Suggestions please.

[Breeelizabeth]

I'm asking this hoping that someone else has had a baby with a similar issue and had a diagnosis.

DD is classed as failure to thrive and they suspected that a milk protein intolerance may have been the issue. She's been on neocate formula for 7 weeks but we haven't seen an improvement in her weight gain

It's starting to make me feel that perhaps the Protein intolerance isn't the issue at all. She also has developmental delays, a heart murmur (which I've been told by a paed cardiologist could be an ASD or VSD but our paed refuses to send her for testing) anaemia and reflux. She's 6 months and hasn't even gotten close to doubling her birth weight.

She's now choking and coughing up her feeds (even after having specialised teats from the speech pathologist).

Please someone tell me you had something similar. Her lack of weight gain is further affecting her developmental delays and I need help.

 

[Lolly1985]

Hi my heart goes out to you as I know how horrible it is. My son is failure to thrive. He was born two months early and while initial weight gain was good it soon tailed off. He was diagnosed with reflux and pretty much stopped feeding. We were in hospital 9 times getting meds tweaked and he was put on a dairy free diet. We weaned him dairy free and while he fed well by this point he has a massive aversion to milk and his food just didn't have enough calories. He's now 13 months and only just over 14lb We've just reintroduced dairy and he's done well with it. We've been told to add cheese, butter and cream to everything now. Hoping he'll start to gain a little now instead of being static. His consultant has already discussed growth hormone injections. It upsets me but he's just so small I know we may need some help.

His reflux was so severe he once vomited blood, it's shaped how he is. I'm hoping one day we get some good news and I hope sharing my story has helped you feel less alone. What have her doctors said? We were close to tube feeding at times but always managed to just get away with it. Lots of love xxx

 

[Spacey]

My son was diagnosed with a heart murmur, a PDA, at 4 months with failure to thrive, which was only caught after a serious cold when he started having extremely labored breathing. We were in the hospital for almost a week. It was the scariest time of my life. We were told he was in the beginning stages of congestive heart failure and there was too much fluid around his lungs. At the time, he was only 11 lbs. He was also having trouble with eating; coughing and choking. The cardiologist we were seeing in the hospital put him on some meds to help drain the fluid from his heart and lungs, and a higher calorie formula mix to help with his weight. He has been doing pretty well with that. He is on a 22 calorie formula diet, and while he still does have spit up issues, overall he seems fine with it. He is actually gaining a little weight, now at 7 months he is 15 lbs. He was/is also slightly behind with his development/mobility, but he is slowly catching up... and this is just with the medicines and higher calorie formula.

For diagnosis, they had to sedate him and do an echocardiogram . It was heartbreaking to watch, but necessary. Now we know what it is and can fix it. He is scheduled for surgery tomorrow to close the PDA.

For him, it is the heart murmur that is the cause of all of this. I think it might be worth having it looked into more. I really hope you get some answers!! I know how scary it is!!