Dumping Syndrome

[laurie]

Ok, this is the most recent dx Hunter has now recieved.
Anyone else had a problem with this?
Any advise on how to inc. the restrictions for this in to a day of school is also needed here!!
I think the hardest thing is going to be the fact he can't have anything to drink for an hour after eating.
So I now have to work around this, tube feeds, and drinking.
At home it's going to be easier than when school starts. I'm starting to feel like Hunter's school days are going to be spent in the nurses office, but I'm determined to have him AT school this year versus being home bound again.

HELP!!!!
Laurie

[kristen]

What is dumping syndrome? I've heard the term 'dumping' used in regards to the dumping of fluids as a reaction to hyper/hypo glycemia...but that's the extent of my familiarity with it.

Happy to help research, etc. if you need....

KJ

[laurie]

hey everyone,
my mom found this site/survey while doing some research yesterday. I emailed it Kristen and she suggested I post it here as well.

www.frusano.com/tinc?key=ZYgOeC4I&formname=Survey

We might be able to get some good info on ready made safe items.......worth a shot!!

Laurie

[laurie]

Hey Kristen,
Dumping syndrome is............sometimes happens after stomach surgery (Hunter has had soo many!!) It is caused by large amounts of food passing quickly into the small intestine. This causes symtoms like abdominal pain or fullness, nausea, diarrhea, dizziness, weakness and fatigue.

I've been following the diet the doctor suggested, 1 hour between all tube feeds/food by mouth/drinks. It seems to be helping.
The doc also told me to not force Hunter to eat by mouth. They were thinking the week I took him off of all foods by mouth to detox his body before the food trials might not have been long enough.
We re-started the food trials again. We are doing Tyson frozen chicken breast tenders. I figured I would go with something that would be easy for both of us, plus be something he liked. Since last Friday he's only eaten by mouth 3 times, but no reaction from the chicken.
Finally the sweating at night has almost completely disappeared again and he's only had 2 episodes in the last week where I thought his blood sugar was out of whack. His eyes were soooo glassed over, almost like tears that wouldn't form a puddle and fall........strange!!
All in all he's doing great since our last setback, and as Hunter would say......he has mommy poop again.........haha



Laurie

[kristen]

Hey Laurie!

I just read your latest on caringbridge...so glad things seem to be 'adding up' here lately!

I'm a little confused (as I'm sure you are) about the frequency of his meals and the fact that you are still dealing with BS issues. It shouldn't be from the length of time between eating...as it's a very small window...so that makes me wonder if there is something in what he's eating that he's having a metabolic reaction to. What are your thouhts? Does it seem to be getting better with the dumping settling down?

BTW - have you been able to set up an appointment with a metabolic specialist?

I did notice with Coley that once his BS started to swing, for whatever reason, that even when we 'fixed' the problem it seemed he still had a tendency to swing...I don't know how to describe it so well...like ripples in water or after shocks...don't know if that makes sense...but it just seemed that the further away we got from an 'event' the less prone to another he became...does that make sense? Are you seeing a similar thing?

Also, wanted to offer a suggestion...smarties are great, and so is milk, but for whatever reason safe crackers work almost instantaneously for Coley and hold a lot longer than dextrose. Fred has mentioned the same is true for him, you may want to give those a try. Sometimes it seems like Coley's body just doesn't handle sugar (of any type) very well...and that's especially true when he's 'rippling' but the crackers never fail, the starch maybe?

Another interesting thing...the Dr asked us about Coley's food preferences yesterday. Course we told them that he hates cookies & cakes but loves steak & fish, etc. But then they asked Coley what his favorite food was...his reply "crackers." I was SHOCKED...thought for sure he would say bananas, candy, ice cream, pudding or something like that. Hmmmmmmm.

Anyway, just thought I'd toss that out there... Hope things continue to go well! Good luck with the green beans! When do you trial those?

KJ

[laurie]

hey KJ,
I'm not sure what the problem is with his blood sugar, trust me, I've asked over and over!!
I'm concerned thinking he isn't getting enough through his tube feeds to really keep him stable. He's up to 54 pounds and has gotten 2 inches taller and his amounts haven't been changed.
I also asked the doctor if the heat and humidity and the fact his activity level has increased could have something to do with it........still no definite answer.
Nothing yet on the metabolic spec., I'm still waiting on a call back from the GI. (I made that call 2 weeks agao I think)
Kelly (dietit.) did speak with the GI and told him what all was going on and she said he was trying to figure things out.
I have a new question for you now.......I've noticed something really strande with Hunter again in the last week. I swear it just seems to get harder and harder to be a parent. Every time something happens now I have to wonder if it's all tied in to the food issues!!
In the last week Hunter's palms of his hands have been peeling, almost like what happens if you get a sunburn. Has Coley done that before? Or is this just a regular childhood illness or something? It's nowhere but his palms, not his fingers or the tops of his hands, just the palms.
I'm really eager to see if anyone elses kids have been through this before I call the doctor and sound like a total nut case..........haha

Laurie

[kristen]

Geez Laurie...I don't know what's up with Hunters palms. The only time Coley had anything like that was when he has Hand/Foot/Mouth...strangely he got it in phases though: hand, foot, then mouth...spread over a couple months. But unless you saw blisters, I doubt that's it.

Any chance it could be chaffed from something like his bat, or a rake or something? Is it causing pain? How are you treating it? How long has it been there?

I can't think of anything that would associate it with Fructose...but I'll be watching to see what others say.

KJ

[kristen]

Laurie, I just remembered something that I wanted to tell you about...

About a year ago, while we were still in the midst of the 'mess' with Coley and weird things were happening all the time, there was this one thing that had me really concerned, but I couldn't find much on it.

It was his big toe nails. They were literally peeling off on a routine basis. All I could think about was how the Drs (across all the deciplines) check nails for clues. Well what the heck did this one mean? Particularly when his nails & hair are really strong. What sort of an indication was this? Should we see a certain Dr? You know the gammot of questions that run through your mind....

Well, it was when we ended up at the Drs for Coley's HFM, that I pointed it out to his ped. He took one look at it and said it looked like some sort of trauma, but that there was no bruising...hmmmmm. I hate that, thanks for confirming my concerns but not having anything to squelch them. He told me not to worry, but like everything else (especially piled up together) that wasn't going to happen.

Well, a couple days later my Mom & I were sitting on the porch & Coley was riding his tricycle. My mom noticed something about the way Coley was riding and called my attention to it.

He wasn't peddling yet, doing the Fred Flinstone technique, with sandles on, and using mostly his toes...AH HA! No more worries about those toenails, and no more wearing sandles on the tricylcle! It healed up in no time and he's now using his peddles!

I just wanted to give you a big hug...I know how you can get into that hieghtened sense of 'awareness' on stuff...and it very well may be that this peeling is an indication of something more, or it could be something else.

I'd think about all the 'things' you can...watch him, ask him about it, etc. If nothing comes up...it could just be a simple case of dry skin...it is summertime...could be he touched something like 7-day itch or poison ivy or whetever. But do mention it to the Dr if you can't come up with something...it's important that all these 'things' get documented...especially since it's possible it is a 'clue.' But I would just call and ask if it should be looked at...it maybe eczema or an allergic reaction to something like hand soap, or something else...let the Dr worry about whether it's a clue or something seperate.

Hope that helps,
KJ

[Gretchen]

I don't know if it's a coincidence, but Jarrett's toe's and finger's have peeled since he was a baby. I guess I never thought much of it,but that's kind of weird that you guys are dealing with the same thing. I think we need to have a big national get together to compare all the "weird" things our kids do!!LOL!!!

Gretchen

[Tammy]

Regina doesn't have any kind of peeling, but I would certainly be in favor of a big get-together.

It has been mentioned several times, but nothing formal has ever come from it. But if anyone ever does put anything together, you can count Regina and I in.

[ArtC]

Here is a link to Mayo Clinic's website that talks about how fingernails offer clues to your health. www.mayoclinic.com/health/nails/WO00055&slide=1
There isn't a picture & info. about peeling nails, but about nails that separate from your your nail bed. It is interesting though.