New dx to add to the list

[my little penguin]

Delayed gastric emptying or Gastroparesis

Borderline delayed gastric emptying results for solids test
But given his food limitations and intake
Gi is strongly recommending we trial erythomycin
To find the sweet spot for emptying vs stomach cramping
Also avoid fats and complex carbs
Small bites and chew a lot


Not sure where I am feeling about this but glad it's a possible answer

 

[Tesscorm]

Sorry MLP that there is another concern/dx. But, as you said, having an answer is better than not knowing with no plans - granted, the relief of 'knowing' is sometimes only fleetingly better. :ghug:

Likely a uneducated question but can gastroparesis have periods of time when it is not an issue? Similar to flares/remission? Just hoping he won't always have to deal with this.

:ghug:

 

[my little penguin]

Not sure
I know little kids can have it for a few months then get better but he has had it for a while
Been on mostly formula since April
The docs were hoping getting crohns under control would fix this part
But it didn't so we tested him last week
I was avoiding reading too much about it before now
Just bits and pieces

 

[kimmidwife]

Very sorry to hear MLP,
I wrote you a post in the GP support group thread. Hope they get him on a treatment that helps!

 

[CarolinAlaska]

Sorry to hear it. Why can't we get the nice diagnoses like fracture or strep throat - things that heal well with good outcomes??

Better yet, no gastroparesis, or not IBD!

 

[Clash]

Sorry to hear there is another dx. I hope the meds get him to a good place quickly.

Sending hugs your way!

 

[Maya142]

Sorry to hear about. Hang in there - M's was SO bad for a while and it has gotten much much better. She is barely using her tube now and is managing to eat most of her calories!

She is on Erythromycin too.

 

[Sascot]

Sorry to hear that. Hope the Erythromycin helps without causing any other issues

 

[pdx]

Really hope the erythromycin helps.

 

[Pilgrim]

I don't know how you keep up with all of the different food issues for your DS. And now this! Hope the meds set things right.

 

[ronroush7]

Wishing and praying for the best.

 

[Farmwife]

I know your not surprised by the new dx but it still doesn't make it easier.

I'm sure it's in one of your other threads but when you have time can you tell us the steps it took to get him dx with this.

Tess,
Asked a couple years ago if this can wax and wane and the GI said yes but mostly to young ones.
which makes sense with what mlp said.
Grace still has her feeding tube placed because every few months her stomach start misbehaving. However in between she's fine"ish".

 

[Maya142]

Farmwife, a gastric emptying test is used to diagnose Gastroparesis. I've read conflicting things but it seems like younger kids are more likely to grow out of Gastroparesis.

M's has certainly gotten better as she gained weight but definitely has not gone away.

 

[my little penguin]

^^^yeah that

Just gastric emptying test
Ate a radioactive egg plus toast
Then scanned
Based on emptying results he was dx.

Ds is older so probably won't go away

 

[my little penguin]

The good news
Med is working - ds can finally eat at least 6 small meals a day
The bad news
The Med is working - ds hasn't slept well and has lots of true belly pain for the past two days
So waiting it out for the weekend to see if it improves
And update Gi Monday

 

[my little penguin]

Just needed more time and lots smaller meals
Had regular dosing yesterday
And 8 small meals ( including 4 shakes -1000 calories ) total 2000 calories
Worked out much better
Only minor - his typical belly pain
Going to repeat today

Just not sure how that schedule will work with school and being 12 :lol:

 

[Tesscorm]

Glad you're finding what works. :ghug:

But, it is tough to spread out calories/food over so many meals... especially, as you said, a 12 year old and school! :hug:

Not sure how he drinks his shakes (ie sips at it or just chugs down a shake in a minute like S) but would it be possible for you to send him one or two shakes in a thermal container that he can just sip all day? Would, perhaps, eliminate the need to schedule one 'meal' if he's getting the nutrition/calories by sipping throughout the day?? (Although, brings on another issue that he'll have to carry it around with him all day... )

 

[my little penguin]

He is suppose to sip per Gi
But they taste foul so he chugs
Plan was to send two to school for snacks
Will see

 

[Tesscorm]

Can he replace one or two shakes with a brand that tastes better (ie a polymeric formula)?

 

[Maya142]

M was also told to sip. We would put Neocate in a thermos and send it to school with her. It came back with about 5/6s of it still in the thermos. She said it was just too disgusting!

 

[Farmwife]

Mlp I hope you don't mind but it's there any guidelines on meeting criteria to be dx with Gastroparesis? Meaning, when they say delay emptying, how long is that?

I'm wondering how long should it take for apple sauce to digest in Grace's stomach and work it's way out?

 

[my little penguin]

Farmwife
The only way to be dx with Gastroparesis is to take a gastric emptying test .
The computer scans what percent of food is left in the stomach at 1 2 3 and 4 hours

Sorta like crohns and scope /biopsy

Symptoms are vague and overlap with alot of things but only the test can tell by computer

measurements

So if the doctors suspects GP they order the test
Can't tell at all by eating applesauce etc.,,

 

[my little penguin]

Exactly how would you know when applesauce made its way out ???
Gastroparesis is mainly delayed stomach enptying
It really doesn't involve the small bowel at all for the test part of of except to verify the food left the stomach and it now all glowy in the small bowel

 

[Maya142]

You could know I guess if you vented her G-tube and there was still food in it 4 hours later. We don't really vent M's GJ tube so I'm not sure.

I agree with MLP - a gastric emptying test is the only way to know for sure. It's a pretty easy test. Gastroparesis is diagnosed with there is more than 10% of the meal left in 4 hours. M had 37% of her meal left after 4 hours.

 

[Farmwife]

Yes, I check/vent her g tube.
5 hours late and there was still applesauce .
I just wanted to figure out how long it takes for the " average stomach" to work.
I'll update her thread in a bit.

Or GI is the one that suggested checking her gtube to see how long it's taking for her food to pass through.

 

[Maya142]

I think it's definitely possible that she has delayed gastric emptying based on that, but I don't think you can know for sure until you have the test.

Since less than 10% of the meal is supposed to be left in the stomach of a normal person at 4 hours, I'd guess that by 5 hours, the stomach should be close to empty.

But again, that's just a guess on my part.

If she is having nausea or belly pain after meals, or is getting very full after just a few bites of food, I'd push for the gastric emptying test.