Imaboveitall

[Mom2oneboy]

imaboveitall

How long did it take V to get used to the NG tube? How traumatic were those first few times? I really would like to try this with my son but I know I couldn't get him to go to school with the tube. Wondering if he could learn to take it in and out himself?

I ordered the Beat Crohn's book by Oppenheimer last night . The more I read about it the more interested I am. First and foremost the nutrition side of it would make me feel so much better. Getting my kid to eat has always been a struggle! Food has just never been a priority to him. EN also seems like a great tool to have for a flare versus having to hop on steriods everytime. I think he could manage the no food aspect it's the darn tube that concerns me the most.

Thanks,
Shelley

 

[imaboveitall]

HEY, my B&W lovin' soul sister :wink:

Here's how it went for V:
Desperately sick and too sick to argue as she was, I still demanded sedation (Versed was given) to minimize the "trauma" of insertion that first time in hosp. I left the room while it was done. I couldn't watch, I was afraid if she freaked I'd stop them and she NEEDED it badly and fast. Her malnutrition was life threatening at that point.

She was discharged with the tube indwelling and kept it that way for three mos, went to school (5th grade) that way.

Come Christmas break and a reg GI visit and he told her how he had a bunch of cystic fibrosis pts on tube feeding and several IBD cases who all placed the tube at night/removed upon awakening and therefore didn't have to let any of their schoolmates "know".

That was a good sell; we left with instructions to call his office anytime and just "pop in" whenever to have his nurses show us how. Prior to that V was scared of the idea of inserting.
Method: drink through a straw to keep epiglottis closed while inserting and the actual insertion is maybe...8 seconds? NO gagging, coughing, SO EASY, I felt like an idiot for "doping" her the first time for it.

She and I were like...that's IT??

Now some kids may freak so it may not be that smooth for all. V does have big adenoids and a deviated septum and still no probs, though she can't seem to insert in her L nostril (poss due to this?) so if one nostril feels wrong, try the other. When trying to go through her L nostril, she gags.

V's GI asked if she'd do a video to show other kids but she refused.
Feel free to PM me if any other info desired.

Her symptoms of low grade fever and gut pain disappeared within HOURS of commencing the feeds.
No drugs and she got better fast. She got 3000cals ROUND THE CLOCK for 30 days, that's 24/7 hooked to the pump. (but she was near death at dx; your boy prob won't need this much )
Gradually reduced , now she gets just 1200cals over 8hrs while sleeping.
I've posted her stats before: 55in tall and 59lb (down from 78lb) at dx in Sept 2008
Jan 2009: 57.5 in and 99lbs (Yes that is CRAAZY catch up growth Also lost a bunch of baby teeth in like three weeks that had stalled when her malnutrition started)
Currently: 63in 134lbs

With love...:hug: I hope this proves useful for your boy.

Edited to add: Tesscorm's boy Stephen also places/removes tube, I hope she shall add her story...

 

[imaboveitall]

Forgot to say also, tube size makes a BIG difference in ease of insertion.
V uses the same size tube she did 3.5 years ago, it is an infant sized tube just a tad bigger in diameter than a piece of cooked spaghetti.
You want the smallest tube size you can get for him.
Also rate of pump. V was started at 30mls/hr (that is one oz per hour) due to fears of refeeding syndrome (which she did develop as she was so starved) slowly increased over 24hr to 120mls/hr for 24hrs; ten-twelve cans of formula per 24hrs continuous feeds.
Now she's up to 160mls/hr (still pretty slow, some do 300mls/hr) overnight.

 

[Mom2oneboy]

Thank you SO SO much for the info!! You are so sweet to take the time to type all of that. V's growth stats are amazing. My guy is 60 inches and 79 lbs. His doc doesn't seem concerned about it. He said if I wanted I could give him Carnation Instant Breakfast with whole milk for additional calories but that he did not want that to replace a meal. His iron and protein levels were a tad low but Calcium was good. On Tuesday I'm going to ask for all those tests to be done again as well as Vitamin D, etc.

Wish you lived closer so V could give S lessons on the EN tube

Thanks again for the info. You're the best!
Shelley

 

[imaboveitall]

Nah, I'm just a neurotic mother who had success and wishes all could have it too...:heart:
It's interesting (and irritating and confounding) how all their presentations are SO DIFFERENT.
It sounds like your boy is a bit underweight but not starving or anything like V was. You may be able to get him up to weight with smoothies etc, but I'd make them with Pedisure not just milk.

V's doc is known at the hosp and abroad for being a nutrition fanatic when it comes to IBD. When I first resisted the tube in theory (this was before she was knockin' at death's door) nurses said (rolling eyes) "Dr. **** won't like that, he's allll about nutrition with these pts". Heard the same from a lab guy, too. I guess this makes him an exception as most GIs seem to prefer drugs.

I'm so glad I helped a bit and I'll be rooting for you and your boy. :soledance:

 

[dannysmom]

When was V allowed to eat? I know she has no food restrictions now while on EN ... but wondered if it was like that the whole time.

 

[imaboveitall]

Hey, D'sMom!
She was allowed any and all food from the start, BUT her dysmotility was so severe (delayed gastric emptying, even though disease was in TI...WTF?) I think he knew she'd not eat much and she didn't for maybe a month, so it was prob 80% formula anyway.
She just started eating more and more, and by six weeks or so after starting was eating everything and has continued to do so from then until now.
We of course reduced amt of formula as she ate more, and maintain on the 1200cals now, no matter how much she eats during the day.
But she is a big framed girl, (size 10.5 shoe and big square shoulders etc) and can consume 2500cals and not get fat.

 

[DustyKat]

Hey Julie,

V was anorexic, I mean that in the medical sense: loss of appetite, at diagnosis wasn't she? If so then that can cause delayed gastric emptying.

Dusty. xxx

 

[imaboveitall]

Dusty, yep, anorexic but we learned was due to the delayed emptying. She also had early satiety.
Interestingly, when on the pump she was able to eat; it corrected the motility somehow.
Ex: after the first 30 days of continuous feeds, she returned to school, which was around six hours off feeds per 24. She'd have the early satiety at school and could barely eat lunch, but when hooked up would get hungry pretty quick.
As we lowered time on the pump, we noticed that she had more appetite during the time on, than off, and could eat more at a sitting while hooked up. I thought that was the oddest thing.
The disturbed motility took a LONG time to completely correct. It was over a year before she ate large quantities at a sitting.

 

[DustyKat]

Yeah, I could see how the feeds could would make eating more tolerable. Maybe the constant flow and consistency of the feed would set up a nice rhythm of ebb and flow which in turn made the digestion of solid food easier??? Just my musings...:lol:

Just as a side note: Sarah only had TI involvement as well yet all her issues seemed to stem from the upper epigastric region. I still have a sneaking suspicion that the pancreas and it's enzymes may have been playing a role too in the pain and anorexia she was experiencing.

Dusty. xxx

 

[imaboveitall]

Oh interesting...and please expound on the pancreatic role re: pain and anorexia. And why would they have gastric issues when TI is only place involved...God, there's still so much I don't understand about this disease :shifty:

 

[DustyKat]

Sarah presented to A&E a week before her surgery in acute severe abdominal pain. Her pancreatic enzymes were very significantly raised at that point and she was diagnosed with pancreatitis. Less than 24 hours later they were normal again. No treatment she received would have accounted for this.

After reading up on pancreatitis and Crohn's it would seem that although not a frequent EIM of IBD it isn't all that uncommon either to have acute or chronic pancreatitis as a precursor to a diagnosis of IBD.

I just wonder at times if the majority of her upper epigastric pain and resultant anorexia was due to chronic pancreatits, with her acute episode being an exacerbation of this, and that low grade inflammation affected the secretion of pancreatic enzymes that aid digestion. With chronic pancreatitis you can have normal bloods, which Sarah did, and no pain. Plus it can cause malabsorption, weight loss and anorexia due to feeling worse when you do eat.

Dusty. xxx

 

[imaboveitall]

OMG, Dusty...that makes a crapload of sense :ywow:
I never made the connection and her GI has never talked of this...I know pancreatic enzymes were never measured nor mentioned.
That may just answer my question of why did she have epigastric distress and no disease there...wow. You RULE. :heart:

 

[Tesscorm]

Hi Shelley,

Sorry, a bit late here but, basically, ditto to what Julie said.

Keep in mind my son was a bit older, almost 17 when diagnosed, so certainly a bit more mature and understanding of the 'need' for the treatment. But, in any case, he also learned to insert the tube fairly easily. He was able to do it with nurses 2-4 times while still in the hospital and, from then on, did it himself. I would say, within a week, was very comfortable doing it but, from day one (at home) didn't have any problems. As Julie said, insert the tube while drinking water through a straw. I would hold the water and straw and he would insert the tube as he drank (now he does it without the water). And, it does just take seconds. Also, he only does it on his left side. Initially, tried both sides but always had a harder time on the right so just stopped trying. His tube size is 6-Fr.

Initial dosage was 3000 cal per night (2000 ml), he ran it at 200-250 ml/hr (sometimes 300, if we were tight for time due to a late night) (as did Violet, he also started at a much slower rate at hospital). First 6 weeks, no food - formula and clear fluids only). Now he eats all foods, his current dosage is 1500 cal, 5 nights per week.

He had lost almost 20 lbs prior to diagnosis, during first 6 weeks, gained 10+ lbs and, once he began eating again, gained almost another 20 lbs.

Good luck!! I hope your son is able to do this! So far, it's been able to control Stephen's crohns without meds and has taken away my worries over his 'picky' diet!

 

[Tesscorm]

Just a couple more points... do prepare your son that it will feel 'funny' at first. My son said it felt like getting water in your nose. The first few times, his eyes would water and, I think, he had to make a conscious effort to not gag. He does it in front of a mirror so he can 'see' how its going.

I told my son, if he felt like gagging, to visualize just how small the tube really was compared to a regular bite-size that he usually swallows.

Also, once the measurement is made, roll a tiny bit of tape around the tube at the point where it reaches the end of his nostril (this is the measurement of the amount of tube that will be 'inserted'). This way, there's no 'delay' or 'stop' when inserting because you're checking 'how much more' - he can just quickly 'continuously' insert until he feels the bit of tape. (Hope this made sense...)

 

[Tesscorm]

Shelley,

I was thinking of that too... will ask him tonight if I can tape him... hopefully, he'll say yes!

 

[Mom2oneboy]

Shelley,

I was thinking of that too... will ask him tonight if I can tape him... hopefully, he'll say yes!

Oh Tess, that would be SO awesome! If he agrees, I'll pm you my email address so he doesn't have to worry about it being on internet.

Thank you!!