As a baby, Max was a chubster, as you could see in last week's bathtime photo. Sabrina has a good 10 pounds on Max and lately, she's been picking him up and toting him around. You know, just because.
Max is a skinny boy. At 7 years old, he can still fit into size 4 pants. At his annual checkup last January, he weighed only 34 pounds and the doctor said he needed to fatten up. Alas, there is no operation that would enable me to transfer some of my fat to him (how genius would that be?!). Max's next checkup is this week, and I'm hoping he's in the forties. He's slightly below average for height, but nothing major.
While Max's slim size is a good thing for his mobility and my back, I wonder about the whys. If he's got a great metabolism then all I can say is, NOT FAIR! Why is it that boys always seem to luck in out that department? (He's also got those gorgeous fluttery boy lashes, another NOT FAIR thing.)
But I also wonder if Max is skinny because he doesn't eat enough. He's not a kid who can just grab a cookie or fruit rollup and start munching on it, though we try to shove in calories however we can—I add olive oil, butter and Scandical, a powder supplement that delivers 35 calories per tablespoon, to his foods. We feed him the most fat-laden stuff we can find—avocado, Haagen Dazs chocolate ice-cream, cheese mashed potatoes, evil Chef Boyardee stuff.
Me at supermarket talking to guy in dairy department: "What's the most fattening yogurt you have?"
Him, incredulously: "Wow, the only thing you ladies usually want is low-fat! Try the Fage!"
Me walking away with complex that I don't look like a woman who needs fattening yogurt.
I just heard about a free iPhone app, MyFitnessPal, that has a database of nutritional content of restaurant and supermarket foods. It also figures out how many calories are needed per day, and tracks calories and nutritional data of meals you enter. I'm going to look into it (for Max AND me)!
How are your kids doing with the weight thing?
One more baby Max shot, for your viewing pleasure.
Emma is skinny too. Not sure why. She eats a lot. Avocadoes and lots of olive oil! Her Daddy is naturally skinny with long legs. I often wonder if she inherited some of it from him, or if it is the CP think. I sometimes wonder if her high tone makes her burn calories faster. I would say she she is well proportioned though. I mean she looks balanced, and I don't really notice that she is smaller than her peers until she is around them. She weighs about 40ish, at age 6. Her height is pretty average too. She has a tiny little waist. She doesn't walk yet without help (a lot of help, that is), and she is getting heavy. Her bedroom is upstairs too.
ReplyDeleteDaniel was nice and chubby as a baby, but he's been long and lean ever since toddlerhood. He's always been tall for his age, which made his weight even more concerning to me. It just didn't seem right that he was in the 75th/80th percentile for height and only the 25th/30th for weight. However, I should mention that Dad can (and does) eat plates of fried chicken and cheesecake, never do a single sit - up, and yet still has a washboard stomach. He has a truly envious metabolism.
ReplyDeleteAnyway, when Daniel (five years old) was weighed about two months ago, he weighed a whopping 42 pounds. I don't know where he hides his weight, because he still looks rather lean to me. He still doesn't weigh much for his height; he's in about the 50th percentile for weight and 75th for height. At least I'm not worried about him falling off the growth charts anymore.
Ah, to be able to try to GAIN weight instead of lose it!
Loved the baby pic...you sure can eat up those cheeks! Faith was always underweight, until she got her G tube at one. Then she made up for it for about a year...got some cheeks of her own! Ever since, she has been right about the middle. She is knockin' on 49 lbs, now at 6. But it has been a constant battle w/ her vomitting.
ReplyDeleteAustin at 7 is 51 lbs and he has been 51 lbs for the last 18 months (went form 60% weight to 35%). They now have him on Periactin in hopes of stimulating his appetite. I also make smooties every night with full fat yogurt (cream top), ice cream, fruit, OJ and protein powder. In the past month he's gained MAYBE half a pound. He's extremely picky so most calorically dense foods are out of the question for him.
ReplyDeleteAs for yogurt... I'll have to check the Fage. She has me giving him Yo-baby.
My dad's side of the family has a fabulous metabolism that somehow skipped over me and on to two of my kids. Seriously NOT FAIR!
Ben was diagnosed with failure to thrive as a toddler and we just could not get him to eat (he also had an uncoordinated swallow that caused choking incidents -- so there was perhaps a good reason he didn't want to eat!). He was eventually at age 4 put on a g-tube in the hopes it would boost his weight and growth by pumping him full of calories at night. In his case, his syndrome is associated with being tiny and not growing at the same rate as other kids. In retrospect, I see how the doctors putting him on special fat-laden diets and me running around constantly with food in my hands trying to get him to eat at every second was not a helpful approach. It led to an over-focus on food. Now, at age 15, we have the opposite problem. He is tiny and because of his pain problems, walking less, and he is a little butter ball. I think we place too much emphasis on size and height and physical growth.
ReplyDeleteSo far, they're both fairly normal, the older being a bit more "sturdy" than the baby. They come from a background of rather naturally thick people (and a few fatsos like myself in the bunch, as well!), though, so who knows how long that will last? I guess not having cable tv helps--there's not much over the air and it's more fun to play/burn calories in the backyard. If they want cable they have to get it at my folk's house!
ReplyDeleteWas there ever a time when Max wasn't cute as a button? He is just...ADORABLE!!!!!!!!
Tight muscles use up more energy/oxygen because they are working so much harder. If they burn up more oxygen they need it delivered to them faster. Thus spasticity does in fact increase metabolism. There is a reason I've been primarily a mouth breather my whole life (you should see me sleeping w/my mouth wide open). You just don't get as much per breath with your nose. Last I checked 6.5 years ago I use 3.5X more oxygen to walk then someone who is my exact body mass. They do some kind of height/weight calculation and measure your CO2 output as you walk attached through wires to a laptop on a cart being pushed behind you by a guy. *fun stuff* I've bounced w/in the same 10lbs since I was 11 (13 years).
ReplyDeleteomg, don't even get me started on how skinny Little Man is. He started out a chubby baby- 8 lbs. 12 oz. @ birth although 1lb of it was fluid:(
ReplyDeleteNow he is a noodle- he is 30 inches long (tall?) and is 14 lbs. 13 oz. Hubby was also a skinny small kid & has apparently passed that onto Little Man. The dietician wants him getting 1000 calories/day. The most I've been able to get into him was around 700- any more & he vomits. It also doesn't help that he's allergic to dairy & doesn't do well with gluten. He is currently on the blood type diet (type A) and doing well. I have found that coconut milk is a healthy fat- 1/3 cup is 150 calories! So that with Avacados & olive oil will hopefully put some meat on his ribs. My goal is to get him fat enough so I don't see his tubing from his shunt going down into his belly.
Cheryl, I have never once thought of the fact that increased spasticity means you burn calories more quickly, nor has any doctor ever said that to me. But it totally makes sense. Thank you for that eye-opener. And Carla, coconut milk is brilliant, I am going to start adding that to Max's diet!
ReplyDeleteEddie is a shrimp - 24 months, 22 pounds, 30 inches. It's normal for kids with his genetic condition to be small, so they just have us add as much fat to his diet as we can.
ReplyDeleteWe had the "failure to thrive" too! As a baby my son was way below on weight and off the charts in height with a large head. He literally grew into his head. He has never had a stomach which I think babies need a tummy to learn to sit up on. My son eats from sunup to sundown, he can not be satisfied. When he was a baby I fed him eggs using real cream, anything to add extra calories then we went to a gluten free, dairy free diet, then our diagnosis change so we are just semi gluten free. If anyone's kids dairy free diet try Dari-Free powder it has 70 calories in just 3tsps. Also since I am a country girl I would make my son Chocolate gravey and buttermilk biscuits until his weight started matching his height. Let me know if anyone needs the recipes. My daughter who is a typical kids is very skinny too. I fed her goat milk as a baby until about 4 yrs old. Thank heavens she is healthy so I could stop milking those goats and sell them!!
ReplyDeleteour dev ped said the same thing cheryl said... mobile kids/adults with cp burn way more calories due to oxygenating the muscles and inefficient movements. she said all her mobile cp kids are skinny. it makes sense to me as drake was a butterball until he started crawling, then he leaned down a lot. he works so hard to get around! thankfully drake eats like a horse and i let him and i have been able to keep his weight in the 45 -50%.
ReplyDeleteMiles has been off the charts (as in less than 1% weight) since birth. He is 2.5 yo & has been 22 lbs for the past 6 months. He is g-tube fed but has reflux/vomiting issues & mixed tone. He gets a very high calorie diet so it is more than frustrating !
ReplyDeleteHere are some things we use for calories:
olive oil, coconut oil, coconut milk, walnut oil, avocado, whole milk yogurt, half & half, benecalorie (calorie dense food supplement, scandishake (hi cal shake mix that you add to milk). He has above average fat deposits so his dietician isn't alarmed but overall he is small.. we just really need to get the reflux under control more than anything.
Ellen, before I had my huge gigantic surgery that took 7hrs my gait was so inefficient that I would go out to eat, finish all my food (adult portion) and then start picking off other people's left overs. But you should have seen me try to walk around the mall then. I would be dripping with sweat and panting so hard I couldn't have any kind of conversation. Was time for surgery.
ReplyDeleteI'm in Maryland but my mom took me to Gillette Children's Specialty Healthcare in Minnesota for most of my surgeries (that was the first one there) where they have this super technical super expensive super involved motion analysis lab
http://www.gillettechildrens.org/default.cfm?PID=1.17.1.3
It takes so long to do an assessment (and then for an out of towner like me to analyze pages and pages of data the same day) that they only take 2 patients/day.
They have multiple cameras so that they can film you and the doctor can view you walking both front and side simultaneously on split screen. First the whole you and then the super close up view of just your feet. And if you wear AFOs or anything they have to do a with and without. So sometimes depending where I was post surgery I had to do w/crutches & w/o. A pain.
Then they do the oxygen test thingy I mentioned, where they also (i didn't mention) first have to take your resting output for a few mins and then after make you sit and measure how long it takes for you to get back to baseline. Apparently they can compare that time to how long it would take someone who is nondisabled. Oh yeah, and someone also follows you with a clicker cause they have to compare how many steps you took in that period of time to your oxygen level/how many steps a nondisabled person with legs your exact length would take.
They also do this thing where they take FOREVER hooking you up to all these sensors that are picked up by the 12 infrared cameras mounted all over the walls. From that you get a page full of tiny graphs that show how every one of your major leg muscles move during every step. Compared on the same graph (3 lines) with how a nondisabled person's muscle would move and to the data from the last time you had to go through this whole thing. Cause you want to track change.
They also have "hidden" (you know if you're old enough to understand and they point them out to you or else they're rather camouflaged) scales in the floor to measure how much force is expended with each step. They have to do this once for one leg and then again for the other.
A lot of boring repetitive walking back and forth. It might actually take longer to get hooked up to/unhooked from various things then you spend walking. But you get A LOT of data.
If you're interested enough in the process and don't want to fly, Connecticut children's has the first lab in the country, where my ortho worked before moving on to gillette. Unfortunately most orthos don't have a clue how to use this data. I do though have an ortho in baltimore (also just a few hr drive ?) Who did his residency @ Gillette who is AMAZING! Maybe someone @ Hospital for Special Surgery in NYC knows this stuff? I have a friend who always went to Dr Root.
If I expend 3.5X more energy NOW I can't imagine what it was before...
I also was going to mention before I went off on a very long tangent that my resting heart rate is abnormally high (if you're going to compare me to someone w/o CP that is). It generally ranges in the high 80s to low 90s. If I get on a treadmill at a moderate pace, 2mph or so, and check the heart rate monitor I'm usually in the high 120s. Just walking. I once had a nurse practitioner, who knew nothing about these things, FREAK OUT after she took my pulse.
Well, you see, if your muscles need extra oxygen your heart needs to pump faster to get enough where it needs to go. Because fresh oxygenated blood starts in your heart. So DUH! MY HEART RATE IS HIGH. And so then is my metabolism...
My little boy was chubby as an infant, but has slimmed down. A lot. He is quite an active little boy though :)
ReplyDeleteQueen Teen is also very tiny; at age 14 she's 4'10" and 81 pounds. We've been struggling with weight gain since infancy, adding butter to everything and shoving a snack in her hand every hour. But she remains small. It's who she is. I'm not very big either, so I guess it's genetic, but the fact she has a disability makes it seem so much more important than it may be. She's strong and healthy, so I guess I shouldn't worry so much about how small she is. But recently I noticed a little fat on her butt, which made me so happy! First time ever. Could her metabolism finally be slowing down?
ReplyDeleteWhen my daughter spent 6 weeks in the NICU, the doctors and nurses made us FRANTIC about her weight gain. She could not go home until she gained a certain amount. That helped to make us pretty neurotic about her eating until we met a level-headed nutritionist who set us straight.
ReplyDeleteMy daughter is g-tube fed (mostly). She is only 2. We meet with a nutritionist once a month through Early Intervention. Right now she is 28 lbs 9 oz and 36 5/8 long. She is very long and lanky. Most people cannot believe it when I tell them she is only because she is so tall! We are always working for a balance between weight/height. She usually gains a bit each month and grows a bit (I believe she might just be 6 ft tall by age 5!).
The past 3 months, she has not gained and actually lost a few ounces, so we just increased her calorie intake (mostly formula) so we will see if she starts to gain even more (my back will let me know I am sure).
Forgot to mention - loved the baby picture of max. So adorable!
ReplyDeleteGiselle has already doubled her weight and she isn't even 3 months old!!! Luckily she's super tall so I think she can still be a famous supermodel when she grows up!!!
ReplyDeleteCharlie's physiatrist told me that his tone will make me envious--he burns through calories. He eats the same size breakfast as his father, lunch, and then two dinners, and that's the only way we've been able to put even a little weight on him. Luckily, no one's giving us any grief about it.
ReplyDeleteFor the record, we had a "failure to feed" diagnosis at four weeks, but he now eats completely by mouth! Hooray!
My Sophie has always been very thin and I attribute part of that to metabolism and the enormous amount of energy her seizures take. I think a lot of children with neurological issues are quite thin -- I wonder if the lack of real movement (the bouncing, falling, tumbling, crazy stuff of typical kids) has something to do with their seeming fragility/thinness?
ReplyDeleteMy OT swears CP kids burn faster, that spasticity takes juice. I ran this by my pediatrician and my metabolic docs who all said no, but they also don't deal with CP and related stuff all the time. As I said in the PT post, I am going with the PT on this one and I could sure use some ideas from any of you on how to give calories to a picky eater. Should I stop giving breast milk? I've spent all this time pumping and I hate to waste it, but I guess it just can't do the job anymore. She does eat, just not enough.
ReplyDeleteIsaiah has always been an itty bitty!
ReplyDeleteHe turned 5 last June and weighs in at a whopping 37 pounds, 41 inches. He's well-nourished and proportioned, although he started out borderline "failure to thrive" due to his poor sucking/swallowing at birth.
He eats like a madman now! He has spastic diplegia CP.
A huge issue for both my kids, SUPER skinny (would make you burst into tears to see them naked). Rojo is 13 1/2 and only weighs 72 lbs. A constant battle!
ReplyDeleteMy son lies somewhere in the middle w/his weight and height. I'm hoping he takes after my side of the fam for metabolism as my hubby's side tends to be short and stalky. :) Jenprincess88 at aol dot com
ReplyDeletewhat a cute little chubster he was. As long as he is gaining wait and not just maintaing or losing weight it should be okay
ReplyDeleteMy daughter is just right. I try not to bring my food/weight issues to her but it is hard when you are trying your best to keep the entire family healthy!
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