Re: GI problems with PID

[Guest guest]

In a message dated 5/18/2006 5:40:50 PM Central Standard Time,

smoot732000@... writes:

> My son also has many GI issues with bad reflux, still frequently

> vomits, and diarrhea for months at a time,and just has bad GI pain a

> lot

I know, I know, here goes again with her dairy info. I just want to

make sure everybody knows that a dairy intolerance can cause reflux, diarrhea,

eczema, facial rash, hives, among other things. My kids were both " intolerant "

to all dairy, including the remote sources like whey, casein, anything with

" lac " as part of the ingredient. That means not just lactose, but everything

dairy-derived. Pretty much most packaged food has some dairy ingredient. Our ped

was completely oblivious to all the signs -- he treated DD #1 for eczema, GERD,

diarrhea, bleeding diaper rash, all separately, never put all the symptoms

together, I had to research it and figure it out on my own. Incidentally, she

RAST tested negative to dairy " allergy " .

When DD #2 started grunting and groaning in the night as a newborn, then

popped out with the facial rash, diarrhea and eczema, I knew immediately what it

was. Ped would never have figured it out.

Okay, off my no-dairy soapbox!!!! Hope that helps somebody.

(mom to , age 7, dairy intolerant-related GERD -- currently has

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

defs... and also to Kate, age 3!, more dairy intolerant but very healthy!)

[Guest guest]

My daughter also has many GI problems. She had horrible reflux, then had the

Nissen Fundo, but now has more GI issues then before. She also has chronic

diarrhea and is cannot tolerate many different foods. I just spoke with a

motility doctor from Childrens Hospital of Wisconsin tonight (olivia is being

evaluated there) and he did tell me that GI issues and PID go hand in hand.

Olivia is going to be seeing Dr. Bill Grossman at CHOW and they did want to do

some testing, but as of right now Im unsure of what, I know one was a pancretic

stimulation test, he mentioned others, but I honestly cant remember right now.

He did mention that kids with PID can also have an overgrowth of bacteria in the

gut and we will be testing for that. Sorry I cant be of much help.

Olivia PID, and other chronic issues

smoot732000 <smoot732000@...> wrote: My son also has many GI issues

with bad reflux, still frequently

vomits, and diarrhea for months at a time,and just has bad GI pain a

lot. I have read many articles that have mentioned GI problems with

PID's. Are any of these problems able to be tested for? WHat kind of

GI problems do you see with PID's?

This forum is open to parents and caregivers of children diagnosed with a

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[Guest guest]

" What kind of GI problems do you see with PIDs "

Hi, .

My understanding is that GI and immune issues do go hand in hand (a mom --

sorry I can't remember who -- just posted this as well).

My daughter had classic GI symptoms that go with CVID (e.g., bacterial

overgrowth, motility disorder, and relapsing GI infections). I have been

posting about gut-immune issues for some time now (check the archives) and will

re-post my same old thoughts here for your convenience. Both constipation and

diarrhea are very common. The following post is about constipation, though:

" ...I don't have the answer for your particular situation but there are many

theories (e.g., mucosa damage, microflora imbalance, dependence on

antimicrobials, autoimmune, smooth muscle and/or nerve damage, allergies/food

intolerances, inflammatory problems, infectious disease, among other things

which are all possible with PIDers since they have a higher risk of most of

these things).

What we do know is that our kids are at a tremendous risk of GI problems -- I

think I read that as high as 60% have some GI problem. Many PIDers end up with

a GI specialist before realizing that the problem is really immune driven. It

is unfortunate that immunologists do not reliably screen for GI problems -- and

that GIs don't always screen for immune problems. The gut and the immune system

go hand in hand and medical literature supports this. "

The lucky PIDers have run of the mill GI issues that are caught early and life

goes on. But, this is not always the case and is very upsetting to search for

answers while your child is suffering.

Until we know more, the best thing to do is to try to deal with GI issues as

they arise. Don't let any GI doc minimize the problem. If you don't trust the

doc or are not getting relief -- find someone that will.

mom to CVIDer

[Guest guest]

Question...does anyone see Gastroparesis related to PID? our son has

Gastroparesis with likely is the cause of he GERD. But there were no

physical abnormalities to explain it.

Thanks!

--

Amy C.

Mom to Sebastian, 6 years - Asperger Syndrome, Asthma, Gastroparesis, GERD and

Allergies

Blow the Whistle on Asthma Walk - May 20, 2006

http://tinyurl.com/h5ycl

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Join PA Parents Advocacy Group

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[Guest guest]

-Thanks . I had been wondering about this. Right now, his

immuno wants to try preventative Bactrim for a few months first, but

I think that will only lead to bacterial overgrowth/possible C diff

and more GI issues for him. The probiotic is a good idea, and his dr

has recommended one but it is very high about $120 a month. So right

now I am just using that Danactive immunity drinks. I wonder if I

would see improvement in all his issues if he was on IVIG. Thanks

for your help.

, Schulman <dietdoc@...> wrote:

>

> " Do those of you that your kids are on IVIG, does it seem to make

a difference with the GI issues? "

>

> -

>

> Absolutely. If the child has an immune disorder + GI issues,

IVIG generally helps. However, depending on the GI problem,

adjuvant treament may be warranted.

>

> My daughter has panhypogammaglobulinemia (low everything) and

had bacterial overgrowth and infectious colitis. She improved so

much with IVIG but she also needed a medical grade probiotic and

osmotic cathartic to manage particular GI condition.

>

>

> mom to CVIDer

>

>

>

[Guest guest]

" ...his immuno wants to try preventative Bactrim for a few months first, but I

think that will only lead to bacterial overgrowth/possible C diff and more GI

issues for him. The probiotic is a good idea, and his dr has recommended one but

it is very high about $120 a month. So right now I am just using that Danactive

immunity drinks. I wonder if I would see improvement in all his issues if he was

on IVIG... "

-

I can understand your concerns about overgrowth and c.dif. We use VSL#3 and

it costs around the same amount as the one your doc recommended. I am not

familiar with immunity drinks. I forgot what your son's history and studies

showed but, if he has hypogam + GI issues and the doc thinks he needs

prophylactic antibiotics, IVIG could make a difference.

mom to CVIDer

[Guest guest]

,

VSL#3 is what he recommended. He recommended it for both my kids, we

just can't afford it with all their medical expenses. The Danactive

drinks you can get at the grocery store and they have a much higher

amount of live active bacteria in them, than just yogurt, so that is

what we use for now. Forgive my ignorance, but what is hypogam +.

My son 's history is crazy. He is 8 now. At 3 he was

diagnosed with autism, faily healthy but had GI issues. He had

reflux bad, and had his appendix and gallbladder out at 4. The

gallbladder did help the constant vomiting, but at 6 he began having

more GI issues again, blood in stool, and diarrhea for months, and

vomiting frequently(very carsick too). These problems come and go

since then. At around 5-6, he started getting repeated resp

infections, and had pneumonia a few times over the years. He also

developed asthma that came on suddenly and became severe within a

year. During these same 2 years from 6-8, he started breaking bones

for no reason, and we found he had severe osteoporosis. We now have

found he has a gene defect for osteogenesis imperfecta(brittle bone

disease). With him going into his 3rd year of repeated resp

infections(many viral), his A/I decided to test his immunity in

November.ALso my daughter has a severe autoimmune disease which he

is her primary dr too, and he said immune problems run in families.

He had normal immunoglobulins, but only had 3 out of 12 responses to

pneumoccal vaccine, so the dr said had an antibody

deficiency. He just ran his pneumococcal titers again and he lost

the 3 responses he had the first time, his dr said he has poor

immunological memory too. We took with us to Cincinnati in

January for tests in all his issues (my daughter sees speicalists

there), and they thought more CF, but tests were neg. They ran other

teets, that I do not know what they were, maybe you know. The

results were expressed as CD3+19+ CD4, etc. What are these? Are they

B or Tcell counts? ANyway several of them were low, but the drs

there did not seem concerned. Our immuno in Dallas, never commented

on these tests, I don't know if he ever got them, I guess I should

get a copy. Can you tell me if it significant they are low? Sorry to

have so many questions, but I would love to know what you think.

>

> " ...his immuno wants to try preventative Bactrim for a few months

first, but I think that will only lead to bacterial

overgrowth/possible C diff and more GI issues for him. The probiotic

is a good idea, and his dr has recommended one but it is very high

about $120 a month. So right now I am just using that Danactive

immunity drinks. I wonder if I would see improvement in all his

issues if he was on IVIG... "

>

> -

>

> I can understand your concerns about overgrowth and c.dif. We

use VSL#3 and it costs around the same amount as the one your doc

recommended. I am not familiar with immunity drinks. I forgot what

your son's history and studies showed but, if he has hypogam + GI

issues and the doc thinks he needs prophylactic antibiotics, IVIG

could make a difference.

>

>

> mom to CVIDer

>

>

>

[Guest guest]

" ...CD3+19+ CD4, etc. What are these?... "

-

Sorry to tell you that I don't know exactly what this means. My guess is that

the doc wants to see T-cell level (CD4), level of memory/maturity of the cells

(which you said was low), and some type of activation. I really need to do my

homework...on this one...I just can't interpret. Anyone know?

I wonder if there is any way to get VSL#3 covered -- if you want to pursue it.

Some employers offer medical " savings " that allow you to put money untaxed money

for medical expenses (this is not insurance). Perhaps you are familiar with

this already? If not, you could contact Ms. Krash at the IDF for details.

You asked me, " Forgive my ignorance, but what is hypogam + " . I meant

hypogammglobulinemia (low IgG). = ) You said your son has normal

immunoglobulins but low titers to vaccines. This can happen and, depending on

the clinical symptoms (usually relapsing infections/pneumonia as you mentioned),

IVIG may be warranted.

[Guest guest]

,

Thanks so much for your help. On those labs I mentioned, the title

of the test at the top does say activation marker. I found that

report again, and some of the other things listed are CD3+4+HLA,

CD3+4+95+, CD3+4+OX40, I have no clue what it is testing, but his

results on 50% of these were quite low. Do you know what activation

markers are? Also I have read about low lymphocytes being a sign of

PID, well his past 2 years of blood work have all shown low lymphs

on his cbc. Does that mean anything?

The company my husband is currently with, does not offer the medical

savings accounts, which is really bad with all our expenses. My

daughter's disease is very rare and we have to go to Cincinnati for

weeks at a time, every 3-5 months to see specialists there. SO we

could certainly use one of these accounts. I think I will check with

my insurance about it, and see if it is prescribed if they would

cover it. Does it seem worth the expense to you?

Thanks so much for all your information, it answers so many

questions.

- In , Schulman <dietdoc@...> wrote:

>

> " ...CD3+19+ CD4, etc. What are these?... "

>

> -

>

> Sorry to tell you that I don't know exactly what this means. My

guess is that the doc wants to see T-cell level (CD4), level of

memory/maturity of the cells (which you said was low), and some type

of activation. I really need to do my homework...on this one...I

just can't interpret. Anyone know?

>

> I wonder if there is any way to get VSL#3 covered -- if you want

to pursue it. Some employers offer medical " savings " that allow you

to put money untaxed money for medical expenses (this is not

insurance). Perhaps you are familiar with this already? If not,

you could contact Ms. Krash at the IDF for details.

>

> You asked me, " Forgive my ignorance, but what is hypogam + " . I

meant hypogammglobulinemia (low IgG). = ) You said your son has

normal immunoglobulins but low titers to vaccines. This can happen

and, depending on the clinical symptoms (usually relapsing

infections/pneumonia as you mentioned), IVIG may be warranted.

>

>

>

>

>

>

[Guest guest]

" ...some of the other things listed are CD3+4+HLA, CD3+4+95+, CD3+4+OX40..his

results on 50% of these were quite low...Do you know what activation

markers are? Also I have read about low lymphocytes being a sign of PID.. Does

that mean anything? "

--

Sorry, I have not had a chance to read up on what this means. The NIH has some

info about this at:

http://www.thebody.com/nih/immune_system.html

It seems to have to do with the T-cells activating B-cell to secrete plasma

cells which secrete immunoglobins -- but please confirm this in the literature

or with your doc.

With regard to lymphocytes, yes lymphopenia can be a marker or risk factor for a

PID. Typically, T- and B-cell function/numbers are also considered.

If you are at Cincy, I can see why they are doing these high tech studies.

There is a rather sophisticated lab there. I can't imagine why they would be

doing T- and B-cell compartment/function studies unless the doc(s) felt that

there was an issue to explore.

There is a reputable GI doc there as well and, if VSL was suggested, you may be

in good hands. I wish that I could buy every family a years worth of this

stuff. I have heard more than three times, in the last year, of families that

could not get it due to expense. You could call the company and ask them for

samples, or call the GI nurse and see if she will order samples on your behalf -

hmmm.... I am at a loss here.

I hope that you get answers or at least the best possible care for your kiddo.

mom to CVIDer

[Guest guest]

> >

> > " ...CD3+19+ CD4, etc. What are these?... "

> >

> > -

> >

> > Sorry to tell you that I don't know exactly what this means.

My

> guess is that the doc wants to see T-cell level (CD4), level of

> memory/maturity of the cells (which you said was low), and some

type

> of activation. I really need to do my homework...on this one...I

> just can't interpret. Anyone know?

> >

> > I wonder if there is any way to get VSL#3 covered -- if you want

> to pursue it. Some employers offer medical " savings " that allow

you

> to put money untaxed money for medical expenses (this is not

> insurance). Perhaps you are familiar with this already? If not,

> you could contact Ms. Krash at the IDF for details.

> >

> > You asked me, " Forgive my ignorance, but what is hypogam + " .

I

> meant hypogammglobulinemia (low IgG). = ) You said your son has

> normal immunoglobulins but low titers to vaccines. This can

happen

> and, depending on the clinical symptoms (usually relapsing

> infections/pneumonia as you mentioned), IVIG may be warranted.

> >

> >

> >

> >

> >

> >

[Guest guest]

> >

> > " ...CD3+19+ CD4, etc. What are these?... "

> >

> > -

> >

> > Sorry to tell you that I don't know exactly what this means.

My

> guess is that the doc wants to see T-cell level (CD4), level of

> memory/maturity of the cells (which you said was low), and some

type

> of activation. I really need to do my homework...on this one...I

> just can't interpret. Anyone know?

> >

> > I wonder if there is any way to get VSL#3 covered -- if you want

> to pursue it. Some employers offer medical " savings " that allow

you

> to put money untaxed money for medical expenses (this is not

> insurance). Perhaps you are familiar with this already? If not,

> you could contact Ms. Krash at the IDF for details.

> >

> > You asked me, " Forgive my ignorance, but what is hypogam + " .

I

> meant hypogammglobulinemia (low IgG). = ) You said your son has

> normal immunoglobulins but low titers to vaccines. This can

happen

> and, depending on the clinical symptoms (usually relapsing

> infections/pneumonia as you mentioned), IVIG may be warranted.

> >

> >

> >

> >

> >

> >

[Guest guest]

> >

> > " ...CD3+19+ CD4, etc. What are these?... "

> >

> > -

> >

> > Sorry to tell you that I don't know exactly what this means.

My

> guess is that the doc wants to see T-cell level (CD4), level of

> memory/maturity of the cells (which you said was low), and some

type

> of activation. I really need to do my homework...on this one...I

> just can't interpret. Anyone know?

> >

> > I wonder if there is any way to get VSL#3 covered -- if you want

> to pursue it. Some employers offer medical " savings " that allow

you

> to put money untaxed money for medical expenses (this is not

> insurance). Perhaps you are familiar with this already? If not,

> you could contact Ms. Krash at the IDF for details.

> >

> > You asked me, " Forgive my ignorance, but what is hypogam + " .

I

> meant hypogammglobulinemia (low IgG). = ) You said your son has

> normal immunoglobulins but low titers to vaccines. This can

happen

> and, depending on the clinical symptoms (usually relapsing

> infections/pneumonia as you mentioned), IVIG may be warranted.

> >

> >

> >

> >

> >

> >