Re: GASTRO QUESTIONS -- ANYONE???

[Guest guest]

Dale,

Thank you for your quick and helpful answer. We did a stool study a few

months back during an episode, and there was nothing. I will look into the

Acidophilos.

Regards...Pam

(TIM CVID age 15)

[Guest guest]

mole1440@... wrote:

> Tim keeps having bouts of diarrhea and then constipation. He feels sick to

> his stomach, and gets fatigued. Misses school. He has used miralax for

> constipation -- should we just always use it? Anyone have any good

suggestions

> about it?

Have you done stool studies? Your pediatrician would know what to order

-- but our kids are really susceptible to all kinds of parasites and

giardia. Much higher than the normal population. However, with Katy,

we couldn't ever find the culprit although they were certain that her

symptoms were giardia. Some doctor would rather order a round of Flagyl

(an anti-parasite drug) than to bother with stool studies. But either

way -- I would ask about it.

Another thing to try is to give oral Acidophilos (that's not spelled

right - but I can't figure it out!). Here's what happens. When you

have acute diarrha -- it peels off the outer lining of the gut (gross, I

know) and that's where a lot of the " good " bacteria live that keep the

" bad " bacteria under control. So, after every major diarrhea attack, we

learned to give Acidophilos (you can get them at any health store) to

try to re-establish healthy intestinal flora. It seemed to stabilize

Katy more quickly and stop the cycle. You should run that by your

doctor before giving and be aware that if he's lactose intolerant --

you'll have to look for lactose free Acidophilos.)

In His service,

dale

[Guest guest]

Tim keeps having bouts of diarrhea and then constipation. He feels sick

to

> his stomach, and gets fatigued. Misses school.

It can be Irritable bowel syndrome. That is common with our kids also.

Janet mom to Brittany CVID age 15

[Guest guest]

Tim keeps having bouts of diarrhea and then constipation. He feels sick

to

> his stomach, and gets fatigued. Misses school.

It can be Irritable bowel syndrome. That is common with our kids also.

Janet mom to Brittany CVID age 15

[Guest guest]

Rogena,

Thanks, I actually asked his primary care about it and he doesn't think he

has it. I am going to be asking the immuno doctor this summer.

THANKS SO MUCH!!!! Pam

(TIM - CVID age 15)

[Guest guest]

Pam, I know your son is older and perhaps this has already been

addressed, the possibility of Celiac Disease. It is one of the

leading gastro problems associated with low IgA. The symptoms you

described are the same problems I have had since I quit nursing my

now 3 year old, Cole, when he was about 8 months. Until last

October when he was diagnosed as having PID, I just figured at his

age it was " toddler tummy " . Now I know it may be something more

complex. We will be testing Cole this spring for Celiac Disease.

It is easily " treated " once properly diagnosed. The patient must

engage in a gluten-free diet. I know this may not be what your son

has, just wanted to throw the idea out.

Rogena (Mom to 4 boys, including Cole -IgA & IgG Subclass Def, GERD,

possible Celiac)

>

> Tim keeps having bouts of diarrhea and then constipation. He

feels sick to

> his stomach, and gets fatigued. Misses school. He has used

miralax for

> constipation -- should we just always use it? Anyone have any

good suggestions

> about it?

>

> I have talked to immuno doc about it, but didn't really get

> anywhere....HELP!!!!

>

> Pam

> (TIM - CVID, age 15)

>

>

>

>

[Guest guest]

Pam:

If the more important stuff Dale mentioned is ruled out, I would consider a

food intolerance? My kids are sensitive to dairy. I've never been determined to

be sensitive to anything in particular, but have always had some gastro

problems... nothing serious enough to look into, but even as a kid after certain

meals (buttery, greasy especially) would have problems. Then the same meal

wouldn't do that the next time, etc.

Anyway, now as an adult, I have had worse and worse symptoms and realized

with certainty my symptoms now are totally 100% caused by chocolate. Now, I am a

confirmed chocoholic, so this was not fun news to me. But then, neither is

sitting on de toilette 10x per day. No chocolate, no poopy problems. It was hard

to figure out since I would eat chocolate EVERY Day. Anyway, not anymore! End

of story.

So maybe consider diet. Hope my disgusting story helps.

(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]

Pam, I am sure you have wonderful ped, so I don't want to sound like

I am second guessing. But, if YOU think it might be a possibly, no

matter how remote, the first step to test is so simple that you may

want to insist. The first step to test for Celiac is with a simple

blood test.

I think any good ped should have no problem ordering that for you,

even if only to ease your mind. :-) If the results of the blood

test are positive or questionable then they would need to perform a

biopsy of the intestine to definitively diagnose the disease. Good

luck!

-Rogena (Mom to 4 boys, including Cole -IgA & IgG Subclass Def,

GERD, possible Celiac)

> Thanks, I actually asked his primary care about it and he doesn't

think he

> has it. I am going to be asking the immuno doctor this summer.

>

> THANKS SO MUCH!!!! Pam

>

> (TIM - CVID age 15)

>

>

>

[Guest guest]

Rogena,

Thanks for the info -- I think it is easy to dismiss our gut instincts when

doctors tell us otherwise. In this case, I am thinking it isn't celiac (sp?)

because he eats all kinds of breads, etc., and only has an issue once a

month. Would that still be indicative of celiac?

Pam

[Guest guest]

Thanks . I wondered about the milk intolerance, but he isn't a huge

milk lover. I am going to start tracking foods, etc., to see if any

connection.

Pam

(TIM - CVID age 15)

[Guest guest]

Pam: I would tend to agree with you that the likelihood it is Celiac

is low. Celiac presents mostly through stool/bowel problems.

Although it is generally heralded by frequent loose, mucous-like

stools it can alternate with constipation (similar to IBS). It does

not generally present with vomiting and nausea is usually only present

when there is a great deal of bowel distress. I think your doctors

are right to doubt its presence in this case. It sounds more like

GERD. Hope that helps!

-Rogena (Mom to 4 boys, including Cole -IgA & IgG Subclass Def, GERD,

possible Celiac)

[Guest guest]

Pam: On another note, be sure to check labels on foods. Many foods -

contain lactose -- the ingredient in milk and dairy products that

people can be intolerant of. It can be found in many common foods.

Be sure to check and double-check those labels!!!!

-Rogena (Mom to 4 boys, including Cole -IgA & IgG Subclass Def, GERD,

possible Celiac)

>

> Thanks . I wondered about the milk intolerance, but he isn't

a huge

> milk lover. I am going to start tracking foods, etc., to see if

any connection.

>

> Pam

>

> (TIM - CVID age 15)

>

>

>

[Guest guest]

Thanks Rogena, didn't think of GERD!!

Pam

TIM age 15 cvid