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Crohn's Disease Forum » Parents of Kids with IBD » Diet/Cooking for Kids with IBD » On Modulen and not had any for 24 hours!


10-22-2011, 01:14 PM   #1
Bubbly
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On Modulen and not had any for 24 hours!

Well update on earlier post, tried everything, and my 12 year old son is refusing to drink modulen, we have mixed it with crusha, nesquick, done a smoothie, frozen it all to be met with no!

He had been drinking it at the begining but he said he feels sick, cant swallow and it hurts his throat, it is tearing the whole family apart watching him!!

Not sure what to do, to we go to hospital, or stick it out for another 24 hours!!

Please help somebody, we are at our wits end!!
10-22-2011, 02:34 PM   #2
DustyKat
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Hi Bubbly,

I have read your other thread and if Modulen is the only supplement they are willing to have you try then it is sounding like the NG tube may have to be the way to go. I guess it may well solve the issue of the amount that needs to be ingested too. Enteral/Elemental would be the preferred way to go, failing that he can take Prednisone but steroids can have nasty side effects.

Does your boy have diarrhoea?

Is he drinking water?

The thing you are really going to have watch is he doesn't become dehydrated. You can well go without food/modulen for a couple of days but he must at least have water. If he isn't then you shouldn't wait around. Look out for these type symptoms:

-Dry, sticky mouth
-Sleepiness or tiredness ó children are likely to be less active than usual
-Thirst
-Decreased urine output ó eight hours or more without urination for older children and teens
-Few or no tears when crying
-Dry skin
-Headache
-Constipation
-Dizziness or light headedness

Good luck and keep us posted!

Dusty.
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10-22-2011, 03:39 PM   #3
Tesscorm
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I wish I had an easy answer for you! As my son is a picky eater, before and since diagnosis, I do understand your frustration and worry. My son's refusal to eat certain foods has caused many an argument at home (for years!!!).

I know your son is only 12, so even harder to convince but, perhaps he needs to be gently made a bit more aware of the importance of following the treatment and possible consequences of not following the treatment. I wish I could shelter my son from all the concerns, implications, etc. involved with Crohns as I believe just accepting the diagnosis is enough to deal with, however, I do periodically have to remind him that by eating or not eating certain foods, he is risking a worsening condition of Crohns. Iím sure you can imagine itís a tough balance to find (especially with a younger child) Ė not wanting to add more worry and concern on their shoulders but making sure that they understand they are facing a new Ďnormalí and must respond to it. Taking this route would not be my first choice (would actually be my very last choice) for my son or yours but, perhaps, at a certain point it's the better option than not accepting the treatment. I hope I'm not coming across as being harsh, that is not my intention, only suggesting this because I realize that the alternative of not accepting this treatment would be worse.

However, going back to your other thread, and back to the NG tube... before taking the harder line (above), perhaps speak with your son and his GI re the NG tube? It has been a godsend for my son. Contrary to so many comments here about the difficulties (so surprising to me ), it was easy for him to learn. It would have been extremely difficult, if not impossible, for my son to drink the modulen at these quantities. We would have been forced to use steroids (or other medication) as a treatment. It seems that our children's hospital here, in Toronto, is quite progressive in their use of this treatment as a first line option and approaches it with a higher expectation of children. We were not given the option to drink the formula; other treatment options, such as steroids and its side effects, were briefly discussed but not encouraged as a first treatment. My son was simply told that he needed to learn to insert the tube each night, have the feeding overnight and remove the tube in the morning (leaving the tube in was mentioned as a 'last alternative'). Iím sure his age was a factor in how it was presented but, perhaps with this approach, my son was more accepting??? We were told that they have many patients as young as 10-11 managing the NG tube (and actually had one six year old doing it).

I wish I had better suggestions for you, its so upsetting and heartbreaking to have to force your child to deal with these issues.

Good luck
10-22-2011, 05:33 PM   #4
rainbowmum
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Hi

I would ring your gastro doc, my daughter was the same this week only taking one drink in the end so she has a tube now with E028 (milk free modulen)

I hope he is ok

Shelleyx
10-23-2011, 03:59 AM   #5
Bubbly
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Morning all, thankyou to you all for words of advice and support during the last 12 hours or so.

He had a bad night and was sick during the night, clear as not had anything at all! Have to admit think we are going to go to A&E shortly, bless him, cant go on like this.
10-23-2011, 04:13 AM   #6
DustyKat
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Oh my, poor love...

Sounds like you are heading to the right place Mum, best to be on the safe side.

Sending loads of love, luck and best wishes......keep us posted!

Thinking of you,
Dusty. xxxxxxxx
10-23-2011, 06:12 AM   #7
zipster1
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Hi bubbly.
sorry to hear your weefella havin such a bad time with the modulen. You know your son better than anyone so sounds like you are doing the best thing for him. I know when my son was having issues we used to phone and leave msg with his dietician/ ibd nurse specialist who would then call us bak as soon as they could. A&E should be able to get him someone to help.
Thoughts with you.
10-23-2011, 10:42 AM   #8
Sascot
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Oh dear, sounds stressful. My son was exactly the same (we tried every Crusha flavour possible) - he is 12 as well. I decided to let him choose whether to keep trying or get the NG tube. Even though he is in first year high school - he still chose to get the tube so it must be horrible!
I got used to the tube feeding withing a few days and so did he. We are now on our last week and no one has made fun of him, he is happy at school and still goes to sports (only missed swimming). To us it was not worth making him upset trying to drink it - 8 weeks is a long time.
Good luck
10-23-2011, 11:26 AM   #9
Tesscorm
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Poor kid! I'm sure they will help him at the hospital. Not eating at all has got to be making him feel worse and worse. Hopefully, the ng tube will be an acceptable alternative to him!

I hope he's already beginning to feel just a little bit better, if only from the relief of not having to drink the modulen!
10-23-2011, 08:59 PM   #10
AZMOM
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As much as I hate being inpatient, it sounds like a trip to the hospital was in order! We'll be thinking of you all ......please let us know how it is going.

J.
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10-24-2011, 12:13 AM   #11
DustyKat
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Thinking of you Bubbly and hoping all is going well for your boy...

Much love,
Dusty. xxxxxxxx
10-24-2011, 09:18 AM   #12
Bubbly
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Just wanted to update everyone very quickly.

Been to A&E today to see consultant, dietitician and gastro nurse, he was weighed first, started at 32.1 last week and currently weighs 29.1, sugars only 3.1! Examination of him tummy was that it is very sore and tender on right hand side, which is where he gets his inflammation.

After long chat he has gone on steroids, they believe and so do we that the nasal tube would not be right for him at this moment in time as he has complained off a sore throat and also trouble in swallowing in the last few months before be was diagnosed with crohns, so thought this would cause even more problems.

So steroids it is for the next 9 weeks and told to eat normal foods, plus extra with high calorie content, so been out for extra items for him.

Will give more details later about his medication, but just wanted to update everybody and say a big thankyou to you all for your support and advice over the last few days.
10-24-2011, 02:26 PM   #13
zipster1
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Glad you got some answers bubbly. My sons crohbs is RHS but fortunately SO FAR he has had no issues after the modulen.
You will always be the first to see when your son needs help. As my wife keeps telling me " A mother knows when something isnt right with her child" ;-):-)
Hope things settle down for your family now.
Keep us posted ok? ;-)
10-24-2011, 02:56 PM   #14
DustyKat
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Hey Bubbly,

Thanks for the update hun.

I am so relieved to hear that things have been sorted for your son.....I hope things go well with the steroids and they put him well on the way to remission. Is he prescribed Prednisone or Entocort?

Good luck and keep us posted!

Dusty. xxx
10-24-2011, 07:32 PM   #15
AZMOM
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As much as I hate prednisone, he should feel better pretty quickly....poor baby. Anyway, keep us posted - hopefully you are on the road to a better day now.....

J.
10-24-2011, 09:16 PM   #16
izzi'smom
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Hoping things are looking up for you soon...and thanks for the update! XO
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10-24-2011, 11:07 PM   #17
Tesscorm
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Glad the hospital has responded quickly with a new treatment! Just knowing that he no longer has to drink the Modulen has probably alleviated so much stress for him that, hopefully, he is already feeling a bit better!

I hope the steroids get him feeling well very quickly!!
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