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Wednesday, March 5, 2014

Oh Me Oh My Today I Hate GI


Today I brought Ramya to her 3 month GI follow up.  When we put her on the scale, I noticed she really didn't gain any weight at all since her last appointment.  The doctor brought up her chart, and she's back to not following her curve any more.  She's been home for a year and she has gained about 4 pounds (the average for kiddos is 5-7 a year I guess) and quite few inches, but for a kiddo who now has great nutrition and consistent meals after not having them for so long, they really expected better weight gain.  I would think the fact that she is gaining, though, and not losing weight, is at least a good thing.  She turns 7 tomorrow and currently weighs 32 pounds.

The doctor started talking about g-tubes and all kinds of not so fun stuff.  Bleh.  That's something I really didn't want to hear.  We are just not going there (of course I would if it was really, really, realllly necessary, but for now, we are just not going there).  We really need to get to the bottom of it.  There are just so many factors going on with her, it's hard to know what to think or what the best approach is.  First off, you have a body that isn't used to consistent food and nutrients.  She doesn't have those automatic responses she should.  She rarely says she hungry, and doesn't love to eat.  She eats a good amount, but because that is the expectation, not because that's what she wants to do.  If it was up to her, she'd eat a few bites and be done.  She also can take a long time to eat because she doesn't love it.  There have been days I've sat with her at the table for 1 1/2 hours per meal, multiple meals a day.  Then you have the RAD stuff coming in to play.  Ramya displays pretty much all of the classic RAD symptoms, though thankfully many are not to a large degree.  You can tell when she's starting to feel out of control, and boy does she like control.  She starts getting this nervous energy and just starts spiraling.  This usually leads to trying to control food by not eating.  I can usually spend time feeding her and giving her attention and we work through it, but it's a dangerous practice.  I really try to make eating fun, give her lots of choices so I can make sure that she likes what she is eating and feels in control of her food, and try to give her appropriate choices with food.  She eats a wide variety of foods, which is great.  She also is learning how to eat and enjoy consistent meals in appropriate portion sizes, which is a big adjustment!

The hard thing that I just do not understand, though, is why she isn't gaining more weight.  Maybe she just has a high metabolism, or maybe this is just the way she is, who knows!  It's hard because I'm still trying to learn who she is in so many ways.  I do feel like she should be at least staying on her own curve.  I try everything with her.  If I make a protein shake, she gets chia seed, flax seed, and avocado in it for extra fat.  If she wants chocolate milk, I make it from full-fat coconut milk (we are dairy free, and dairy seems to bother her tummy).  I try to get her to snack on nuts.  I mash avocados for her to dip things in for extra fat.  I cook everything for her in lots of extra organic unrefined coconut oil.  I don't just give her pancakes, I put butter, peanut butter (or sunflower nut butter), and syrup on her pancakes.  Her oatmeal gets coconut oil and walnuts in it.  I feed her sausage, bacon, hot dogs (nitrate free, natural ones, but still!) often, even though I'm not a big fan of processed meats.  I put butter on peanut butter sandwiches for extra fat.  And when she eats chicken, I load her up with skin and fat, which she loves.  I just feel frustrated because I don't know what else to try.  The doctors watch her so closely, which is awesome and I'm thankful for that, but at the same time, I don't want to make problems where they may not be, nor do I want to ignore something that may be a problem.  It's hard!

Ramya has a pediatrician appointment coming up soon, and I plan to talk to the doctor about underlying things that might be slowing her weight gain.  There may be things we can test, like her growth hormone, food sensitivities/allergies, etc..., and try to find some answers that way.  I know that her thyroid functions fine and she was negative for celiac (though we eat gluten-free anyhow), but there could still be other things going on.  I also want to chat with him about feeding therapy and attachment therapy to see if he thinks those may help at all.  Other than that, if any of you have any recommendations, please let me know!!  You can always e-mail me at jamie_lugo@hotmail.com or comment here :). 

Please be praying for wisdom and discernment (I know I say that often, so you can just keep repeating that prayer for me ;)) for us as we try to see if there is even a problem, and if so, what it is. 

 

4 comments:

amanda mcmahon said...

She's growing! They said the average is 5-7 pounds, so she was just below average, right? She did gain? can you go back for a weigh in in a few months/

I know it isn't a lot of consolation, but v is 33 pounds and last year she was also just a pound or so more than Ramya.

Are they using the 'average' weight gain for caucasians or the WHO scale? Even the WHO scale isn't specific to those from the Indian subcontinent. They say it will take another two generations before the issues of hereditary malnutrition won't affect stunted growth.

Was she tested for allergies? If not, perhaps allow her to have a few of the foods that the others don't have if she enjoys them and they don't affect her (if she's been dairy free, likely her body won't like it now though).

This comes from India - maybe see this for some reassurance? http://www.indianpediatrics.net/mar2007/mar-187-197.htm

Jamie said...

She does eat sprouted bread, though the rest of us are gluten free, as well as regular cakes and treats and the such. When I give her dairy (ice cream, goldfish crackers, pizza), she gets diarrhea pretty badly. I'm not ready to make any decisions, not any time soon. I feel like I need to get to know her body better, it just made for a crappy day to go through the appointment.

Amanda McMahon said...

Yeah it sounds very frustrating. Hopefully you can figure it out. Both kids had a cold last weekend and into monday/Tuesday and are down 1 lb each. So pancakes today I made with milk and tons of butter. They are just so active. Riding bikes for an hour and then not wanting a snack after :(

Jamie said...

I think her activity is a big part of it too.... she went from very little to tons! That's a big adjustment for her body! Plus she was sick in January and eating was a huge struggle. She'd try to eat nothing for days and getting food in her happened but not her usual amount and not without a big struggle, so I'm sure that set her back in weight.