GG0429's picture
GG0429

Baby NOT gaining weight!!!! HELP

Hi... Hope somebody can help because we are very very worried.... My niece was born at 7 lbs 6 oz. Mom had gestational diabetes and delivered 2 weeks early. She was told everything was ok but they did have concerns with her breathing at first, but she was sent home as planned. She has had eating problems since birth. She has never latched properly to anything. They tried every bottle known to man and even breast feeding and it never made a difference. She has been underweight for most of her little life. She is no longer on the growth chart. She is now 11 1/2 months old and has gained NO weight in the last 2 months, she only weighs 15 pounds. she has been under a pediatrician's care since she's been 6 months old. They ran all sorts of blood, urine and sweat test and those have all come back normal. She still cannot support her own weight, she does NOT stand, she cannot sit alone for more then 5 seconds without toppling over. She has been on solids since 6 months and that has proved to be difficult for her as well. At 9 1/2 months mom was told to add butter and mayonnaise to her food to add extra fat in her diet to hopefully help her gain weight. Well apparently that has done nothing to help since she has failed to gain any weight. MOM is pretty much force feeding her to get food in her, she doesn't know what else to do. She is waiting to see a Neurologist. They are also waiting to see a geneticist. Unfortunately there are waiting list and it will be 1 month before she can see the neurologist and 3 months before she sees a Geneticist. Has anyone else ever had similar problems??? Any suggestions??? We are really worried about our little peanut...



concerned mom's picture
concerned mom

It sounds like these parents are doing all the right things. They may also want to consult a nutritionist. I never faced this problem w/ either of my children, but if I were in their shoes, I'd be exploring all options as well. Have they tried a Developmental Pediatrician or an ENT?
Cld this be something physical maybe? Or possible a sensory problem? What about when she does eat? Does your niece gag or spit up her food? Does she have any other reactions? Also, what is her disposition like during the day, and especially during feedings? Does she seem uncomfortable, irritable or like she's in pain?
If the parents can't get to these drs right away, they shld consider taking their daughter to a children's hospital for more tests. If she had breathing problems at birth, maybe there's an obstruction of some kind that's interfering w/ her eating. I don't know. I can only guess. However, I wouldn't overlook any possibilities. The parents shldn't wait either.
Keep us posted on how your niece is progressing.

GG0429's picture
GG0429

When it comes to solid foods she seems to get them down alright. She still spits up as much as my boys did back when they were 3-4 months. When it comes to her bottles, she sucks in so much air trying to get the nipple in her mouth properly that she ends up throwing up due to air bubbles. She is constantly flailing her arms and legs around to the point she is very hard to hold. Last time I babysat her, I ended up swaddling her like an infant, hands in and everything, as tight as possible so she couldn't move, that was the only way I was able to give her her bottle. She still has no teeth so it makes it difficult to give her a variety of foods right now. But all her food is homemade.
As far as her disposition, she is teething so she has been a little whinny, but overall she's a very happy baby. Both mom and dad have done everything they've been told to try as far as feeding her. They've also tried everything other people have suggested and still no changes. She is seeing a Physical Therapist and Occupational Therapist as well. Everyone keeps saying the same thing "she should be progressing but she's not" They've all done everything they apparently can do... Trust me, we are far from giving up on our peanut, it's just very frustrating and scary when the doctors and therapist give up. I believe she has an appointment to see specialists at a children's hospital as well, we are very anxious to hear what they have to say. It would be nice to have answers. Thank you for your concerns... I'll keep you posted as I get more info...

junieg's picture
junieg

You mentioned a vast array of specialists, but no Speech and Language Therapists. Do you know if she is being seen by one. SALT's deal also with eating and can help with feeding problems.

It certainly sounds like her parents and family are all doing everything they can for this wee girl anyway. Keep us posted on how things go for her please.

Gibaby's picture
Gibaby

Hi,

My son was born premature at 34 weeks old. He had heart surgery. Later (at home) we were feeding him every other hour to help him gain weight. We have even hired people, at great personal expense to get him fed. He is about 7 months old now. After two- four months he was having a horrible time gaining weight. We met with the pediatricans office nutritionist. She beefed up his calories by increasing the formula (more powder to obtain nutrient rich calories). We moved to MCT oil (adds more calories, $80\bottle)added to his formula. She insisted we wake and feed him every two hours, but it was taking an hour to feed him, so it was absolutely no sleep for us. It was a nightmare.

Finally I said, "Enough, this just can't be sustained" and the pediatrician fully agreed and refd us to Childrens Hospital. We were sent with the diagnosis of Failure to Thrive, a very common term. We have done a littany of tests and are working with a geneticist. This is the most frustrating feeling...not able to help our son gain weight and more imporantly catch up weight and growth despite severely increasing his calories.(His formula is like pancake batter. I think he is exhuasted trying to suck it via a nipple. I think he has a slight aversion to eating. He also tested positive for Aspirating his fluids). Our next appt I assume they will suggest a GI feeding tube placement. I do know it is important to do that growth so he has energy to develop.

Also working with a geneticist. Have you had any luck yourself with your situation since the last post?

I am looking for support groups..or just people to touch base with. It is incredibly difficult to deal with.

Thanks.

Only2boys's picture
Only2boys

Hi! Just want to give you support and tell you to hand in there. My oldest son was low on the charts and I was also told to put butter in his milk and also ice cream too. He did everything developmentally on time, but was small. Around 2 or 3 he started catching up and now is right up with the other kids. I remember I worried to death.

As I think back I wonder if some of his problems were sensory issues. He didn't like meat for quite some time, but eats it now.

Another thing that was suggested for my son at one point was those ensure shakes so he got the calories.

Could this little one take a sippy cup? You may have better luck with this then a bottle if she is having problems sucking. Also a straw could eventually make things easier. Could she be tongue tied?? Did they check that out?

I would wonder if she is having trouble tolerating the food and something is either wrong in the stomach or maybe she is having digestion problems. Did they do any scans on the little one? Sometimes lack of muscle control is diagnosed at CP.

I do wish you guys the best. I know I was in constant worry with my son and unfortunately the pediatrician in my case made it worse.

Hang in there.

acitez's picture
acitez

If you haven't already, tell the hospital staff your concerns about the fatigue problem. Often, family members are aware of things that the professionals are not. That is one of the reasons that people who are hospitalized recover more quickly when they have family members stay with them most of the time.

I hope you are able to spend a good part of every day with your son. I know that can be difficult to arrange, but he will do better if you can spend more time with him.

simtacs's picture
simtacs

I care for a baby whom I would diagnose with failure to thrive, although I am not a doctor, merely a caregiver.This baby is 9 months old, has the scrawniest chicken legs, hasn't gained weight in about 6 months. She looks pale, but is otherwise very happy. Lately she hasn`t been able to keep much food down. She throws up everything at least once a day. Her mother was nursing her for a while but as the baby stopped gaining weight, she started supplementing with formula. The mother then started adding baby cereal to the bottle and recently some sort of carbohydrate powder meant to pack on the calories. In my opinion there has been no change in her weight gain since I began caring for her two months ago. In addition her muscle control is extremely limited. She can roll over front to back and back to front and hold her head up while on her stomach, but that`s it. She can not sit up, her neck control is very poor, however she can wave. She just looks so frail, I`m extremely concerned about her. Her mother, in my opinion is just now beginning to see that her baby might be facing a serious health problem. Until now she has been in denial about her baby`s condition, afraid of having her baby poked and prodded, but ENOUGH IS ENOUGH! It`s been 6 months and she`s just not thriving. Her muscles are so weak that she just lays around most of her waking hours (when we're not holding her). It takes too much effort for her to move so she gives up. I feel for her and her worried parents.

Any suggestions?

anniesophia's picture
anniesophia

so i read your post and it has been one year? how is she doing?
my one year old just got diagonsed with "failure to thrive" I didnt even know it existed until my little one. He hasnt gained any weight for 5 months and the pediatrician that we were seeing had no concern considering he was meeting his developmental milestones. As a mother, I knew fromt he time he was 4 months that he had eating problems. he will not nurse unless its during the time he sleeps .. so he nurses unconciensely (spelling questionable). He goes for his one year checkk up and I had a break down..so I saw another doctor and he diagnosed my son. told me to add butter and fat in his diet.. how would i do that when my son refuses to eat. i force him to eat and its really energy draining for me. i am very curious to see how your niece is doing because I am so worried for my son. theyve taken blood and urine samples and those came back normal.
Please let me know how she is doing today.

2xstepmom's picture
2xstepmom

It would be rare to get a reply from an original poster nearly a year later. Have you taken your child to see a developmental specialist? Is there a children's hospital such as A I DuPont in your area?

anniesophia's picture
anniesophia

i figured its been a while.. but worth the shot. thanks for your reply. they found that he has a urinary tract infection and is under treatment right now. they took a huge tube of blood from him this past week for futher testing. i dont know what else to do but wait.. he's losing weight and wil NOT eat anything. the doc gave us some high calorie formula, but he will not take anytihng other than breastmilk when he's unconcious.. while sleeping. do you know of anyone with similar problem with positive results? i need hope. thanks.