Hello~~ Well this all started when my son was three months old. He has a stoma now. He is now almost 10 months old. At birth he weighed 8lbs. 12oz. and he now weighs 16lbs 4 oz. These last two weeks he has been sick and lost 1lb. I am extremly concernd about his weight but or dr. just keeps brushing me off… So I was wondering if anyone elses children had weight issues…Each check up he has gone to he has dropped a 5th of a percentile… So know I am getting a little concerned… He will be having his pull through done in Aug. and I am so concerned about his weight and what to expect and we are being sent to such a large hospial I feel like me fears and concerns are nothing… I hate it… Does anyone know if rubbing stool on there butt pre surgery helps with the bad rash afterwards? How long were you in the hospital afterwards? What about potty training… Is it possiable? How long do you do dilations afterwards? Thank you for any help… I am such a wreck…
My son had a one stage pull through at 3.5 weeks so I can’t answer a lot of your questions. I do know quite a bit about diaper rash and rubbing poo won’t help to prevent it. Chase was able to poo on his own up until his surgery and he still developed a horrible diaper rash. We use baking soda in his bath water, Ilex at night, and Sensicare during the day to keep his bottom clear. We did not have to do dialations after the surgery- ever. I would be concerned about his weight too- Chase is 4 months and weighed 15 pounds 3oz at the doctor last Friday. He was an 8 pounder at birth too and he had a hard time gaining weight until after his surgery. Since Chase never had a stoma I’m not too sure but I’d expect your son to be gaining better than he is. I think you are doing the right thing by asking questions- keep it up.
God Bless.
Jo
Weight loss happens often when the child has been ill, 11 pounds however is a large amount IMO…it takes time for them to gain it back but they do eventually. My son has always been on the low end of the growth curve but he followed his own curve. There are things you can do to boost the calories of the formula or breastmilk which will help put on weight. When we were trying to boost we added very fattening margarine/butter to his meals and heavy whipping cream.
My son just lost 5 pounds since surgery and now is down from 25% to 8 % but I am not worried because his appetite has increased and I know slowly he will gain it back.
Janel
hi,
Joshua is 7 motnhs he has an ileostomy. He was born 6lb9oz (below average) , and is now 22lb1oz (above average) he is proportional to his height. They were concerned about “dumping Syndrome” and over cautious about him losing weight as he also has CCHS. He was put on a milk that is more broken down-like pre digested, called Pepti Junior by cow and gate. He was on a higher concentration and also any milk he did not take during the day -he has a poor appetitie, he got by NG tube over night with a pump. So really we cheated quite a bit, but he is big an healthy.
Ask about yoour options, i kno this milk was a great help to Josh, but i think the overnight feed piled on the weight. They plan to do his pull thru at 1 year old, so i can’t help with the rest.
Glenda
----- Original Message -----
From: prettybabes
To: gruddell@tiscali.co.uk
Sent: Monday, July 14, 2008 9:40 PM
Subject: [hirschsprungs] Weight gain or loss of and so much more
My son is now 15 months old and has had his Illeostomy since he was 8 months and we too had weight issues and still do. We did the butter in the food and stuff like that. He was born 7 pounds 15 oz and is now 22 pounds which is not too bad it took us a while to get to that point. I too fear the weight loss with his upcoming surgery (next week for reversal). And i also worry that with every belly ache he gets he is not going to eat. When he got his illeostomy he stopped eating and went below the 3rd percentile. I have a feeling we will be doing the same this time. I am not sure what to expect.
Hope everything went well w/pull-thru.
Whenever there’s a poor growth issue wether it be height/weight my very first question would be are their labs good?
Keep in mind children w/HD may have absorption issues, whether baby’s system is too fast and doesn’t allow absorption OR intestine just doesn’t do a good job of absorbing the vitamins/nutrients/minerals. My son has been low on potassium, calcium, magnesium, and sodium. We’re dealing w/growth issues as well.
Obviously, proper nutrition is a must for growth. If you know you are doing well in providing your child the best nutrition possible, as I’m sure you are, then my next question would be to ask the doctor to check labs. I would avoid giving baby butter, ice creams, and other not so nutritious food for the sake of gaining weight. If labs are good, then perhaps you may consider the amount of calorie intake, of course, increasing it w/Pediasure or something that provides optimal calorie AND vitamin intake. On the other hand, if labs show there’s a deficiency, that can be corrected w/supplementing baby w/it…the doctor will prescribe that stuff. Best of luck!