Re: Savannah-long reply & Dale-question

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" immune disorder could be causing her to have this stomach pain--even though her

endoscopy looked perfect?...Today her ankle hurt so bad...survived soley on

breastmilk till 14

months... "

Yes. Immune problems can create GI problems. Or, the reverse can happen as

well. Regardless, many pumpkins with dysregulated immune systems have GI issues

(infections, imbalance in flora, inflammatory problems, etc). It is very

difficult to diagnose GI problems when children are so young and most get

overlooked or ignored. Another problems is that the GI-immune connection is not

well understood.

It is VERY common for our pumpkins to have GI problems that contribute to

varying levels of chronic diarrhea or the opposite -- " constipation " or

pain/problems when stooling. This is a major problem with some of our kids.

The lucky ones manage it effectively with Polyethelne (sp?) glycol or Miralax.

Our peds doc's pet theory is that immune dysregulated kids have problems with

their flora (due to antibiotic use or problems managing good/bad

micro-organisms) and that this throws a wrench into " normal " stool production.

Also, GI infections, bacterial overgrowth, and flora problems can contribute to

dysmotility.

Constipation alone can cause severe pain, inflammation, bacterial overgrowth

and infections. This is difficult for a an inexperienced doc to recognize.

Obviously, you need to figure out what is really going on -- it may or may not

be more complicated than this. However, if your child is not stooling daily,

then a trial with an osmotic cathartic is often suggested by attentive GI docs.

In our experience, most are grossly undertrained with regard to immune issues.

Please know that you are not alone here. And, it is possible that I have

walked in your actual shoes! My daughter had terrible abdominal pain for the

first 2 years of her life and would not eat either. At 4 mos (just when my IgG

probably faded from her system), she started waking up screaming bloody hell and

we dosed her with tylenol/motrin per the docs. She slept in 1-3 hour intervals

for the next two years. I nursed her exclusively and she survived on that for

>16 mos -- at which point she also verbalized that her belly and joints were

killing her. This broke my heart because I had a feeling all along...

She was failure to thrive by every measure of her behavior but did not look it

(she was in the 90% percentile but I became undernourished due to extended

nursing and sleep deprivation). When I could not take it any more, at 26 mos, I

took her across the country to Children's Hospital Los Angeles and she was

evaluated and placed on IVIg. We left our home, our jobs, our pet, etc. to get

my daughter help and we would do it all again if needed.

Our baby was so sick that it took about 2-3 months for the IVIg to really make

a difference. Then, we had to deal with healing her gut -- which took another

year and she is still on maintenance meds for that.

Now, she is doing beautifully but does continue with some joint pain -- ankles

and knees. Our tsunami has passed but we still have troublesome days here and

there. We are trying to figure out how to " cure " the joint pain but I am not so

sure that answers are out there...

Dale? Any thoughts? I know that IVIg helped Katy so much. Did she every

suffer with joint pain while on IVIg? Low trough? When she got ill? Can you

shed any light?

Other parents?

Thanks,

(mom to 4 year old, low immunoglobins, T-cell irregularities)

osdbmom <osdbmom@...> wrote:

That is some great info, thanks. So, an immune disorder could be

causing her to have this stomach pain--even though her endoscopy

looked perfect? just trying to get a handle on this. And it would

explain her " cramps " I have even taken her to my chiropractor for the

muscle cramps as she calls them, but that doesnt help. Today her ankle

hurt so bad, I had to dress her, brush her teeth, and carry and plunk

her into the car myself, she couldnt put any weight on it. But I had

given her tylenol and knew it would work sooner or later, so I made

her go, she has missed SO MUCH SCHOOL lately its ridiculous. We are

setting up a 504 for her next week, but of course that doesnt help

the last quarter of school. I do have one cousin, a first cousin, who

had JRA, so I wonder about that with her too. My older daughter asked

me why they cant just take enough blood AT ONE TIME to do all the

tests--they are getting so sick of going to the labs. I had to

laugh--sometimes its either laugh or cry.

Your daughter sounds almost exactly like mine. Savannah would not eat

food till she was past a yr, survived soley on breastmilk till 14

months--then she would eat bananas. Now she is 8, and would rather

starve than eat something that she doesnt like. My mom thinks I should

be firmer with her about it--but the struggles wear me out--and after

the allergy dr told me that children often avoid foods they are

allergic to, I hate to force anything on her. But she will eat--hot

dogs, chicken, peanut butter, pizza, fruit, and cereal. Thats about

it--unless I get ambitous enough to bake eggless milkless cookies or

get her chocolate soy ice cream. And chocolate is the ONLY flavor she

likes. IT does get frustrating. It would be a fantasy if something

like IVIG could suddenly make it so that she WANTED the food I make

for everyone else for dinner!!!and pack on some pounds!!!She could

wear a size 6 around the waist--but needs a size 10 for height LOL so

she cinches a belt every day.

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> Now, she is doing beautifully but does continue with some joint pain --

ankles and knees. Our tsunami has passed but we still have troublesome days

here and there. We are trying to figure out how to " cure " the joint pain but I

am not so sure that answers are out there...

>

> Dale? Any thoughts? I know that IVIg helped Katy so much. Did she every

suffer with joint pain while on IVIg? Low trough? When she got ill? Can you

shed any light?

from Dale,

, At some later point I remember Katy complaining of the muscle

and joint aches again and when checked she was low trough -- so they

increased her IVIG. But while on a good dose -- I don't believe she had

any joint problems. I'm wondering if possible autoimmune stuff -- like

JRA or something is kicking in? I don't know how that is tested since

she's on IVIG. Remember that some tests are not accurate because they

check things that are in the IVIG rather than what they personally have

developed.

Sorry, I just don't know.

In His service,

Dale