Friday, December 05, 2008

An Answer for a Question

****be sure and check back later today, I am putting up a FUN post!*********

The Boob Nazi asks, "why does Little Man have a feeding tube?"
A good honest question deserves a good honest answer.Ultimately, we don't know why. Good answer huh?? I suppose you want a more complete answer than that, so I will humor you. He doesn't eat. Ha, ha, you don't think I am funny? No, really, he doesn't, or won't.
Okay, okay, I will start at the beginning.
We got this boy when he was three months old. I had never formula fed a child before, so I was relying on the doctor's advice in this. We found formula he could/would drink, and fed him the recommended amounts and then he didn't gain any weight. Our doctor had us add extra formula to every bottle and he did fine after that. Until we got to solid foods. The finest grind of baby foods he did well with, but we never had much luck with the chunkier versions. We kept him on his bottle until he was about 2 1/2, (little did we know we were saving his life by doing so) and by the time he was 3 he weighed 31 lbs. A nice weight for a three year old.
We had weaned him from the bottle and well, for the next two years, I keep telling his ped, I am worried, he isn't eating much, I am worried, he doesn't seem to be gaining weight, I am worried, ad infinitum. The ped blew me off, but I was still very worried. Everyone always says, "kids will eat when they are hungry, no kid starves themselves to death." I had already had 5 kids and lived my life by little maxim in feeding my other children. None of them had starved and I am not big on begging kids to eat just one more bite.
Fast forward to age 5. Little Man now weighs 32 1/2 lbs. 1 1/2 lbs more than he did at age 3. Now I blew off my ped and made an appt with the GI doc down at Sick Kids R Us. The doctor was horrified. Our little boy had NO body fat and was so malnourished at this point his body had begun to digest his muscles in an effort to keep him alive. We will amend the maxim, "No NORMAL child will starve themselves to death" autisic kids with lots of other problems, um, yeah, not so much. They wanted to put in the feeding tube right then, but I begged them to let us try him on a special formula they had suggested orally first.
Little Man actually did well with that for about 2 years. We had some problems with some very serious infections he kept getting and that is part of the reason why we put off the tube for so long. The feeding tube is very prone to infections, and so we had to wait until the benefits outweighed the risk. Then he stopped drinking his formula. Long story. He can eat orally, but what he is willing to eat and how much are the problems. He eats less than 500 calories a day orally and generally only what he is currently on a jag for. Right now it is mini hotdogs with cheese in them. By the time we got to the tube last year, he hadn't grown in three years and was having some really weird problems with his blood.
Having good nutrition by way of a hypoallergenic formula has decreased his seizures, (until recently, boohoo), improved his behavior and normalized his lab tests. Hmm, who knew that essentially starving could be so bad for you? So Julie, does that answer your question???

10 Kids Who Want To Play:

Kristina P. said...

Very interesting, Jo. I didn't know the story either. Poor little guy.

r. said...

You skipped the parts about only eating in the shower and the formula company not being allowed to change its packaging.

Not that those parts are essential or anything, just that it's one of those weird tidbits about Little Man that I'll always remember :)

Torina said...

Man oh man. How horrible for the doctor to blow you off. Mama knows best, right?

I'm glad he is so healthy with his extra love on him now. Just hope you can find a solution to the seizures...

Jillene said...

Sometimes mamma knows better than the Dr!! You are such a good mamma!!

The Boob Nazi said...

Yeeessss.... Thank you! I really was curious! Is he the one with autism? I'm very curious about him!

rychelle said...

indeed, mama does know best!

Life as Ashley said...

Wow! What a rough road. Hope he is doing well. Sounds like he's in very loving hands!

Soxy Deb said...

I didn't know the whole story either. My neice (a little over 1) is a non-eater. And I am always telling my SIL that she wille at when she is ready. Now you have me rethinking that.
She has been to a slew of doctors and specialists, but they all say there seems to be nothing wrong with her. She just flat out doesn't eat anything. Seriously, I put so many things out for her on Thanksgiving, just laid them on the table and she wanted none. The ENTIRE day. All she does is drink a little here and there. It's very disconcerting. She is getting taller and is just a stick figure. Now I'm worried. Crap.

Me said...

Jo, you are truly are a saint! Every day you share a little more of your story with us..and I can't help but be amazed at the things you deal with on a daily basis! And how WELL YOU DO IT!

Kyla said...

I hopped over from Baby on Bored when I saw your comment. My KayTar got a g-button in November and it has been AWESOME. She's got a slew of various issues, including sensory problems intertwined with a feeding disorder, and I wish we would have agreed to the tube sooner. It really has been such a load off and even she is thrilled with it.