused by a condition called Pyroluria which is a genetic

blood disorder that strips zinc and B6 out of the body and besides mental health

issues it causes a poor immune system due to lack of zinc. They go into

remission in as little as a month once proper treatment starts but the calling

card of Pyroluria is a family history of anxiety/depression to more serious

Bipolar/Sz. Most Dr's have not heard of it and will look at you like your nuts

if you ask but its real and it causes so many health problems. Thankfully you

can get the test done without your Dr if needed (its actually better this way as

the sample is very fragile and as we learned the hard way its often damaged in

transit when going though multiple labs to get to the lab that does the test.)

---- S <philippastannard@...> wrote:

> Hello... I am new here. Not really sure how this works, but I am looking for

answers. Our sweet 6 month old daughter was diagnosed with transient

hypogammaglobulinemia this past week, after being in the hospital with sepsis

for the second time (the first time was when she was 2 weeks old). We are

completely overwhelmed and heart broken. Still trying to process it all. From

what I understand, they tack on the transient part hoping that it will pass by

the time she reaches 3-6 years old. However, we will not know if it is actually

transient until it has passed.

>

> She had the gammaglbulin infusion before she left the hospital. Now that we

are home, she is (or appears) to be happy and healthy as any other 6 month

old... however we are paralyzed with fear about the possibility of her coming

down with another infection. We must wash our hands more than 30 times a day. As

she is starting to crawl, we are very worried about her crawling on the floor.

She puts everything she can get her hands on into her mouth.

>

> My question is this:

>

> How should we conduct our lives? We are scared stiff of leaving the house for

fear of catching a cold or flu from someone, then giving it to her. Taking her

out of the house has been out of the question... Should it be?

>

> Are their any guidelines for how to keep your house clean? How clean does our

house need to be? Do we need to clean our floors with bleach before she crawls

on them? every day? once a week? what are the best cleaning products to use?

>

> we have a cat and a dog who live inside.... is that ok?

>

> do we need to wash her hands after she pets them?

>

> if her stuffed animals fall on the floor, we have been washing and

disinfecting them. is this necessary?

>

> I'm sure I could go on and on.... but I guess I'm hoping that someone out

there will have some answers.....

>

> Thank you.

>

[Guest guest]

I would question a dx at only 6 months old, I went round and round on this and

was firmly told by every Dr the very min age is 1 year and we only got it that

early because my older child had been dx'd with it so they figured it wasn't

transient. Now SCID they will dx as early as birth but this? Just out of

curiosity, do you or your husband have a history of any mental health issues?

Anxiety or depression or even something more severe? I have 2 CVID kids and its

looking like it was caused by a condition called Pyroluria which is a genetic

blood disorder that strips zinc and B6 out of the body and besides mental health

issues it causes a poor immune system due to lack of zinc. They go into

remission in as little as a month once proper treatment starts but the calling

card of Pyroluria is a family history of anxiety/depression to more serious

Bipolar/Sz. Most Dr's have not heard of it and will look at you like your nuts

if you ask but its real and it causes so many health problems. Thankfully you

can get the test done without your Dr if needed (its actually better this way as

the sample is very fragile and as we learned the hard way its often damaged in

transit when going though multiple labs to get to the lab that does the test.)

---- S <philippastannard@...> wrote:

> Hello... I am new here. Not really sure how this works, but I am looking for

answers. Our sweet 6 month old daughter was diagnosed with transient

hypogammaglobulinemia this past week, after being in the hospital with sepsis

for the second time (the first time was when she was 2 weeks old). We are

completely overwhelmed and heart broken. Still trying to process it all. From

what I understand, they tack on the transient part hoping that it will pass by

the time she reaches 3-6 years old. However, we will not know if it is actually

transient until it has passed.

>

> She had the gammaglbulin infusion before she left the hospital. Now that we

are home, she is (or appears) to be happy and healthy as any other 6 month

old... however we are paralyzed with fear about the possibility of her coming

down with another infection. We must wash our hands more than 30 times a day. As

she is starting to crawl, we are very worried about her crawling on the floor.

She puts everything she can get her hands on into her mouth.

>

> My question is this:

>

> How should we conduct our lives? We are scared stiff of leaving the house for

fear of catching a cold or flu from someone, then giving it to her. Taking her

out of the house has been out of the question... Should it be?

>

> Are their any guidelines for how to keep your house clean? How clean does our

house need to be? Do we need to clean our floors with bleach before she crawls

on them? every day? once a week? what are the best cleaning products to use?

>

> we have a cat and a dog who live inside.... is that ok?

>

> do we need to wash her hands after she pets them?

>

> if her stuffed animals fall on the floor, we have been washing and

disinfecting them. is this necessary?

>

> I'm sure I could go on and on.... but I guess I'm hoping that someone out

there will have some answers.....

>

> Thank you.

>

[Guest guest]

Hi, Hugs! I know you are worried about your baby....how scary!  My son was sick

all the time like that....really the only times he wasn't ill was when we went

in " hermit " mode and went very few places...remember if anyone comes to our house

to visit, have them remove their shoes before stepping in the house, bottoms of

shoes are very  very dirty.....and they should wash their hands to remove

transient bacteria.

You may want to put a little sign up and point it out to visitors...don't worry

about offending anyone...true friends know you are caring about your baby.

Sepsis two times already?! Wow, I know you must be concerned.....Have they

talked about starting her on routine IVIG infusions?

Also, has she been checked for Neutropenia also? Neutrophils are

bacteria-fighting white blood cells....my son has a Combined Immune Deficiency

but he also has Chronic Neutropenia. So he gets routine bone marrow biopsies and

receives shots of Neupogen weekly.....between the two---the Neupogen and the IG

replacement infusions weekly, he is able to go places and be more a part of

life.

As more of her immune workup is done and unfolds, you'll get a better picture of

what to do and what to expect.

As for now, Don't go in crowds, no visitors with colds, check on the guidelines

for live vaccines...my son cannot receive any live vaccines.....and make sure

she is being worked up well to pinpoint which PID she has.

Keep us updated...hugs....sue

From: S <philippastannard@...>

Subject: 6 months old baby newly diagnosed with hypogammagobulinemia

Date: Sunday, December 11, 2011, 7:29 PM

 

Hello... I am new here. Not really sure how this works, but I am looking

for answers. Our sweet 6 month old daughter was diagnosed with transient

hypogammaglobulinemia this past week, after being in the hospital with sepsis

for the second time (the first time was when she was 2 weeks old). We are

completely overwhelmed and heart broken. Still trying to process it all. From

what I understand, they tack on the transient part hoping that it will pass by

the time she reaches 3-6 years old. However, we will not know if it is actually

transient until it has passed.

She had the gammaglbulin infusion before she left the hospital. Now that we are

home, she is (or appears) to be happy and healthy as any other 6 month old...

however we are paralyzed with fear about the possibility of her coming down with

another infection. We must wash our hands more than 30 times a day. As she is

starting to crawl, we are very worried about her crawling on the floor. She puts

everything she can get her hands on into her mouth.

My question is this:

How should we conduct our lives? We are scared stiff of leaving the house for

fear of catching a cold or flu from someone, then giving it to her. Taking her

out of the house has been out of the question... Should it be?

Are their any guidelines for how to keep your house clean? How clean does our

house need to be? Do we need to clean our floors with bleach before she crawls

on them? every day? once a week? what are the best cleaning products to use?

we have a cat and a dog who live inside.... is that ok?

do we need to wash her hands after she pets them?

if her stuffed animals fall on the floor, we have been washing and disinfecting

them. is this necessary?

I'm sure I could go on and on.... but I guess I'm hoping that someone out there

will have some answers.....

Thank you.

[Guest guest]

I am so sorry that your little girl has been so ill. And she is still so

young!

First, I am assuming that your daughter had all the testing done to

evaluate all the parts of her immune system. There are lots of good

resources on the web, including:

http://emedicine.medscape.com/article/888706-overview#a0199 and

http://primaryimmune.org/

There are some great topics on decreasing exposure to infection!:

http://www.immunedisease.com/living-with-pi/healthy-living/staying-healthy/infec\

tion.html

and pets:

http://www.immunedisease.com/living-with-pi/ask-the-pi-panel/families-and-pi.htm\

l

some pets are riskier, but we do have indoor dogs.

The best thing is that your daughter has had IVIG already! That means

that she is much better protected now I hope that the doctors plan to

give her monthly IVIG for awhile.

We all have to struggle with the balance between normalcy and protecting

our children from infection. We use lots of antibacterial gel (every room

of the house, plus our cars and all backpacks and purses!), and good

handwashing--I wash my hands all the time, but especially before

interacting with my son and fixing his food. We stay home a LOT in

winter. My son has multiple developmental issues and autism, which means

he still puts everything in his mouth, just as an infant does. Would I

wash her toys if she drops them on the floor at the doctor's office? yes.

Would I wash her toys after she drops them on the floor at home? Depends.

I would keep all shoes off in the house (no outside tracked-in germs), and

the floors where your daughter plays with her toys mopped or vacuumed

within reason--usually every couple of days unless there is extra foot

traffic (there is a line between cleanliness and obsession). That way,

she can play relatively in peace, without worrying about everything she

drops. I would keep people who are sick away from the house until they

are well.

For the specifics you ask, there is no right or wrong answer. Everyone

may tell you something different, so I will tell you what I do. I use a

bleach cleaner on my counter tops once every morning, and after fixing raw

meat. I only use bleach on my floors after there are obvious biological

spills (read: pet waste). I thoroughly clean my floors once a week, with

spot cleaning in between. I prefer a vinegar solution for cleaning my

floors, toys and regular kitchen clean-up (you can buy that, or mix it

homemade). http://www.ncbi.nlm.nih.gov/pubmed/9713753

It is less likely to be toxic if ingested, in my mind. I washed my toys

in rotation, in the dishwasher or in the vinegar solution once a week, a

few toys everyday, so as not to get overwhelmed with washing. Warning,

you can wash stuffed animals without batteries in the washing machine, and

air dry once a week, but they do get worn out faster. She will be " used

to " the regular everyday germs in your house, including the animals, so

you can be less cautious and more comfortable in your home unless someone

is sick. I would be very vigilant if you are somewhere else.

Hang in there! It is just going to take time for the immune workup to be

complete, and for you to have all the information about the extent of her

immune deficiency as she gets older. Kids grow so fast that you want to

be able to have time to relax and play with her, too Please try to

find a balance between keeping her healthy and taking care of yourself,

too.

Mindy, mom to seven special kids, including , 9, CVID, plus

neurological and autoimmune issues

> Hello... I am new here. Not really sure how this works, but I am looking

for answers. Our sweet 6 month old daughter was diagnosed with transient

hypogammaglobulinemia this past week, after being in the hospital with

sepsis for the second time (the first time was when she was 2 weeks old).

> We are completely overwhelmed and heart broken. Still trying to process

it

> all. From what I understand, they tack on the transient part hoping that

it will pass by the time she reaches 3-6 years old. However, we will not

know if it is actually transient until it has passed.

> She had the gammaglbulin infusion before she left the hospital. Now that

we are home, she is (or appears) to be happy and healthy as any other 6

month old... however we are paralyzed with fear about the possibility of

her coming down with another infection. We must wash our hands more than

30 times a day. As she is starting to crawl, we are very worried about her

> crawling on the floor. She puts everything she can get her hands on into

her mouth.

> My question is this:

> How should we conduct our lives? We are scared stiff of leaving the

house

> for fear of catching a cold or flu from someone, then giving it to her.

Taking her out of the house has been out of the question... Should it be?

> Are their any guidelines for how to keep your house clean? How clean

does

> our house need to be? Do we need to clean our floors with bleach before

she crawls on them? every day? once a week? what are the best cleaning

products to use?

> we have a cat and a dog who live inside.... is that ok?

> do we need to wash her hands after she pets them?

> if her stuffed animals fall on the floor, we have been washing and

disinfecting them. is this necessary?

> I'm sure I could go on and on.... but I guess I'm hoping that someone

out

> there will have some answers.....

> Thank you.

[Guest guest]

I am so sorry that your little girl has been so ill. And she is still so

young!

First, I am assuming that your daughter had all the testing done to

evaluate all the parts of her immune system. There are lots of good

resources on the web, including:

http://emedicine.medscape.com/article/888706-overview#a0199 and

http://primaryimmune.org/

There are some great topics on decreasing exposure to infection!:

http://www.immunedisease.com/living-with-pi/healthy-living/staying-healthy/infec\

tion.html

and pets:

http://www.immunedisease.com/living-with-pi/ask-the-pi-panel/families-and-pi.htm\

l

some pets are riskier, but we do have indoor dogs.

The best thing is that your daughter has had IVIG already! That means

that she is much better protected now I hope that the doctors plan to

give her monthly IVIG for awhile.

We all have to struggle with the balance between normalcy and protecting

our children from infection. We use lots of antibacterial gel (every room

of the house, plus our cars and all backpacks and purses!), and good

handwashing--I wash my hands all the time, but especially before

interacting with my son and fixing his food. We stay home a LOT in

winter. My son has multiple developmental issues and autism, which means

he still puts everything in his mouth, just as an infant does. Would I

wash her toys if she drops them on the floor at the doctor's office? yes.

Would I wash her toys after she drops them on the floor at home? Depends.

I would keep all shoes off in the house (no outside tracked-in germs), and

the floors where your daughter plays with her toys mopped or vacuumed

within reason--usually every couple of days unless there is extra foot

traffic (there is a line between cleanliness and obsession). That way,

she can play relatively in peace, without worrying about everything she

drops. I would keep people who are sick away from the house until they

are well.

For the specifics you ask, there is no right or wrong answer. Everyone

may tell you something different, so I will tell you what I do. I use a

bleach cleaner on my counter tops once every morning, and after fixing raw

meat. I only use bleach on my floors after there are obvious biological

spills (read: pet waste). I thoroughly clean my floors once a week, with

spot cleaning in between. I prefer a vinegar solution for cleaning my

floors, toys and regular kitchen clean-up (you can buy that, or mix it

homemade). http://www.ncbi.nlm.nih.gov/pubmed/9713753

It is less likely to be toxic if ingested, in my mind. I washed my toys

in rotation, in the dishwasher or in the vinegar solution once a week, a

few toys everyday, so as not to get overwhelmed with washing. Warning,

you can wash stuffed animals without batteries in the washing machine, and

air dry once a week, but they do get worn out faster. She will be " used

to " the regular everyday germs in your house, including the animals, so

you can be less cautious and more comfortable in your home unless someone

is sick. I would be very vigilant if you are somewhere else.

Hang in there! It is just going to take time for the immune workup to be

complete, and for you to have all the information about the extent of her

immune deficiency as she gets older. Kids grow so fast that you want to

be able to have time to relax and play with her, too Please try to

find a balance between keeping her healthy and taking care of yourself,

too.

Mindy, mom to seven special kids, including , 9, CVID, plus

neurological and autoimmune issues

> Hello... I am new here. Not really sure how this works, but I am looking

for answers. Our sweet 6 month old daughter was diagnosed with transient

hypogammaglobulinemia this past week, after being in the hospital with

sepsis for the second time (the first time was when she was 2 weeks old).

> We are completely overwhelmed and heart broken. Still trying to process

it

> all. From what I understand, they tack on the transient part hoping that

it will pass by the time she reaches 3-6 years old. However, we will not

know if it is actually transient until it has passed.

> She had the gammaglbulin infusion before she left the hospital. Now that

we are home, she is (or appears) to be happy and healthy as any other 6

month old... however we are paralyzed with fear about the possibility of

her coming down with another infection. We must wash our hands more than

30 times a day. As she is starting to crawl, we are very worried about her

> crawling on the floor. She puts everything she can get her hands on into

her mouth.

> My question is this:

> How should we conduct our lives? We are scared stiff of leaving the

house

> for fear of catching a cold or flu from someone, then giving it to her.

Taking her out of the house has been out of the question... Should it be?

> Are their any guidelines for how to keep your house clean? How clean

does

> our house need to be? Do we need to clean our floors with bleach before

she crawls on them? every day? once a week? what are the best cleaning

products to use?

> we have a cat and a dog who live inside.... is that ok?

> do we need to wash her hands after she pets them?

> if her stuffed animals fall on the floor, we have been washing and

disinfecting them. is this necessary?

> I'm sure I could go on and on.... but I guess I'm hoping that someone

out

> there will have some answers.....

> Thank you.

[Guest guest]

It can be difficult to fully test and interpret immune function in an infant,

but seeing a clinical immunologist would be my suggestion. I would want to make

sure they have completely ruled out the more serious immune deficiencies. A

really thorough workup will help you know what kind of precautions are needed.

Some kids are fine around pets, some are not, it just depends on the severity of

the immune deficiency. Also, don't be afraid to ask questions or get a second

opinion, it actually took us five specialists to get our kids diagnosed

correctly. One of my sons ended up having a more severe immune deficiency, he

had previously been misdiagnosed with a less severe one. Let us know if you need

more info. If you haven't already, check out the following websites:

primaryimmune.org

jmfworld.org

Take care,

(NEMO carrier)

Mom to Hayden (17-MBL Deficiency)

Evan (17-MBL Deficiency)

Conner (17-NEMO and MBL Deficiency; bone marrow transplant 8/17/07)

Kelsey (15-MBL Deficiency, IgG Subclass Deficiency and NEMO carrier)

Wife to (MBL Deficiency)

www.caringbridge.org/visit/smithkids

[Guest guest]

Thank you for everyones very helpful suggestions!

>

> Hello... I am new here. Not really sure how this works, but I am looking for

answers. Our sweet 6 month old daughter was diagnosed with transient

hypogammaglobulinemia this past week, after being in the hospital with sepsis

for the second time (the first time was when she was 2 weeks old). We are

completely overwhelmed and heart broken. Still trying to process it all. From

what I understand, they tack on the transient part hoping that it will pass by

the time she reaches 3-6 years old. However, we will not know if it is actually

transient until it has passed.

>

> She had the gammaglbulin infusion before she left the hospital. Now that we

are home, she is (or appears) to be happy and healthy as any other 6 month

old... however we are paralyzed with fear about the possibility of her coming

down with another infection. We must wash our hands more than 30 times a day. As

she is starting to crawl, we are very worried about her crawling on the floor.

She puts everything she can get her hands on into her mouth.

>

> My question is this:

>

> How should we conduct our lives? We are scared stiff of leaving the house for

fear of catching a cold or flu from someone, then giving it to her. Taking her

out of the house has been out of the question... Should it be?

>

> Are their any guidelines for how to keep your house clean? How clean does our

house need to be? Do we need to clean our floors with bleach before she crawls

on them? every day? once a week? what are the best cleaning products to use?

>

> we have a cat and a dog who live inside.... is that ok?

>

> do we need to wash her hands after she pets them?

>

> if her stuffed animals fall on the floor, we have been washing and

disinfecting them. is this necessary?

>

> I'm sure I could go on and on.... but I guess I'm hoping that someone out

there will have some answers.....

>

> Thank you.

>