Pacemaker & eating problems?

Alison - posted on 02/14/2011 ( 5 moms have responded )

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Hello everyone! My daughter got her pacemaker when she was 6 months old, and she is now a very active 2.5 year old. The only issue we still have with her is that she is not gaining weight very well. She is NOT a good eater. This was the original tip-off that there was a problem when she was around 3 months old, and they thought once she had the pacemaker she would start eating well. At her two year check-up she met with our new pediatrician, and she had gained only about an ounce or two since her 18 month check-up. She has given us things to feed her to get her to fatten up, but she still doesn't eat well, and she seems to enjoy healthier food over most.

I'm just writing to see if anyone else has had this problem with a child with a pacemaker? I know it could be genetics, and just the way she is (I was 0% in height and weight growing up, and my husband is only in 28" pants). But I just worry since they don't know what caused the 3rd degree heart block, that there is still something else going on. She is 40% in height, but her weight is only 3%, and that makes her BMI extremely low. Thanks!

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Daniela - posted on 04/26/2011

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Dear Alison,

I have a son with congenital complete heart block as well. From the begining he would not eat, he was around 5-10 percentile, despite me and my husband being very tall. I did everything to try for him to gain some weight. He was such a bad eather. He would dring 2oz milk maximum and that was it. I was literaly trying to feed him whole day. Being a scientist, I researched articles if this is a described problem. Indeed it is. There is an srticle published showing small group of childern with CCHB and showing that they all were gaining weight under 5 percentile. There is no explanation given.



My son was first paced through left ventricul only and in the begining in a heart rate of 70/minute. Later 90/minute, however it was still fixed rate. When he was 1 year old, his wire broke and he had to have a new pacemaker put in, he was given dual chamber system and is now paced based on his atrial rate, meaning he can increase his heart rate as normal child would. Since the new setting, his weight gain just took off. If you saw his weight gain curve, it is so obvious, nothing in first year, and now he is 50-75 percentile. For the first time he asks for food. To me it is clear that the heart rate has absolutly everything to do with his eating problem. Everything is still not OK, he is 2 years old and eat baby food only, he cannot chew, so I am putting him in feeding programm, also he was diagnosed with reflux and the medication is also helping him. You might need to reguest extra help - speach theraphy, nutrition specialist, you might need to spike his food to achive the highest callory intake possible. One thing I did is to have a food journal including callorie intake for every day. I started that after one truly dredful doctor visit, when there was talk about feeding tube if he is not gonna gain anything yeat again. Only after starting the journal I realized how little he ate and how insufficent it was (the rule is 100callorie per 1 kg of weight, so 10 kg baby needs 1,000 callories just to maintain weight, you need little more to gain weight). My pediatrician also recommended Pedisure for the high callory content. My son does not like Pedisure but I buy him todler formula with vanila flavor. He would make 25% of his callory intake from that. Since writing the callories down , I would not give him anything that is lots of volume and little calories, everything he eats needs to count.

One more thing, my pediaritian, when she saw the article, was telling me that if he does not start gaining weight, she would recommend give him nasogastric tube for night to get in him some extra callories to just get him from that low weight (he was also tall and very skinny). So in short, this is a part of this terrible disease, try to get some more help - food program, discuss the feeding tube for night, try to write the callories down. I will look for that article, in case you want it, I can send by e-mail. Be strong, I know how horrible it is when your child is so skinny and you are doing so much already.

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Laurie - posted on 06/12/2012

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I have a son who though he does not have a pacemaker he has had three open heart surgeries... cardiac kids are notorious for being smaller, and for having eating problems. Your cardiologist should be able to hook you up with a nutritionist that deals with Cardiac Kids... Bless you on your journey.

Tamara - posted on 06/09/2012

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My daughter has had a pacemaker since she was 6 months old and she is now 8 with her second pacemaker. She was born with hypo plastic right heart syndrome...she has had 3 open heart surgeries and 2 pacemakers since 1 week old.. She also has problems with her weight and height..she is only in the 6% for weight and 10% for height.. she is very picky about what she eats and she for some reason also likes more healthier foods to..at 8 years old she only weighs 42..I never thought of it being caused by the pacemaker..what is the disorder that your little one has?

Cindy - posted on 09/26/2011

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have the same problem but my twins love food and eats it but dosnt gain any weight or much still trying things so they gain but the weight gain poses a prob since both have complex chd and as soon as one baby gains a certain amount of weight she starts to go into heart failure but we need her to gain 7 kg so she can have the fontan but have u tried pediasure

Erin - posted on 06/06/2011

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I know that this is an older post, how is you daughter doing now. My daughter is just now 2.5 with a pacemaker since she was 3 months old and too is under weight. She is only at about 5% for weight. I have noticed lately that she likes to eat like four smaller meals plus snacks. She too prefers healthy foods. Not sure if it is just a toddler thing or that her pacemaker is taking up room so her stomach can't expand as much.

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