Zachary's appointment today

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Zachary had his hospital appointment for the camera pill....we decided against it. I worried it would get stuck, plus I'm not too confident in his doctor. He did do a scope of the j pouch and saw an ulcer and inflamation so he wants to start Methotrexate and possible the liquid nutrition (I guess with a g tube, not sure how that works). I asked for a referral and told him we were moving so that we could get started with new doctors. I'm hoping everyting starts to work out better.
 
Next time there is a pill cam scheduled ask for a patency pill first. It is a pill the same size as the camera pill that they swallow but it will dissolve if it gets stuck due to a strictured area.

Hope everything starts to work out soon!!
 
possible the liquid nutrition (I guess with a g tube, not sure how that works). QUOTE]


That's the EN we were telling you about. It's liquid shake that provides all his nutritional needs. The tube is inserted through the nose and down to his tummy. Kids his age, the tube is usually left in for the 6-8 wks. Many kids have had this on the forum. More parents will be able to tell you more like Tesscorm.:heart: I know this sound scary but it's worked wonders for some many.:heart:

Do you know when your moving?
 
Sorry to hear about the ulcer/inflammation. Hope the Methotrexate works well. My son had the EN for 8 weeks and it really helped him heal all his ulcers, although his was a mild case. Definately worth doing though. I don't blame you for not doing the pill cam if you're not confident with the doctor!
 
Hugs...
Be sure to ask there is a big difference between a g-tube and an ng-tube.
Ng- tube is placed in the nose and down the throat.
T
A g-tube requires surgery where the tube is into the stomach or intestines through a hole in the abdonmen .
Some have a mic-key button etc...

He could drink elemental formula only to rest the gut.
They are
Peptamen junior -peptide based semi-elemental ( most palatable in the elementals).
Elecare and neocate ( including E028 splash) are amino acid based.

You can order them directly from the manufacturer but some insurances will cover it with an ng .
Doc sends it through a durable medical equipment supplier and it can be covered as infusion supplies since most isdurances have a durable medical equipment clause.

I would try to see if he would drink it orally first.
DS was no foods for 9 weeks drinking peptamen jr orally (7-8 cans a day)
Given how severe his disease seems I would think a elemental would be easier on his system than whole intact proteins such as boost kids or pediasure since they take the whole gut to digest absorb.
Elementals only need a few inches to absorb .
Good luck at the new Gi hope you can get in soon.
I would start the paperwork now since it can take months to get an appt.
 
The dr. is taling about the one that goes down the nose..... but I'm worried... it stays in for 8 weeks? Did anyones child have to wear this to school? How did that go? Just thinking he will have to watch everyone eat at school while he just sits there :(
 
DS did not have tube but he will have to watch the kids eat at school and wear a backpack which pumps the formula in.
You can do it all at night for bigger kids but little kids can only fit so much in their stomach at once so typically the need to wear the pack .
Here is a link to kids who have to wear on for food allergies or other Gi issues.

http://community.kidswithfoodallergies.org/displayForumTopic/content/3682717251787386

http://community.kidswithfoodallergies.org/displayForum/forum/elemental_diet
 
My son is much older so his experience would be a bit different, however, he did do the EN for six weeks. He used the NG tube overnight (and he has continued with it as maintenance/supplement at 1/2 dose). He inserts the tube nightly and removes in the morning.

I do have a friend whose daughter is approx. 10 years old, she did exclusive EN over the summer and left the tube in - she had no problem. At his age, there would probably have to be a bit more care when 'playing' as it wouldn't be too difficult to pull out the tube while playing 'rough'. (No harm/pain would come from pulling it out suddenly, however, that would then require a reinsertion.)

GIs seem to differ re additional fluids with exclusive EN but, our GI allowed my son to have broth, clear juices (apple, etc with NO fibre or pulp), popsicles, freezies, etc. If your son's GI allows this... I arranged with my sons school to keep some freezies in their freezer and I sent him broth to have at lunch with his friends. The broth was a big help as he would have broth again for 'dinner'...

Although my son had his entire dosage overnight, as MLP said, this is probably not possible for younger children. As well, by having the dosage only overnight, my son did struggle a bit with hunger by the time evening came. I would imagine the hunger is alleviated by daytime NG feeds or by drinking shakes.

:ghug:
 
Izzi wore the tube to school for a month at 4.
The EN curbed some significant weight loss and lessened her symptoms while doing EN (although she was allowed to eat, she was rarely hungry after 5 cans of peptamen jr/day). She actually did feedings during the day (she wore a backpack with the pump in it-her doc is not a fan of night feedings).
Here is a pic:
http://www.crohnsforum.com/showthread.php?t=27610
Ask them to use numbing spray on his throat for insertion...Izz complained of a lot of pain, which stopped after a week.
They also did a terrible job taping it but we got it down to a science. She did everything-took baths, went to school, on a field trip, trick or treating lol!
The fist feeding needs to be SUPER slow...she vomited hers up. After they get used to it you can speed it up (a few days).
THat was everything i can think of...any ?'s please ask!
Here's another pic...
337537_2378188987215_1820115856_o-1.jpg

ETA: If you read the first post I really struggled with EN the first week. She cried a LOT. It was the first ng tube they ever did in her docs office, though, and I think that didn't help. There are kids here that insert it regularly that have no trouble with it...I think we were an unusual case. I would do it again in a heartbeat! :)
 
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Hi, my son had the tube going into his nose which was attached to his cheek and then tucked behind his ear. He managed to go to school with it in for 8 weeks in his first year of high school. As far as I know, he was fine and no one ever teased him about it.
The first 2 or 3 days were the worst - he said it felt weird when he swallowed and it did irritate him, but after that he almost forgot it was there.
If you do go ahead - a tip - I always took his Modulen out of the fridge about half an hour before the "feed" because he didn't like the feeling of the really cold stuff moving down the tube. Andrew was just fed at normal meal times with it - I had no pump or anything, just a gravity bolus which took about 15 mins to get his meal in.
 
Also if it peptamen or elecare etc the pumps work better with warm formula.
Most are shelf stable in the little boxes.
Elecare would need to be mixed in a pitcher.
There are special mixing pitchers .
 
Thanks for all of the advice. We are supposed to speak to his doctor tomorrow and find out when he will start all of this
 
Hi hbonsky,
Violet had an indwelling NG tube for three months at age 10 and went to school with it. Had zero issues from peers.
Then she started to remove it herself and reinsert it at night. Four 1/2 years later, she still does this.
However your fella is so little you'd likely leave the tube in.
Her doc did suggest a PEG tube at first as he didn't know if she'd be willing to live with the NG for years and we both knew we wanted her to be on formula until age 16 when growth is done for girls.
But the tube has been so easy, the PEG was never really considered.

I am sorry to hear of such a young one with this hideous disease. :heart:

Many hugs and much understanding. :hug:
 

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