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preggersINschool25
member
Difficulties feeding?
preggersINschool25
member
My son is not interested in eating. It is a battle to get him to finish 2oz of purees and 4-5oz of formula. I have tried spacing out the solids and the formula. I have tried solids then formula, formula then solids. I feel like I have tried pretty much everything. He is less than 5% on the CDC chart, so letting him go without eating isn't really an option.
We do a dreamfeed and we are still only getting 20oz of formula and 4-6oz of baby food in him each day. He doesn't typically show signs of hunger and we space out feedings every 4 hours except for 8 hours during the night. If I go longer inbetween feedings then I can't get in 5 feedings that day.
We had a swallow study today and it shows that food is penetrating his airway, but he is not inhaling it. They didn't give me a plan on how to feed him better, they just told us to keep doing what we are doing because he is growing on the same curve. I was given some recipes for thickening formula and making it more calorie dense with the advice of "try whatever you want".
He is 10 months old, is globally developmentally delayed (most skills at 4 months or less) and has hypotonia. We do not have a diagnosis for his issues yet.
Please help me. I want to cry whenever it is time to feed him because he just gurgles his formula, bites the nipple, clenches his gums together to not let me put the nipple in or clamps down on the nipple in his mouth.
So, my question is - Has anyone had to deal with this? Does anyone have any advice for me? What more should I be doing?
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Re: Difficulties feeding?
My DD is almost 2 and we're very much in the same boat. We're gaining about a pound every 3 months. She's 19 lbs now.
I went to speak with a nutritionist. She gave me some recipes and ways to bulk up her bottles. DD doesn't self feed and we think a big part of her feeding refusal is because she wants to be independent and doesn't know how. So her feeding therapist is working on that, we're working on that and in the mean time we can only do so much.
Supposedly I'm supposed to get 1142 calories into her a day. I'm lucky if I get 800 into her. She's on 2 pediasure a day, 1 8oz bottle of concentrated formula, 2 211 calorie meals (due to my work schedule 2 of her three bottles are given to her within a 2-3 hour window and she won't take a bottle from her dad or her babysitter. We're skipping forcing dinner into her and trying to spend dinner time together and teaching her about social eating and enjoyment of food. She gets to play with a dollop of whatever we're eating in the hopes it might make it to her mouth.)
I would suggest you see a nutritionist just to get some ideas to bulk up his bottles, if nothing else. You'll be frustrated, upset, but have something in your arsenal to try to help this.
You can't force a kid to eat. And if you do, eating will be a lifelong problem. I'm sorry you have to deal with this as well.
Gurgling, penetrating--this doesn't sound like a lack of interest but rather that eating is PAINFUL for him. While on the day of the swallow study it showed that he is not fully aspirating, some of the food is beginning to go down the airway but he is able to clear it before it gets to the lungs (keep in mind, gurgling indicates that he IS aspirating some of the time). You have had that happen before and it HURTS. Imagine doing that every time you eat. It isn't that he isn't interested in eating, he's avoiding a painful experience
You need to find a doctor and a feeding therapist that will help you learn how to feed your child in a way that is less painful. Thickening liquids, using different positions when feeding, using different cups/bottles that limit the flow and/or position it differently in the mouth, etc.
My daughter has the same issue with clamping down and refusing to eat - but her swallow study was fine. We try everything to get food into her and extra calories - cake frosting on her pacifiers, chocolate milk mixed with formula.
If you are in the US, make sure you check out your state's early intervention program. You should be working with a speech or OT specialist on feeding issues.
For extra calories, you could try duocal or benecalorie (both sold via amazon). You may want to also talk to a geneticist and neurologist as well as a pediatric GI and nutritionalist.
While I can't say we are in the exact same spot, I would like to say we are close. My DD has been refusing bottles/food since 9 weeks old. We did a swallow test (fine), endoscopy with biopsy, allergy testing, multiple Ped visits, etc and nothing showed up. She was put on Prevacid at 10 weeks old, which didn't seem to help much. She got ear tubes, and that made a bit of a difference. But, before that, she refused all foods, and only ate 8-12 oz of BM per day. She is now 13 months old, and eats about 20 oz of BM/day and a bit of food. We have been working with a private feeding therapist (SLP) and a feeding therapist through our EI (OT). They have helped some, but it really is just a day to day struggle. I would implore you to check out: https://community.babycenter.com/groups/a6738406/bottle_and_food_refusers_dealing_with_feeding_issues_in_infants_toddlers_and_young_children and https://community.babycenter.com/groups/a6728245/bottle_and_food_refusers.
Both are VERY helpful for those experiencing eating/feeding issues, and the issues range from SN, preemies, etc. I found the link by someone who posted it here. They have been a life saver for me. I also joined P.O.P.S.I.C.L.E, which is an advocacy group based in AZ for children with eating/feeding issues. I have a mentor through there which has been really awesome through all of this. Lastly, you may want to check out some of what Dr. Toomey of the STAR center in Denver has on the web. Very helpful for food chaining, desensitization, etc. Not sure about the hypotonia, as I am sure you are probably consulting with a PT on that, but I am sure other moms on those sites have had similar struggles, and may have good tips.
Good luck- and please PM me if you have any other questions. I want to help and give back, because so many people have helped me.
The gurgling is exactly how you would gurgle mouthwash. He seems so pleased with himself when he gurgles and clamps down on the nipple. He more acts like he isn't hungry instead of acting like it is painful.
He had the same level of penetration even with the thickened formula.
We have been doing OT through EI for 3 months, just started ST and we have a PT evaluation next week.
We had an MRI of his brain done a few days ago and he has a genetics appointment in the middle of January.
I speak from experience...don't discount discomfort.
Your child is used to this happening so he is not going to act out in the same way he will if he gets his finger pinched since he has learned to tolerate the pain. My child NEVER acted as if she was in discomfort, yet was silently aspirating. Because this was the only way of eating she knew, she just tolerated the pain, yet would limit her intake. We have an excellent specialist who explained how even a penetration is VERY uncomfortable and painful since the liquid is essentially starting down the airway but being cleared. His swallow study showed penetration which means he is having to clear his airway to prevent aspiration...that is not a comfortable feeling. Try it and you will feel the burn.
You really need to find a feeding specialist who can help you and your child. This really isn't something you can just "try whatever you want." You'll only drive yourself crazy and delay helping your child.