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Mason's GI issues weren't always as bad as they had been in 2003. That

was by far his worst year ... and sigmoid volvulus is also rare. My son's

intestine had a very easy time twisting because he was born with a

redundant colon ... meaning he had more than he should have. At 2 1/2

years old, he had what a grown adult should have which is about 5 feet of

intestine; whereas he should have only had about 2 1/2 feet ...

But before that, he generally fluctuated between constipation and

diarrhea. The diarrhea didn't always come with his episodes of fever

either. He also used to get a terrible rash on his bottom ... I know

exactly what you're talking about when you say they look like raised

welts! He hated having his diaper changed and would cry as soon as the

diarrhea came out because it was so toxic on his skin. I remember one

episode was so bad that I had actually gone through 60+ diapers in one

day! You could hear him from another room when it would come out ...

sounded like an old faucet being turned on and shooting out!

There are still times when his intestinal issues are worse than other

times. Sometime he has bellyache that comes and goes. I don't think his

GI issues are as severe as some of the children on this listserve either

.... except for back in 2003, and like I said that was a rare thing going

on. But though he's not as severe, he still has these issues going on and

I feel so sorry he has to deal with it all.

The acid reflux too will be worse at times, and then can aggravate the

asthma or vice versa. It sorta all can go hand in hand. Cuz then when

he's really constipated (even with being on Miralax) ... that can

aggravate the acid reflux, etc. Mason also had an endoscopy and

colonoscopy done late last year to rule out the IBD's (ulcerative colitis

and Crohn's) ... thankfully they were ruled out, but the GI isn't

convinced that somewhere down the road, he will not have an IBD.

But we are trying to keep the faith. We have a really wonderful

GI/Nutritionist at CHOP in PA that is doing his best to try and make

Mason's life better, to lessen the severity of his symptoms by trying

different things and in a few months may be inserting a feeding tube to

help ease the weight issues, and by now working with NIH to hopefully find

a true diagnosis for our son and get a better treatment plan in place. We

know its going to take years ... but there's not much we can do about it,

other than keep on praying. This little boy of ours is such a little

Trooper ... like so many of our kids here on this listserve. These kids

amaze me ... they make me whine less when I'm not feeling the greatest,

because they make me realize how they look at life is so different than

what most people look at life ... we really learn a lot from what our son

is going through, though I wish he didn't have this awful disease.

I hope and pray you soon get your date to go to the NIH and they are able

to help your daughter too! They really are wonderful people there. And

the Children's Inn is an awesome place for the kids!

Take care.

Heidi

> Hi Heidi

Thank you for your response and concern. This is why I love this group!!!

My daughter is just turning two in less than a week. She has only had GI

issues during the last two months roughly. SHe has had fevers since before

her first birthday. They had diagnosed her at my pediatrician with a

strong rotovirus when they started because it had preceeded a fever

episode and it was a " new " symptom for us. This was two months ago. She is

still dealing with recurrent diarrhea and diaper rash that is very strange

in appearance (it can looks like raised welts). She also got these little

faint marks on her bottom that don't go away. We had been to the

rheumatologist since and he called the marks little bruises but I don't

think that is quite what they looked like. He didn't say much about the GI

stuff other than it did get him moving toward a diagnosis other thatn

. We are in that process right now. We did submit paperwork to NIH

two months ago and I just emailed Pl aas and she indicated they are

not even reviewing new cases at this time and I should get back to her in

a month. I am not sure what that means but I think we may proceed with

genetic testing out of our own pockets at this time. I would like answers.

I do understand that there are some GI issues that come with some of the

other periodic fever syndromes but they seem much more severe than just

teh intermittant diarrhea and rashes that we deal with. I don't even think

they compare at times so I am not totally convinced that they are related

since it is new to her and they seem to come and go not necessarily with

the fever episodes. Sometimes the GI stuff comes before the fever,

sometimes after and sometimes we get GI but no fever.

I am so confused!!!!

I am so sad to hear of everything your son is going through and in turn,

your family is going through. I know how hard it is for us to deal with

what we have to, but I cannot imagine the decisions you have in front of

you.

Thank you for your input and let me know what you think. Did your son's

start out mild and get worse or were they always that severe? I wish you

healthier days!

Lori

Mom to four daughters including (2 years) ?PFS