19 answers

My Son Needs to Gain Weight

My son is 6 yrs old and is only 35 lbs. and thats scary because his 3' 5 in. and so he is fairly tall for his age or within the norm. His sister is 16.5 pounds and she is only 8 months old. There is six yrs between both of them and my son is only 35 lbs. He is still losing weight too. He is a heart transplant patient and has a feeding tube to help him maintain but not gain all that much weight. The frustrating process thats been going on for the last five years is that my son will lose weight and the doc would push for more pump feedings. pump feedings = high calorie milk to regain weight. put common sense in that. An almost seven year old trying to gain weight on "milk" ? Where is the common sense that the doctor is seeing and not me. Well the problem that is so serious is that now he weighs 35 lbs and doesn't want to eat by mouth. It isn't natural for him to eat by mouth. He has the ability and the teachings of eating and the physical strength too but doesn't want to eat by mouth anymore. He just wants those pump feedings. Well he is not gaining weight and now is queezy from the speed the pump delivers the milk into his stomach. So he is not eating by mouth and not physical capable to take pump feedings. he is lethargic, grumpy and not able to go to the doctor. So my question to the moms is..is there a feeding program out there that I don't know about that i can look up? i have medicaid so its not totally impossible to go see a doctor, do you know anyone thats great or highly talked of? Is there medicines to make kiddos hungry? i am on fixed income and cant go out and spend a lot of money on new food systems that just came out and not yet proven to work. Help! Someone with any knowledge that could help me.

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I want him to get on a normal schedule though as well. I know beggars cant be choosers but if i could get him on a morning, noon and evening eating schedule that would be good for the rest of us in the household. If he says "mom im hungry, can i have something to eat?" can i afford to hold off a bit to have him get hungrier so that when he is hungry and lunch is ready for all of us he can join us? do I make him smaller amounts and or just go the unhealthy route, fattening foods first? and then work on the healthier foods once hes gained weight? our first appointment with the feeding clinic at TCH is on A. 1st. thats not the only option i want to look at though. i actually went and left the doctor we were with and got a new one.

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There aren't any special commercial food programs for this. It is a very uncommon situation. It sounds like he may need some kind of behavioral therapy with a diet specialist.

Take him to a regular pediatrician now and explain the situation. They usually know the right people and are sometimes a bit more practical about what's actually going on in the home than the specialist doctor.

My son is almost 7 and he does the same. I have found that some kids do not deal well with change and some just cannot control themselves. What we have done is put a plastic bedliner on his bed as well as buying pull ups. I hope this helps

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My son is almost 7 and he does the same. I have found that some kids do not deal well with change and some just cannot control themselves. What we have done is put a plastic bedliner on his bed as well as buying pull ups. I hope this helps

A.,
My son is a cancer survivor and he was on TPN (intravenous nutrition) for over a year. It provided everything he needed nutritionally since he could not eat anything by mouth due to the mouth sores he developed during chemotherapy. He was weaned off of it very slowly and at first he didn't eat much at all but has started to eat more. He weighs just 40 pounds and is nearly 7. He's very small for his age. His sister is almost four and she weighs 38 pounds.
I think with these special needs kids we just can't compare them to what's considered "normal" by everyone else's standards. Ask your doctor about weaning him off the tube feedings - it's probably an obstacle for your son because he's used to it - it's all he knows. It will be scary at first - he might even lose more weight. Maybe look into supplementing his "by mouth" menu with some Ensure. We tried that with my son and it seemed to help him pick up a little weight.
Sincerely,
S.

A.,
I agree with Georgia M. He may be having a reaction to the milk. Find an alternative health care provider who can offer something different. Its obvious this is not working. I also have a son who is extremely small for his age. He weighed about the same as yours at 6. It may be in his genetics.
my son is 14 on Sunday and still only weighes 69 pounds. Good Luck!

I don't have much advice on a feeding program but maybe he is sensative to gluten. I have a 5 year old blind neice who now weighs about 18 lbs. She started gaining weight once they put her on a gluten free diet. I would suggest taking your son to an allergy specialist and have him tested for an allergy. Maybe he is allergic to something they put in the feedings-it's more than just milk-maybe it's a preservative that they put in the feedings.

another suggestion...if your son has diahrrea and his tummy is a bit distended (swollen)-this is a huge sign of celiac disease-hard to explain but you can read about it on the internet. Good luck, let us know how it goes. Also, I just have to say that I think you are super mom!!!

My heart goes out to you. There is no easy solution. If your son is on Pedia Sure or Ensure or something like that then he is getting all the necessary nutrients so don't worry about that part. My son had a feeding year for the first year of his life and also completely stopped eating as well as throwing up. He got to where he had a great aversion to putting food in his mouth. Our only solution was to take out the tube, cold-turkey. The doctors were surprised at our suggestion but decided to support us as long as we agreed to take him in every other day to check for dehydration. After a few days he began eating on his own. We later found out that he had a genetic condition that made him smaller and he was merely eating for his "blueprints" and was not destined to catch up. However, I don't think that is the case with your son because of his height. if he has an NG tube and not the one that is surgically placed in his stomach then trying to go without it for a time is an option. However, don't do anything without your doctors' permission. As far as magic food systems, none of that ever worked for me. I would also suggest trying some other specialists to find out if there is another underlying condition besides his heart that could be causing this, i.e., a milk or other allergy. My heart goes out to you.

Hi A. I'm a single mama of an 18 month old, so I can sympathesize with you in that way. I used to work for Nursing and Therapy Services of Colorado as a CNA and I remember going to an inservice talking about the feeding clinic here in town. It would probably be a good idea to give NTSOC a call and see if they can help or at least refer you to help. Here's there # ###-###-####. Best of luck! If you're ever interested I'm trying to start a single parent support group.

Hi A.,
I would look for a registered dietitian rather than a doctor. Is there a University near you? One with a medical center/campus or one with a dietetics program? If you can call around and find that out, I am sure you can find a referral to someone who can help. I am sure that it is time to get him feeding. It has been years since the transplant.

Have you consulted a homeopathic physician? I think that sometimes there are situations where other types of practitioners are necessary, and this may be one of those times. His regular doc is obviously ok with the treatment, but you as mother know best, and you should seek another rout of support.

Best of luck and wishes in finding the support you need!

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