Modulen only diet

[jackie1967]

Hi my 12 year old son has recently been diagnosed with crohns disease. He has been put on a Modulen liquid diet and is not allowed to eat anything at all. He has been on it fine for the past 9 days and drinking his required daily amount. He woke up this morning and flatly refused to drink anymore of it. I still mix it up for him and give it to him to drink but he will only drink a few sips (just to please me) and then refuses to drink anymore, he says he can't face drinking it all the time. The difference in him since he started taking it is remarkable, no diarrhoea, no stomach pain, etc, which he had constantly for the past 5 months and was on the loo at least 10 times a day, and now he is transformed. He wants me to look into a nasal tube for him to be fed through that. Does anyone have any experience of this. I am worried he will not be able to cope with this and once it is in then it has to stay in until he has finished the 6 week course. I have spoken to the hospital today with regards to them inserting the tube ASAP as he is not eating anything else and they are going to get back to me. But I am not sure that he will tolerate this. Does anyone know if you can feel the tube in the throat all the time, and up the nose and how do other kids react to this treatment. Is it bearable, and once inserted did they wish they hadn't had it done. The only other treatment they said was steroids which would be a 40mg dose (not sure how many times a day) and for 3 weeks and then to slowly come off them, but the doctor said it would cause a lot of side effects especially with moon face which would be noticeable for 3 months. Not sure what to do for the best so thought I would drop a line to see if anyone else had been through it themselves so they could give me some advice.

 

[Jmrogers4]

My son 13 did 8 weeks of drinking and I think if we had to do it again it would be NG tube. I got tired of nagging and trying to keep track that he had drank the required amount. Some kids put it in every night and take it out in the morning and do nightly feeds, other kids leave it in the entire time. There is a youtube video of a young girl inserting the tube and she is quick.
From what I understand is that you can feel it at first but quickly become used to it and don't even really notice it. I think the trick is using a small tube 6FR. I don't know if you have much option if he is not drinking as he needs the nutrition provided by it.
We did prednisone when my son was first diagnosed and he hated the side effects which is why he choose to do the drinks instead of prednisone to control his last flare. He absolutely refused the prednisone.

 

[my little penguin]

We bribed DS . He drank EEN for 9 weeks.
We paid him by the week as did grandparents .
He was 7 at the time .
He has done pred twice .
Moon face mood swings night sweats ...not fun.
We did DS 's like meals
Two in a water bottle for breakfast
Two for lunch at school one for snack after school
Two for dinner and one at night if he was still hungry.

He was allowed shaved ice with sprinkled cane sugar on it .
Sugarless gum sometimes
Sugar only candy ( cotton candy I made using dum dums)
Or silicon molds with sugar plus water to make sugar cookies or lollipops

We bought fancy straws with things on them
Fancy covered disposable coffee cups.
He could drink out of wine glasses or other fancy glasses if needed .

Good luck

 

[SupportiveMom]

Just did NG tube feeding. My daughter also chose it like your son is asking. It can be a great thing if it works for you. I think my daughter couldn't tolerate the formula and through a series of unfortunate events she stopped at just after 2 weeks because she vomited out the tube so much. The tube she had required us to go back to the hospital every time it came out so by the 4th time I think she had it. Getting the schedule down with pump feedings and whatnot was a lot to learn at first but worth it. She opted for the NG tube because she was losing weight so fast she knew she couldn't keep things in long enough to even maintain her weight.

After the 2 1/2 weeks we had no choice but back to go full dosage prednisone (40 mg). I wish it could have worked for us & have hope it could in the future. I do have to say it was the most exhausting 2 1/2 weeks of my life. Between scheduling a home care nurse, scheduling the feedings, set up & clean up the feedings were all we had time for.

If I had to chose all over again I would only chose the prednisone if truly you get to taper. Short term usage in prednisone isn't bad. (moon face I can deal with, mood swings with a teenager STINK) Long term (like what we keep coming back to) it is not a drug to be on.

Welcome to the forum!

 

[Willowcat05]

Hi, my son has done Modulen through ng tube 3 times for 8 wks each time the first time he tried drinking it but couldnt even with crusha in it.As to feeling it in his throat he will only feel it when its getting insertedonce tthe guide wire is pulled out the tube should soften and he wont feel it as to inserting at night and taken it out in morning I think this is only in America dont think its allowed here my son went to school with his in and his school friends were really great he didnt get an stick about it school was also great gave him the use of the medical room to do his bolus at lunch time. Hope everything turns out alright.

 

[Sascot]

My son did 8 weeks through the NG tube and it was totally worth it. He really hated the taste and was so relieved not to have to drink it!
It took about 2 days for him to get used to it and after that never felt it. No one at school teased him either.
I fed him at mealtimes and snack time with a bolus and he was allowed Fox's glacier mints and 7up for something with taste, my son had one glass a day. I would get the tube in ASAP so you don't lose the benefit of the last 9 days

 

[Ands]

Jackie, my son, also 12 did Modulen for 6 weeks. The first bit was via NG tube but when he knew it would have to be replaced started drinking it and the tube came out. J drank it straight from the fridge, so really cold and we added crusha to it for some flavour.

Sadly it didn't achieve alone what he needed it to so we ended up doing 6 weeks on predisolone as well.

Sorry you've found this forum but I see you're nearby me in Somerset!!!!!

Ands xxx

 

[zilla7777]

I've done 3 rounds on it and usually use it to supplement my current diet, and I have noticed that it tastes MUCH better when refrigerated overnight. It must settle or something, I'm not sure what.

I know it isn't just the temperature, because a shorter time in the freezer just doesn't make it taste different (and I mean the change is like night and day)

I also use Banana, Strawberry and Chocolate nesquik (as recommended by the doc) to change that flavours up a bit.

 

[SupportiveMom]

Great idea zilla - I am going to try the nesquik!

 

[AZMOM]

Jackie1967 - we have done steroids. More than once. About to start our adventure with nightly EN feeding through an NG tube. My daughter is 11.

My understanding is that we will put the tube in at night and take it out in the morning.

J.