[betsyj]

This is long so I apologize but it is really stressing me out.

My son will be 21 mos on the 25th. He weighs 21 lbs 14 oz and is 32 inches tall. He is off the chart weight wise (was plotting between the 5th and 10th % in weight), and has fallen from the 25th % in height down to the 10th.

Since March of last year he has gained only 2 lbs (and recently lost half that). My son has congenital hemiplegia as the result of a neonatal stroke so also has a dx of cerebral palsy. It is very mild thankfully and in the past 10 mos has gone from scooting to crawling to walking. So he really rushed through a bunch of milestones later then normal.

At any rate our pediatrician dx him at his last two WBV as FTT. We were referred to a nutritionist who gave us good ideas but really felt he was NOT FTT, just on the small side. So, we began adding Pediasure (God I hate that stuff) and really pushing things like avocado, full fat yogurt, homemade custard, etc.

However, even adding a lot of extra calories made no difference so we did a ton of bloodwork and it all came back normal (iron, thyroid) with the exception of a growth hormone. We were then referred to a pediatric endocrinologist who said that growth hormones have peaks and valleys througout the day so she felt there was nothing in his bloodwork indicating a problem.

She suggested the gastro doc, and a sweat est for CF. (!!!!)

At this point I decided that since everything came back normal I was not going to subject him to any more invasive procedures. He looks great-hair and skin are beautiful, eyes are bright and shiny, poops are normal etc. He is never bloated or gassy and is happy and thriving in every other way. He has never had lung issues-colds clear up (and he has had only one sick day this whole winter) and he has no rashes.

Here is a pic of him and I tihnk he is beautiful and healthy:

http://photos-b.ak.fbcdn.net/hphotos..._3341561_n.jpg

So why isn't he growing? I am having second thoughts that not taking him is making me a bad mama. I can't be the only mama of a toddler who is not growing. I keep mentioning to the docs about how active he is and maybe that is why but they keep saying the growth charts take that into acct.

I also know there is a different growth chart for CP, but that is for quadraplegic CP. If I do use that chart, my son is in the 50th % but am not sure how accurate since he is a hemi kid.

We have a follow up visit tomorrow to weigh him and I am getting really stressed because I know he hasn't gained. They are going to be pushing for more testing and I just don't know what to do anymore.

 

[Nosy]

He is beautiful. I clicked on your post because I'm dealing with something similar. Have you looked into food allergies, specifically gluten (not necessarily celiac)? This really impacted my 2nd child's ability to grow, and now you'd never know he was underweight. How does he sleep?

 

[MountainMamaGC]

He looks fine to me. Then again my DD is 23 months and 20 lbs. She has been hugging the 3rd% since she was about 4 months old. She started off in the 10%. I really dont buy the whole chart thing. My DD is happy healthy energetic and meeting milestones. She is growing, a little slower than the other kids but she is growing so I dont see the problem. IMO from what you have told me, he is doing just fine.

I really dont think you should worry. If he is not showing any signs of allergy and he is healthy and happy, then he is fine.

Are you and you DH big people? My DH is big but I am only 5'1. My mom and dad are short, DHs dads side is full of short people. He gets his height from his mom. So it makes sense. If you have short people in either of your family's he is probably meant to be small and there is nothing you can do about it.

 

[leafwood]

OP....did you read my mind

My ds is just 2y. He has had weight gain issues since about 15m when he was dx w/ FTT. We have been through so many tests. Most recently, after ALL the bloodwork was fine we went to the endo who said that one of his growth factors was low but that it could be due to lack of calories (we are still not sure if he's actually eating enough). We did the CF sweat test. It is non invasive. I hated the idea of it but CF was easy to rule out and the endo swore that they sometimes miss cases and if he had it we needed to know.
SOOO, now we're consulting with a very well recommended ped nutritionsit next week to try and get more calories into him. We have been doing feeding therapy since 18m (which was very helpful in encouraging him to eat and eat happily at that). He was scoped to r/o reflux and another esophogeal (sp?) condition which I can't recall right now.
FWIW, we went dairy free at 20m. That helped his appetite a ton, but it's tough to get the calories in.
Otherwise my ds is perfectly healthy, happy, beautiful, not sick, etc. He's chatting up a storm, running around and I'm just not sure what to make of it!

 

[Arduinna]

I have no advice, since I have no experience here but I just had to say your son is adorable.

 

[camracrazy]

Ok, you'll probably think I'm crazy, but lick him!! LOL Somewhere like his forehead.

My daughter has CF and CF'ers excrete a lot of salt in their sweat. I knew before her test ever came back positive that she had CF because she was so darn salty. Also you could expect his stools to be very greasy and unformed, although a very small number of CF'ers are pancreatic sufficient. If you didn't want to do anymore testing on him, you could always test yourself and his father to see if you are carriers of CF.

 

[betsyj]

Thanks for your thoughts.

I have agreed to do the sweat test. But, I will still give him a lick when I get home. And his stools are fine-nicely formed and certainly not greasy or particularly foul smelling.

Yesterday we did find he gained 6 oz but more importantly grew an inch. SO that is grea news.

I also got the ped to admit that if she was not consulting a growth chart she would think he is a perfectly healthy and happy baby.

I feel much better about everything!!