Re: : New Member Introduction

Posted December 4, 2004 · December 4, 2004

-

We are in LA - who is your GI doc? We have a great guy in the Valley -

he was trained at UCLA, and diagnosed my kids with a fructose

intolerance over the phone after three visits with three Gi's with no

answers.

Where in LA are you? Where are you going to IVIG? Who is your Immuno??

Dayna Mom to three PID kids

Charlie, four, Low IgG, IgG subclass deficiency, NK cells? Antibody

deficiency, IVIG

Kate, Low IgA, IgG, and antibody deficiency, IVIG

Tommy Low IgA, IgG, IgG subclass deficiency, NK cells? IgM dropping?

Not on IVIG.

: New Member Introduction

Hi. I am new to this group and will tell you our brief (if that is

possible) story to date and ask a few questions. Our hope is that some

of you might be able to help us to learn about our daughter's " immune

irregularities " , and be a source of support, so that she can have the

best possible quality of life. We have learned, the hard way, that

doctors are not going to advocate for our daughter--and we don't want to

make any more mistakes in this regard.

la was born in 2001 in Florida and she was a perfect little angel.

By 7 mos of age, she stopped sleeping, stooling, and nursing. This was

followed by bloody/mucusy stools. Our docs told us not to worry.

At 11 months, she had her first major respiratory infection. The nurses

thought it might be RSV because she was in such bad shape. I took her

home and did the nebulizer, antibiotics, etc. but she was never the same

again. For the next year, I was homebound with her and breastfeeding

but she was always sick with respiratory and ear infections.

Then, she developed recurrent c.dif colitis (e.g., bloody stools with

104 fever) and we demanded (thanks to , Buddy's mom) an

immunological work-up. Studies showed: low Igs, subclass 1 and 4

deficiencies, no response to Prevnar but we were denied proper

treatment. 48 hours later fled to Los Angeles (where we now live) for

another opinion and the immno division chief drew a mess of blood and

started her on IVIG STAT.

Studies showed: low or deficient IgG, IgA, IgM, IgE, no T-cell function

to antigens, low T-cells numbers, no response to Prevnars. Then, we

learned that she had under-developed tonsillar and no adenoid tissue and

were referred to Dr. Buckley to check for milder forms of SCIDS. At

Duke, our daughter's T-cell function was upgraded to " variable " .

However, she became lymphopenic and her total T-cell numbers dropped.

Any thoughts, experiences, or insights are welcome. = )

Today, our three-year-old's immune " irregularities " are still under

investigation. Our immunologist says it could be THI or CVID or

something else...and it is so hard for us not to know because she

continues to have terrible GI distress. Nights are treacherous for her

and we are all so very tired. We have hit a wall with our GI doc.

Here are a few questions--sorry if you already addressed these.

1. Are any other children having GI symptoms? Motility? Pain?

Diarrhea? Fevers?

2. What might we be missing here, in the gut area?

3. Any recommendations for a good GI doc? We are willing to travel.

4. How do I know if my daughter has the capacity to mount a " normal "

fever? Her IgM is about 30 right now.

5. What are your thoughts and/or experiences with children having

underdeveloped lymphoid tissue?

Thanks so much. And, thanks Barb! The SCIDS group got us through the

Fall.

Warmly,

( " Karneymommy " ) mom to la with immune deficiency still

under investigation.

Posted December 5, 2004 · December 5, 2004

<>

> 2. What might we be missing here, in the gut area?

>

Hi,

Since you also mentioned the history of blood and mucous in the

stool along with the ongoing GI problems, I am wondering if both

celiac disease and cystic fibrosis work-ups have been done.

Good luck finding the right docs for your child.

Sandy

(Mom to Riley, age 13, selective antibody deficiency, asthma, IVIG)

Posted December 5, 2004 · December 5, 2004

- We were told that blood tests will not tell us anything about celiacs disease

because her IgA is undetectable. Endoscope/biopsy is the only way and we have

not done that yet.

- CF tests have not been done. I will discuss this with our doc. Thanks.

Other ideas?

treadinwater_2000 <sskapik@...> wrote:

<>

> 2. What might we be missing here, in the gut area?

>

Hi,

Since you also mentioned the history of blood and mucous in the

stool along with the ongoing GI problems, I am wondering if both

celiac disease and cystic fibrosis work-ups have been done.

Good luck finding the right docs for your child.

Sandy

(Mom to Riley, age 13, selective antibody deficiency, asthma, IVIG)

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

Posted December 5, 2004 · December 5, 2004

- We were told that blood tests will not tell us anything about celiacs disease

because her IgA is undetectable. Endoscope/biopsy is the only way and we have

not done that yet.

- CF tests have not been done. I will discuss this with our doc. Thanks.

Other ideas?

treadinwater_2000 <sskapik@...> wrote:

<>

> 2. What might we be missing here, in the gut area?

>

Hi,

Since you also mentioned the history of blood and mucous in the

stool along with the ongoing GI problems, I am wondering if both

celiac disease and cystic fibrosis work-ups have been done.

Good luck finding the right docs for your child.

Sandy

(Mom to Riley, age 13, selective antibody deficiency, asthma, IVIG)

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

Posted December 5, 2004 · December 5, 2004

Dayna, what does the NK deficiency mean to your kids???? 's is low and

now his other Immuno globins are dropping????? Do you have any

suggestions?????????

> Dayna Mom to three PID kids

>

> Charlie, four, Low IgG, IgG subclass deficiency, NK cells? Antibody

>

> deficiency, IVIG

>

> Kate, Low IgA, IgG, and antibody deficiency, IVIG

>

> Tommy Low IgA, IgG, IgG subclass deficiency, NK cells? IgM dropping?

>

> Not on IVIG.

>

Posted December 5, 2004 · December 5, 2004

Dayna, what does the NK deficiency mean to your kids???? 's is low and

now his other Immuno globins are dropping????? Do you have any

suggestions?????????

> Dayna Mom to three PID kids

>

> Charlie, four, Low IgG, IgG subclass deficiency, NK cells? Antibody

>

> deficiency, IVIG

>

> Kate, Low IgA, IgG, and antibody deficiency, IVIG

>

> Tommy Low IgA, IgG, IgG subclass deficiency, NK cells? IgM dropping?

>

> Not on IVIG.

>

Posted December 5, 2004 · December 5, 2004

-

Actually, I am going to try to pin my immuno down on this tomorrow when

we go for IVIG. We first saw it with , and now it's showing in

Charlie too. The doc did mention it could happen if they were fighting

an infection when the blood was drawn, but he didn't go past that. I

know very little about them - just that they are first responders

(natural killer cells).

It's been a crappy three weeks since our last IVIG - Kate has had

pneumonia, an ear infection and a sinus infection. Charlie has a sinus

infection. I'm hoping the next three weeks are better then these ones.

Dayna

RE: : New Member Introduction

Dayna, what does the NK deficiency mean to your kids???? 's is

low and

now his other Immuno globins are dropping????? Do you have any

suggestions?????????

> Dayna Mom to three PID kids

>

> Charlie, four, Low IgG, IgG subclass deficiency, NK cells? Antibody

>

> deficiency, IVIG

>

> Kate, Low IgA, IgG, and antibody deficiency, IVIG

>

> Tommy Low IgA, IgG, IgG subclass deficiency, NK cells? IgM dropping?

>

> Not on IVIG.

>

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

Posted December 5, 2004 · December 5, 2004

-

Actually, I am going to try to pin my immuno down on this tomorrow when

we go for IVIG. We first saw it with , and now it's showing in

Charlie too. The doc did mention it could happen if they were fighting

an infection when the blood was drawn, but he didn't go past that. I

know very little about them - just that they are first responders

(natural killer cells).

It's been a crappy three weeks since our last IVIG - Kate has had

pneumonia, an ear infection and a sinus infection. Charlie has a sinus

infection. I'm hoping the next three weeks are better then these ones.

Dayna

RE: : New Member Introduction

Dayna, what does the NK deficiency mean to your kids???? 's is

low and

now his other Immuno globins are dropping????? Do you have any

suggestions?????????

> Dayna Mom to three PID kids

>

> Charlie, four, Low IgG, IgG subclass deficiency, NK cells? Antibody

>

> deficiency, IVIG

>

> Kate, Low IgA, IgG, and antibody deficiency, IVIG

>

> Tommy Low IgA, IgG, IgG subclass deficiency, NK cells? IgM dropping?

>

> Not on IVIG.

>

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

Posted December 6, 2004 · December 6, 2004

Dayna, the heme/onc that I saw was really interested in what his NK cells

were. has recurrent herpes, and we can't get them to go dormant even on

acyclovir which is sensitive.....I think they are more for viral things...but

I'm just guessing. doesn't seem to have a bunch of bacterial things.

It seems like its the viral stuff that gets him into trouble. I'm hoping to

hear something later today or tomorrow from MPLS in regards to the biopsy,

then will call the heme back and see what he has to say about the labs thus

far......thanks for the reply.

Quoting fladfam <fladfam@...>:

>

> -

>

> Actually, I am going to try to pin my immuno down on this tomorrow when

>

> we go for IVIG. We first saw it with , and now it's showing in

>

> Charlie too. The doc did mention it could happen if they were fighting

>

> an infection when the blood was drawn, but he didn't go past that. I

>

> know very little about them - just that they are first responders

>

> (natural killer cells).

>

> It's been a crappy three weeks since our last IVIG - Kate has had

>

> pneumonia, an ear infection and a sinus infection. Charlie has a sinus

>

> infection. I'm hoping the next three weeks are better then these ones.

>

> Dayna

>

> RE: : New Member Introduction

>

> Dayna, what does the NK deficiency mean to your kids???? 's is

>

> low and

>

> now his other Immuno globins are dropping????? Do you have any

>

> suggestions?????????

>

> > Dayna Mom to three PID kids

>

> >

>

> > Charlie, four, Low IgG, IgG subclass deficiency, NK cells? Antibody

>

> >

>

> > deficiency, IVIG

>

> >

>

> > Kate, Low IgA, IgG, and antibody deficiency, IVIG

>

> >

>

> > Tommy Low IgA, IgG, IgG subclass deficiency, NK cells? IgM dropping?

>

> >

>

> > Not on IVIG.

>

> >

>

> >

>

> 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

>

Posted December 6, 2004 · December 6, 2004

In a message dated 12/4/2004 8:47:47 PM Pacific Standard Time,

dietdoc@... writes:

Nights are treacherous for her and we are all so very tired. We have hit a

wall with our GI doc.

Hi ,

You mentioned that you live in LA. Do you take la to Los Angeles

Children's?? If so, do you see Dr. Hate or another GI Doc??

On another note, welcome!!

Sandi, Mom to , age 11. Immune Deficiency, Tetrology of Fallot,

Pulmonary Valve transplant, Mitral valve stenosis, chronic ear, nose and throat

infections, asthma, severe allergies (including meds), Carnitine deficiency,

GERD,

suspected Di syndrome.

Posted December 6, 2004 · December 6, 2004

In a message dated 12/4/2004 8:47:47 PM Pacific Standard Time,

dietdoc@... writes:

Nights are treacherous for her and we are all so very tired. We have hit a

wall with our GI doc.

Hi ,

You mentioned that you live in LA. Do you take la to Los Angeles

Children's?? If so, do you see Dr. Hate or another GI Doc??

On another note, welcome!!

Sandi, Mom to , age 11. Immune Deficiency, Tetrology of Fallot,

Pulmonary Valve transplant, Mitral valve stenosis, chronic ear, nose and throat

infections, asthma, severe allergies (including meds), Carnitine deficiency,

GERD,

suspected Di syndrome.

Posted December 6, 2004 · December 6, 2004

We take her to UCLA for GI but are not making progress. Any suggestions are

welcome. Thanks.

sassykay59@... wrote:In a message dated 12/4/2004 8:47:47 PM Pacific

Standard Time,

dietdoc@... writes:

Nights are treacherous for her and we are all so very tired. We have hit a

wall with our GI doc.

Hi ,

You mentioned that you live in LA. Do you take la to Los Angeles

Children's?? If so, do you see Dr. Hate or another GI Doc??

On another note, welcome!!

Sandi, Mom to , age 11. Immune Deficiency, Tetrology of Fallot,

Pulmonary Valve transplant, Mitral valve stenosis, chronic ear, nose and throat

infections, asthma, severe allergies (including meds), Carnitine deficiency,

GERD,

suspected Di syndrome.

Posted December 6, 2004 · December 6, 2004

We take her to UCLA for GI but are not making progress. Any suggestions are

welcome. Thanks.

sassykay59@... wrote:In a message dated 12/4/2004 8:47:47 PM Pacific

Standard Time,

dietdoc@... writes:

Nights are treacherous for her and we are all so very tired. We have hit a

wall with our GI doc.

Hi ,

You mentioned that you live in LA. Do you take la to Los Angeles

Children's?? If so, do you see Dr. Hate or another GI Doc??

On another note, welcome!!

Sandi, Mom to , age 11. Immune Deficiency, Tetrology of Fallot,

Pulmonary Valve transplant, Mitral valve stenosis, chronic ear, nose and throat

infections, asthma, severe allergies (including meds), Carnitine deficiency,

GERD,

suspected Di syndrome.

Posted December 7, 2004 · December 7, 2004

:

Whenever anybody mentions diarrhea I always chime in with the possibility of

dairy intolerance. My children have had any or all of the following symptoms

with exposure to dairy (for my youngest, even touching it caused symptoms):

-small, transient rough rash on face

-diarrhea

-GERD (urping, spitting up, heartburn)

-eczema

In hindsight, our peds should have known this combination is classic dairy

reaction, but they didn't! I think there are a number of food

allergies/intolerances which can cause gut problems.

Also, my PID pumpkin tends to get what we can only imagine is a type of

colitis... she's had bloody, mucousy diarrhea but every stool culture in the

world

turned up negative. When docs had no clue we decided it was a colitis-like

reaction from frequent use of antibiotics and turned to probiotics to try to

resolve it. For whatever reason, the acidophilus we tried caused her to have

terrible GERD (it may have had a milk ingredient in it, will have to try a

different one), so we took her off and eventually her tummy calmed down.

There are certainly many other possibilities for gut problems, but I'm only

chiming in with the one I know about, I'll let others suggest possibilities

they have experience with.

Also, often gets an episode or two of diarrhea before the onset of a

bacterial infection such as ear, sinus or lung. Once in a while she'll have a

single vomit before onset.

also gets a few gastro viruses each year, but those are pretty easy to

spot as they usually start with vomiting (often vomiting yellow bile) and she

will be obviously feeling sick.

Good luck --

(mom to , age 5-1/2, dairy intolerant-related GERD -- currently

has polysaccharide antibody def, previously had transient IgG, IgA, t-cell &

other defs... and also to Kate, born 9/19/02, dairy intolerant)

Posted December 7, 2004 · December 7, 2004

Forgot to add one thing about the gut/diarrhea issues.

After had the bloody/mucousy stools, now she is having a problem where

she will often have a single episode of diarrhea after a greasy meal, such as

at a restaurant. We don't eat out often at all due to our finances/frugality,

but it seems like 100% of the last few meals have been spent with DH clumsily

packing up Kate and all our stuff while I spend 45 minutes in the restaurant

john with . Actually, I can no longer recall the number of times I've been

" trapped " in a public bathroom with her. I even remember one time (at least a

year ago, before the more recent tummy troubles) at Best Buy where she was

having sudden, painful diarrhea for over an hour (not exaggerating!), then we

cleaned up and headed for the exit, only to go RUNNING back for another 45

minute foray. I really should pack a book or to-do list or something in my purse

at

this point.

I'm thinking of this as colitis-like, because I had similar problems as a

kid, I remember terrible stomach cramps and diarrhea after buttery meals at Red

Lobster or large amounts of chocolate. I'll have to ask my mom what she

remembers about my diarrhea problems.

I recently tested normal for IgG, IgA and IgM, so the thought is I have no

PID, even though my illness history is a little suspect. I'm currently on ear

infection number three in three months, so and I are neck-and-neck in that

department. Makes me wonder about my pneumo abs, so I got a Pneumovax

yesterday hoping it may help.

(mom to , age 5-1/2, dairy intolerant-related GERD -- currently

has polysaccharide antibody def, previously had transient IgG, IgA, t-cell &

other defs... and also to Kate, born 9/19/02, dairy intolerant)

Posted December 7, 2004 · December 7, 2004

and all parents dealing with gut problems--

These are all good suggestions, thanks. My daughter has many of the symptoms

that you describe. I have a couple of questions, if you have a moment:

1. When did you start to notice that 's Igs and T-cell function were

improving? Was she on IVIG at the time?

2. How can you determine if there is a milk protein allergy if IgE is

undetectable? How did you figure this out?

2. Do you have any problems with the gut slowing down (infrequent stools)

before the infections or problems? My daughter has severe pain and vomits

(usually one time) and then stops stooling. Then, the diarrhea is wet with

mucus.

3. Our daughter also is very sensitive to antibiotics and even relapsed with

c.dif colitis after vancomycin! What do you do when needs antibiotics?

We used to give Dani antibiotics when she needed them but she handles them so

terribly that we have decided to homeschool her--to avoid intercurrent

infections during the winter.

Thanks. (mom to la: Low Igs, T-cell dysfunction, no adenoid

tissue, gut problems...though improved with IVIG)

bunneegirl@... wrote:

:

Whenever anybody mentions diarrhea I always chime in with the possibility of

dairy intolerance. My children have had any or all of the following symptoms

with exposure to dairy (for my youngest, even touching it caused symptoms):

-small, transient rough rash on face

-diarrhea

-GERD (urping, spitting up, heartburn)

-eczema

In hindsight, our peds should have known this combination is classic dairy

reaction, but they didn't! I think there are a number of food

allergies/intolerances which can cause gut problems.

Also, my PID pumpkin tends to get what we can only imagine is a type of

colitis... she's had bloody, mucousy diarrhea but every stool culture in the

world

turned up negative. When docs had no clue we decided it was a colitis-like

reaction from frequent use of antibiotics and turned to probiotics to try to

resolve it. For whatever reason, the acidophilus we tried caused her to have

terrible GERD (it may have had a milk ingredient in it, will have to try a

different one), so we took her off and eventually her tummy calmed down.

There are certainly many other possibilities for gut problems, but I'm only

chiming in with the one I know about, I'll let others suggest possibilities

they have experience with.

Also, often gets an episode or two of diarrhea before the onset of a

bacterial infection such as ear, sinus or lung. Once in a while she'll have a

single vomit before onset.

also gets a few gastro viruses each year, but those are pretty easy to

spot as they usually start with vomiting (often vomiting yellow bile) and she

will be obviously feeling sick.

Good luck --

(mom to , age 5-1/2, dairy intolerant-related GERD -- currently

has polysaccharide antibody def, previously had transient IgG, IgA, t-cell &

other defs... and also to Kate, born 9/19/02, dairy intolerant)

Posted December 7, 2004 · December 7, 2004

-

Have you ever tested her for fat malabsorption? I don't know how this is done

or the implications, though. So happy to hear that, despite all of 's

health related issues, and sensitive gut, she is has a relatively " normal " life.

Probably a good idea not to eat in restaurants often--due to food safety issues

and that delicate gut. = )