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So i've posted a few times on my 13 year old boy, he was released from hospital on 12-23-09 with a feeding tube.  He has since threw that up and we have been doing other orms of calorie/protein drinks for him as he refuses the feeding tube.  My question out there is has there been anyone else who can't get there kid to eat anything?  His last actual meal was about a month ago.  I am getting about 2100 calories down him a day but that is a struggle as well.  I can't afford to take him back to the hospital and of course I am sick right now with a head cold so its not like I can even be there with him.  Everyone here wants me to take him and let him stay at the hospital alone.  Me as a mother just can't do that to him as for he is already very depressed.  IT IS NOW 3:35pm and I made is first drink at 9:40am and he hasn't even touched.  Any suggestions or anybody else who has gone through this?  Please I just don't know what to do....

 Reply posted for melrosesun.

Does he tell you why he doesn't eat? He may have certain thoughts going on in the background that although make sense to him are not rational. He may be afraid of eating and not really understanding that he needs nutrition to improve the way he feels. He also may think somehow that the food it making him ill, again not rational, but understandable. He may want to know that since not eating eventually will make his appetite decrease which in turn means he won't get the nutrition he needs, which in turn means feeling weak and shaky etc., in other words that taking in nutrition in a form which is easiest for his body to handle, may actually make him feel better. I know myself when I'm in a flare or scared I will be the anxiety alone kills my appetite. It's so difficult to know what's going on in someone's mind, we sometimes don't even know ourselves. BTW do the ice cubes bother him?  Personally anything super cold gives me stomach cramps, but we're all different.

 Reply posted for Jonsmom.

He too has it taped on his face, but he still throws up the feeding tube and the formula.  He doesn't like the feeding tube at all, so I try with drinks when he will drink them.  I  use the formula (used in feeding tube), Carnation Instant breakfast, 1/2 cup lactaid milk, 1 ice cube and 1/2 of a banana and I blend together in the blender.  If he drinks 4 of those a day I don't make him use the feeding tube.  For the most part it has been working.  Thank you for giving me your advice. 

 Reply posted for melrosesun.

Oh, do you mean he is actually throwing up the feeding tube formula and not the feeding tube itself?  If that is the case, try slowing down the rate of the formula.  It might be going in too fast and his body is not able to tolerate.  Also, the head of the bed has to be elevated at least 30 degrees or gravity will cause the formula to go back up the esophagus.  I hope this helps.

 Reply posted for melrosesun.

Oh, man.  This is so hard for us as parents to go through.  My 15 y/o son was hospitalized and had a feeding tube inserted.  He actually kept it in at home for six weeks and was hooked to a feeding pump.  It was taped to his face so he was not able to throw it up.  It was very difficult because he couldn't have anything else to eat as we were trying to let his bowel rest.  It really helped put the weight on.  He was 98 lbs. when hospitalized and now he is holding steady at 129 lbs.  Now he is maintaining his weight with 3 Ensure Plus per day.  If there is any way you could encourage your son to keep the feeding tube in, it really helps in the long run.  I know hard it is to watch your child suffer.  Wishing you only the best and hoping he is able to gain some weight soon.

 Reply posted for melrosesun.

Thanks everyone for the support and input.  I started  him on the feeding tube again last night.  Got about 600 calories in him over night, and he ate and drank nothing yesterday except a gatorade.  I started again this morning and 20mins into it he threw it up yet again.  All i can do is keep trying and pray it will work.

 Reply posted for melrosesun.

Funny you posted this today, I was just thinking about you guys....hoping things were improving since his close to Christmas discharge from the hospital.   My heart aches for you and your family.   What I have learned over the 6 yrs of dealing with this disease is these flares don't last forever.  I know when you are in the middle of it things just seem too crazy and the merry-go-round just won't stop, but it will. 

I have had problems for some time with my little one with not wanting to eat.  She eats to live, not like many people who live to eat!  Very, very rarely will she be "starving".   It just doesn't happen.   What works best for her is "grazing".  Instead of eating a large meal at breakfast, we may break it down to 2-3 mini meals.  I keep lots of "safe" snacks in the house and that seems to help with her calorie intake.  It is much easier than battling the "Boost Battle".   I know how frustrating it can be (just dealing with a teen) add a chronic illness and it doesn't help the situation.  All you can do is what you are doing now.....your best.   Those that suggested leaving him in the hospital don't deserve the time of day!   He's a 13 yr old and is hurting, big time.  

If you could get him excited about something that he can't do when feeling sick, but would love to get back to......basketball, baseball, skate boarding, hanging out w/friends, whatever he used to enjoy maybe that will make him want to help himself.  Because that may be the barrier here.   You can only do so much. 

Be well,

Lizzies Mom  

 Reply posted for melrosesun.

Oooh.....it sounds like your "support system" wants to punish your son for not eating???? Sadly, he may already think he is being punished by having Crohns. I think you should go with your Mom instinct and continue to be a non judgemental support for your son.  He obviously has a difficult to manage Crohns right now. That wont always be the case. Things will get better!  It is a human instinct to want to eat foods, but not when eating makes you uncomfortable as it obviously does for your son. This is not the type of anorexia that is actually a psychiatiric disorder! Perhaps your family thinks it is?? He may seem like he is regressing now, but in time he will adapt to a way of life that benefits him.  You say you are able to get up to 2100 calories in him.  That isnt bad for now. There are criteria for hospitalizing:  vomiting, dehydration, weight loss and severe weakness. 

Rather than focus on eating, get him to focus on ways he can help his body restore to health from the ravages of Crohns.  Make it HIS responsibility to talk to his Dr. when he has a concern. Will he read books?  Check the shop CCFA site for age appropriate titles. If he is into computers, he can join an online teen Crohns support group. Finally, I would highly recommend Camp Oasis next summer.  

Wouldnt it be great if all our kids could enjoy a consistently good health and smooth adjustments during their school years?  It is heartbreaking as a parent to see our kids suffer.  Make sure you take care of yourself. You didnt cause this disease either.  You will be in my prayers tonight.

 Reply posted for melrosesun.

I know exactly how you feel! My son has been in a flare since June- he has lost ~ 20 lbs and because of a stricture he initially didint  want to eat. Now he just doesnt even think about food. It is a constant battle. He was started on Megace and that did help. He started eating about a week after he started it- then since he was eating- he stopped it. He is 21 so my hands are tied. He's home from school on break and he lost 10# in 2 weeks- after he gained 5 back from the summer. Talk to your doctor about the Megace. Once his appetite starts to come back he will feel more like eating. My son never thinks about food- if he is not reminded to eat or drink anything he wont. He was prob surviving on about 1000-1500 calories. Good luck- I know what you are going through and it is very difficult to watch- I know how helpless you feel.