Originally Posted by sbgrace
I recognize your screen name and concerns.
So no stool weirdness/frequency/etc. issues?
I'm glad everything else seems on target with him.
If you want I could do some thinking....what has been tested/ruled out? (allergies, metabolic issues, cystic fibrosis, growth hormones? GI issues?). If you've been there too many times before and it isn't helpful I understand. I suspect I've probably asked before since I recognize you. My son's unexplained FTT turned out to be metabolic but he did have other symptoms. On the other hand you said he is sick a lot. That is indicative to me that there is something else going on. What types of sicknesses? Does he fatigue easily/seem tired? Any reflux? Anything weird about his recovery from illness--taking a long time to recover compared to other kids? Breathing? Anything at all?
On the weight though. Has a dietician actually calculated his average calorie and protein intake? I'm just thinking if it is indeed just that he prefers low calorie foods that is one thing but if he's getting adequate calories but not growing changing diet until you and he are completely exasperated isn't going to do a thing.
Smoothies are the only thing that has worked with my son. I can use avocado and add in a full tablespoon (or two actually....but you've got to make sure you've got a carb balance) of coconut or olive oil. Coconut milk smoothies too. You can do a lot of calories that way. Olives were a hit here.
My son gained a lot when we took gluten out; his blood test was negative. The blood tests aren't foolproof.
I will tell my son's story/history over and over again a million times if that's what it takes to find the answers I need. So here goes again....
Yes, his stool has always been normal - which the doctors tell us rules out a lot of things.
He has had allergy testing (outgrown dairy and soy, still has egg white mildly, and peanut and sesame seed severe).
Cystic Fibrosis and celiac disease were ruled out (we were told both were very negative and not worth re-testing - do people disagree with this??)
He had extensive bloodwork which ruled out thyroid, liver, pancreas, kidney, blood disorders. Though those were done when he was 11 months old when all of this began so long ago. I wonder if maybe they should be redone??
We have asked many times about metabolic disorders and were told that he isn't showing the right symptoms for those. 'sbgrace' - what symptoms did your son have besides the failure to thrive?? We have also asked about brain tumors or other tumors but no one takes us seriously on that because he seems so normal in all other respects.
He was sick a lot because he was in a big daycare centre (which was necessary because I HAVE to work (for financial reasons) and he had to be in a centre due to his severe peanut and sesame allergies. We tried to find private/home daycare in our area, but there was no one with openings in a peanut free home). He caught everything that went around and was sick pretty much constantly with colds and stomach viruses, lots of ear infections, mild pneumonia twice. Luckily he is home now with me as I am on maternity leave for a year and is rarely sick now. He was also healthy the first year of his life with no colds or anything because he was home with me. He had severely enlarged tonsils and adenoids which lead to a lot of ear infections every time he got a cold. We had been told if we could get him healthy and keep his appetite up (since he loses his appetite at the littlest illness) that he would start to gain, but it has been 4 months and so far that isn't helping. His tonsils and adenoids were removed 2 months ago and that was supposed to be an instant fix to the failure to thrive because it was causing severe sleep apnea, but that also didn't work (the apnea is gone, but still no weight gain or growth).
What else...he has asthma for which he takes his fast acting inhaler only when necessary and a steroid inhaler (Flovent) only when he has a cold (otherwise he has several asthma attacks a day). He also has eczema which is under control right now.
He had severe reflux as an infant, but that stopped once we figured out the cause (dairy and soy allergies). He still vomits frequently. Sometimes when he chokes or coughs and other times for no apparent reason. We are told he has a sensitive gag reflex. The vomitting has us a little concerned to say the least.
No one has calulated his actual calorie or protein intake, but we were seeing a dietician at the failure to thrive clinic we were going to. We think that though he is a poor eater at times and is really picky that he still consumes enough at the end of the day, but we are taking their advice and continuing to pump him full with as much calories and fat we can. It just isn't working...
The gluten thing has me intrigued. Your son's test was negative, but he gained weight when you took gluten out? How long did it take to see results? I know people live with gluten intolerance, but removing it from my son's diet seems like a nightmare. His primary food sources are all full of gluten (he especially loves bread, zoodles and cereal (Special K only)). I would hate to remove all his favorite foods and have him lose even more weight - that would be devastating.
I will happily take any suggestions or advice. We are desparate...