Helping my 3 1/2 yo slim down

Hello! My husband just found this page and I just signed up. I can’t believe we’ve made it over 3 years and never found this wonderful website. Everyone here sounds amazing!


Our son seems to have a higher level lesion than the most active posters from what I can tell. He needs KAFO’s at the very least, but would do better with either RGO’s or HKAFO’s. We’re on the fence on which is best for him of those 2 high braces, but I just voted for RGO’s because at least then, Lofstrands would be a possibility. So that may give you an idea of his lesion level. I’m not good with the numbers.


He is a little bulky. Not much, but if he were to be slim, like his brother who is this skinny, lanky kid, it would certainly help his ambulation, or at least help his caregivers (Me!) carry him when necessary.

I was wondering if anyone could suggest a diet for him. Since he is a growing child, a typical adult diet doesn’t seem appropriate offhand (such as low/no carb etc).


Could someone steer us in the right direction for how to help him slim down?


  • Hi! We are so glad your family found us!!

    It sounds like you have a great little man on your hands.

    I’m curious, you say he isn’t too bulky. Could you tell us how big he is? Height and weihht? Kids come on lots of sizes. Is it possible that he’s on the verge of a growth spurt (little boys tend to chunk up a bit then) or just naturally bigger that his brother?

    I totally understand about lugging him around. My little.girl with SB is a little younger and a bit more mobile, but still has to be carried a lot. And she is a hefty little girl in her own right. I know how exhausting it can be!

    Maybe with a little more info we can brainstorm on a way to help him be his best.

  • Hi Roni!

    Nice to meet you. I’m so glad you found us too!

    Let me start by saying that I totally agree with you about keeping our children lean, fit and strong. My husband and I have been talking about this since before our daughter was born. We lift weights in our home as a family to keep fit & strong and maintain healthy metabolisms. And we have full intentions of including Pooka in our regime as well. The stronger her innervated muscles, the more they can compensate for the non-innervated ones.

    I’ve been thinking long and hard about your question. I have done every diet under the son. I have a thyroid disorder that causes me to gain wait AFTER birth. And I have 6 kids, so I’ve done a lot of dieting over the years.

    A little over a week ago, my nutritionist put me on a restricted paleo diet after I went to see her for low energy and suspected hormone imbalance.

    I have lost over 3 pounds in 11 days. And what makes that so amazing is that I had been dieting for months before she switched me to the paleo. Most people shed a few pounds when first starting a new diet, but not when switching from a stricter diet to a more liberal diet. I expected to gain weight! I am eating so much FAT! I’m shocked at how fast the fat is melting off my body and I’m eating as much as I want.

    But the reason I would recommend it the most is that by eliminating dairy & grains (which I don’t think are the cause of all ills, by the way), it FORCES you to make more nutrient rich choices. You can’t just grab a baked good or a slice of cheese or yogurt. You have to eat fruits, vegetables & nuts.

    I’m eating better foods than I have EVER eaten in my entire life and I’m shedding weight. You should see the beautiful meals I am eating. I should start a blog just to take pictures of my colorful delicious meals. I think this is the healthiest diet one could do. If you just cut out dairy, grains & refined sugars, your little guy would probably lean up in no time and get healthier too!

    If this is too extreme (it’s not easy, I’ll tell you that), just say so, and we will brainstorm some more with you.


  • Thanks for your replies! Re his height and weight, I thought I kept them from his last checkup, but can’t find them. I’m not sure… He does take after his grandfather though, who is a tall broad shouldered man. We say AT is ‘built like a tank.’ The walker helps with that personage. He has been consistent with having a little tummy throughout his life.

    So I admit that it’s not necessarily that he’s overweight by normal standards – only that because of his particular situation, it’s especially important, and that if, unfortunately, he is not naturally inclined to be skinny, we ought to force the issue a little. This is also why I want to make sure AT is getting everything a growing boy needs.

    It’s funny you should mention the Paleo diet. Recently, a friend lent me 2 books on the subject, which have been getting dusty. Tonight, thanks to your post, I will see what it’s about. I don’t know the first thing…

    Paleo aside, do you think I should I be counting calories? Carbs? Grams of something?

    (PS I LOVE the name Pooka.)

  • I wouldn’t “count” anything. I would just limit his choices (in favor of healthy ones).

    What books did she lend you?

    Paleo is basically no dairy, no grains, no refined sugars. There are other “minor’ rules, but those are the “major” ones.

    Ha, Pooka is her nickname. I don’t think I’ve ever told the story on here. Pioneer Woman (Food Network star & cookbook author) calls her dog “Pookie Sunshine”. And that was too cute and rubbed off on my teenage daughter and I. We started calling anything cute “a pookie”. So while I was pregnant we called the baby Pookie. But once she was born, it somehow transitioned into “Pooka”. And there you have it. πŸ™‚

  • Tspar – I LOVE PIoneer Woman. I swear you and I are related…

    Roni, I don’t think you can go wrong with being careful about only offering (or very mostly offering) healthy, nutrient dense foods. But I certainly wouldn’t worry about tracking every mouthful. That just isn’t warranted in a young child, particularly in one who really isn’t overweight. Also, I would be concerned that it would lead to potential anxieties on his part, about eating, or to a very rebellious attitude later. There would be no way to be that particular about his food without him picking up on it.

    In my personal experience both of my boys were slim when they were born, became little Michelin men thereafter UNTIL they were able to be very active, and subsequently stayed pretty slim until puberty, when they bulked up again some in preparation for that last big growth spurt. My son, also 3, even now, gets a little chubby, especially in the face and waist, just before he has a growth spurt. Which is to say, I’m curious how much activity AT gets? I know you said he uses his walker, which is awesome. But the walker can be cumbersome and tiring for some. Maybe not AT, but I’m wondering what other ways does he get around to play and be physical. Along with other changes maybe there are things you can do to encourage him to be more active. Not in a PT sort of way, because sooner or later everyone is sick of that, but in a childhood is just fun kind of way. Does he crawl? Use a scooter board? Have some other clever way of getting around? How can you get him to chase you or a ball, or the cat or whatever? What does he do when you take him outside? What does he love that you could turn into a more physical game?

    I know you are concerned that he won’t get sufficient exercise because of limited walking abilities, but there are plenty of wheelers who are paraolympians and such like. There is no reason that limited ambulation has to equal limited mobility or physical health. Now would be a great time to look around and see if there is Miracle League baseball, or other modified sports leagues near you. Basketball is very popular because it can be so easily adapted to anyone. I’m not saying he will need wheels, just that there is no reason not to find ways for him to be active on a normal, 3 year old level. Lots of things can be modified, including our ideas about how things can be done. Don’t think of him as limited and don’t let him think of himself that way.

    Last of all you mentioned him having a little tummy. This may not be it at all, but it makes me wonder how his bowels are. Slow bowels, frequent constipation and the like, can give anyone a little pooch of a tummy. Correcting that, if it is an issue, wouldn’t do much for his weight, but it would do tons for his health.

    I can’t wait to hear more about your guy. Feel free to put his beautiful face up in our photos. We’d all love to see him!

  • πŸ™‚

    The books she lent me are: Practical Paleo and The Paleo Approach. Thank you for the cliff’s notes version TSpar, I don’t know when I’ll get to reading them!

    I can’t do “mostly” of a type of diet. I have to do all or nothing, otherwise it’ll spiral out of control between myself and the interesting personalities and food preferences in this house!

    I actually looked into Miracle League, it’s way too far out from where we are. I heard there’s adaptive rock climbing locally, and adaptive swim somewhere, so those are (among) my next projects. (Although I really wanted to prioritize music lessons.)

    Regarding movement, that’s the thing. He is out of his braces at home often and he crawls everywhere. Fast. Up stairs, down stairs. He does flips (TERRIFYING FLIPS @_@), he ‘dances,’ he’s all over the place, so I would have hoped he would be thinner.

    Re constipation, he has been on an enema protocol for about a year… I don’t feel like there have been any problems with that… Is it possible he could be constipated even on a protocol?

    I plan to post a photo soon, I’ve been using a new chrome book style laptop which doesn’t have any of our photos on it…

    Thanks again, I think the next step is just getting the Paleo diet into my brains, and our fridge… I myself must improve the way I eat or I can’t expect my kids to, right?

  • OK, you girls are speaking my language now. I LOVE-Love-love talking about food and recipes!

    MrsK – what are you favorite PW recipes?

    Roni – There are SO MANY Paleo books on the market. And I own only TWO, the SAME two you were loaned. How funny is that?

    Paleo Approach – I’ve owned it for over a year, looked through it multiple times, never been inspired, never cooked a single recipe. I mean who wants to eat offal? Its awful! πŸ™‚

    Practical Paleo – I looked through it in my nutritionists office and started ooohing and aaahing and planning my menus before I ever left her office. I’ve owned it for 12 days and have made 8 recipes. And it doesn’t disappoint. I didn’t even read through any of the philosophy of the book. I just cut straight to the recipes! πŸ™‚

    So if you decide this is the way you want to go, just let me know if I can help.

    AT sounds so cute and fun! I wonder if adaptive swimming / aquatherapy might accomplish two goals with one sport – slim down and gain movement/skill/confidence?

  • Pioneer Woman – Spicy Beef and Grits and her corn chowder. Hands down favs.

    If you guys are on track.with your bowel routine and working for you, then no, I wouldn’t think he was still constipated. That was just a stab in the dark on my part.

    It really sounds as if you are doing all the right things. Maybe he will grow into his size like a puppy grows into his feet. πŸ˜‰ But, it sounds like he’s healthy and thriving and I’d encourage you to be satisfied with that. As long as he is happy and active, I don’t think you have much to worry about. I would be more concerned about being too focused on this one issue and either missing out on some real fun or having that concern transfer to him in a way that is unhealthy.

    Remember he’s only 3. There are LOTS of changes to come. Give him some time, encourage good habits and see where it goes.

  • MrsK – I’m so glad I asked. I haven’t made either of those recipes. Sounds scrumptious. I’m going to look them up, for sure. I love grits. But Not Paleo Legal! πŸ™

    Roni – I agree with MrsK about not being too hung up on his weight unless he becomes overweight. But I would encourage you to still try to improve your family’s eating habits. Because his body knows what it needs. And if he is eating better foods, but still plenty of calories, his body will shed the weight if it needs to. But if he is getting ready for a health spurt and needs that extra weight, then his body will hold on to it. Paleo isn’t intended for weight loss. It’s intended for health. Even if you don’t do paleo, just cutting out all refined foods and replacing them with nutrient rich ones would be a great step in training him to eat healthy for life.

    I’ve been thinking about this since I saw MrsK’s response this morning. I think this issue of staying lean requires a very conscious balance. On the one hand you don’t want the child to always feel like they are dieting or be overly conscious about their weight. But on the other hand, keeping them lean is so important for future mobility. So I think the best balance is to just set good patterns as a family – eat healthy & be active! And that’s all he will ever have known.

    I was recently reunited with an old friend. We had not seen each other in over 5 years. In getting back in touch I learned that she has a niece with Spina Bifida. In chatting, she was telling me that the mother always complained to her about the work associated with her daughter’s Spina Bifida. She remembers clearly when the mother gave up on bracing (because it was inconvenient) and bought her daughter a wheelchair. This is all second hand, of course, but after more inquiries it seemed the daughter was somewhat high functioning. The niece is an adult now.

    So my face lit up and I said, “It’s not too late. There is so much she can do! There’s weight training and Anat Baniel and so many great bracing options – carbon fiber……”

    And then she said, “But she’s 300 pounds!”

    And my face dropped. And the conversation pretty much ended there.

    And unfortunately I see this so much in the Spina Bifida community.

    So I’m all for creating a healthy lifestyle pattern, without creating a weight complex.

  • P.S. I need a video of these TERRIFYING flips! πŸ™‚

    P.S.S. You said, “I can’t do β€œmostly” of a type of diet. I have to do all or nothing, otherwise it’ll spiral out of control between myself and the interesting personalities and food preferences in this house!”

    How many in your family? There are 8 of us!

  • I just got an email from Paleo Magazine. Their editor put together a list of the top 215 Paleo Blogger recipes organized by category. It’s super user-friendly and easy to navigate. The recipes look scrumptious.

    Even if you don’t have time to do a full Paleo 101 course right now, you could try just incorporating some of their recipes into your weekly meal plan.

    And if you make anything and love it, please let me know! πŸ™‚

  • Ok, so you all inspired me today and I just made a recipe from Pioneer Woman for supper. πŸ™‚ TSpar, I know you told me about her forever ago but I am actually feeling more inspired to cook lately. I made chickpea curry and it tastes really good! C can’t have chickpeas or rice but I have left overs from yesterday for the kids anyway. πŸ™‚

    • Yea! I’m so glad! You still need to make your husband that bouillabaisse recipe I sent you. Fast and Yum!

      I haven’t seen this chickpea curry recipe either. How have I missed these yummy sounding recipes? I always make PW’s grits that go with her pork tenderloin. I wonder if it differs much for the spicy beef recipe. I’m going to go look them up right now. I love curry, by the way – yellow, red, green. Yum!

    • These recipes are NOT in her three cookbooks (with the exception of the corn chowder). No wonder I haven’t seen them. I’m going to look online now.

    • Oh my gosh, Yum. I want spicy beef over cheesy grits right now!

      Sorry for all the foodie comments today. I told you ladies that you were speakin’ my language.

  • Thanks for the replies – I went straight to the recipes in Practical Paleo. A lot of them do look good. As I was going through the day today of feeding everyone, I was trying to imagine going Paleo with it all and nearly had a nervous breakdown. No toast for breakfast. What about the wrap AT brings to camp. Then the rice with dinner. I need 30 second prep foods!!! And store bought sauces and every shortcut! But I will go to the website and try to come up with ideas. It’s a big change.

    But for the record, I do try to use whole grains and healthy and natural sugar substitutes when I’m cooking. The brands I buy are usual organic, gluten free types. And organic fruits, lots of nut options, etc… But I will for sure have white flour and processed snacks around too, so my goal will be to try to phase that out, and shift to a more paleo friendly diet for everyone.

    There are 6 of us from 9 months to 7. (and 2 grown ups)

    That was a sad but poignant story about your friend’s neice. We hope our son will have a healthy attitude towards balancing the health benefits of walking with the convenience (when it IS convenient) of being in a wheel chairing.

    I am not harping on this or stressing it too much, although since it’s the topic of this post, I see how it could seem that way. I just felt it’s something I should look into for him, so I figured it would make a good first post for us. I have another post coming πŸ˜‰

  • Oh goodness! I don’t think you are harping! Its a concern. I just know me. And I know how a little idea like that will slowly, insidiously worm its way into something bigger. And I have seen the damage food-obssessed parents (of any kind – too much- too little) can cause, even when they had only the very best intentions. So, I am personally always evaluating myself.

    It IS a big change, especially when you are feeding so many. I’ve been reading a book called Well Fed – Paleo for People Who Love to Eat. She has a methodology in it for running your kitchen and cooking in such a way that you put in a couple hours up front, and then daily meals throughout the week go MUCH faster. It might be worth a look, even if you had to adapt it partially to your particular circumstances. And, for the record, I dont’ eat Paleo just now, I was just reading out of curiosity and thought it was very practical.

    And, I agree with Tspar! We need to see those flips!!

  • LOL what a nice reply, it’s like something I would write. Well Fed sounds like a good resource.

    Eventually I will get on it and update here…. hopefully…

    I’m not encouraging the flips due to the terror component O_O but I did finally post pics in the gallery.

  • I agree, MrsK has such a way with words! I tend to be way too blunt and then read something later and blush. I’ve tried to learn from her gracious, encouraging ways. She wrote the front page of this site, probably the best written portion of the whole site.

    I felt sad when I read your post last night. No nervous breakdowns allowed! It’s supposed to be fun and delicious and healthy. Rather than focus on taking things away, just focus on adding things for awhile. Make small goals according to your own needs and desires and start adding in more healthy foods. Look through your cookbooks and/or online sites and add some new recipes that you get really excited about, things that get your mouth watering, things you know your family will love! And maybe just spend your first month ADDING things. Don’t take anything away.

    Then next month maybe consider taking away something that you consider a bad food or a food that cannot be eaten in moderation, or as the “French Women Don’t Get Fat” author says, one of your “petit demons” (said with a thick French accent). She talks about identifying your weaknesses, foods that make you lose control. Rice is that food for my husband. And white tortillas are that food for me. Oh and nutella! Ha!

    And if you need help with ideas, feel free to post here. I’m still working through the process myself. My oldest daughter & I are the only ones doing Paleo, by the way. She has autoimmune issues. But I am still trying to improve everyone’s diets, especially their snacks. Just this week, I limited the snack list to:

    -Kale Chips
    -Blueberries w/Coconut Cream
    -Apples w/Peanut Butter & Maple Syrup (I made up a whole batch in a peanut butter jar so they can serve themselves)
    -Hard Boiled Eggs (by the way I just learned how to hard boil fresh organic eggs so the peel slips right off, wish I’d known this 10 years ago)

    Any other ideas are very welcome!

    Oh and MrsK – that book looks amazing. I ordered it! I’m so excited. I’m really enjoying this process. This morning I made the sausage w/apples recipe from the link I posted yesterday. They were delicious. I served them over kale that I added to the pan to soak up all the spatter. Delish!

  • Roni, AT is adorable and he looks strong and healthy, but not overweight at all. But having said that, I still understand that a more lanky frame would make mobility easier for him. But God gave him his own frame. I have three young boys very similar in age, 2 of them are lanky and 1 of them is stocky. That’s just the way God made them.

    Like MrsK said, kids go back and forth in weight while they are growing. He doesn’t look like he has a problem at all. But let’s say he does get heavier than you think is healthy, you can always go more extreme then. But if you make the positive changes now (adding good foods), it will make the negative changes (removing foods) easier later.

    Just my two cents. He looks perfect to me! And I still think swimming & aqua therapy would be good in every way as well!

    P.S. Where do you live?

    P.S.S. I’m so glad you are here and am looking forward to your next post!

  • Roni – welcome to SBN! We are so glad to have you here. I apologize for my extremely late attendance to this wonderful post and conversation about nutrition. So many great ideas and definitely inspiring!

    I will add my two cents here. Which likely is only worth about one cent πŸ™‚

    First, my fine print disclaimer. I am not perfect with nutrition. I have a clinical addiction to coffee and could easily eat my weight in jelly beans if given the opportunity. I should exercise more. I hate dieting and have never been successful with it. Likely because I hate it. Also likely because I question everything in life. In fact, my favorite question is “Why?”!! So I end up questioning all types of dieting which leads me down the path of diet failure. So I don’t diet. Ever. Also to note, I am almost completely vegetarian. I will eat fish a couple times a year and could never give up sushi completely. My veg comes mostly from flavor preferences and that my body just feels better without meat, some from the global impact of typical food animal production, and a bit from an animal welfare standpoint. However, my household is not strictly veg at all. My husband and children eat all types of meat on occasion and would love to have it more…but I do most of the shopping πŸ™‚

    My approach to nutrition is very, very basic.

    1) Eat real food, everything in moderation, mostly vegetables.. If it is not something your great grandmother would recognize as food, then don’t eat it. So, fresh fruit/veggies, lean meats, whole grains = real food. Chicken McNuggets, Cheetos, Twinkies, and jellybeans (eek!!) = not real food.

    2) Snacking – If you are hungry enough for (insert food here that you or your child is requesting that might not be a “good” choice), then you are hungry enough for an apple (or carrot stick, sliced cucumber, cherry tomato, etc). This means that whenever I reach for the granola bar, I first ask myself if I am hungry enough for an apple. If I am, I eat the apple first. If I am still hungry, then I eat the granola bar. Usually, an apple will do it and I find that I am not hungry after that. Same goes with my kids. I have them eat whatever healthy thing I offer first, then they usually lose interest in whatever no-so-healthy thing that they thought they wanted. This is my way to prevent mindless boredom snacking.

    3) Drink water. I am terrible at this. Unless, of course, the water tastes like hot coffee, then I can drink gallons. So, I have an app on my phone that reminds me to drink water. My kids know the sound and we literally all grab water when we hear it. My kids are better about water consumption than I am, so hopefully creating better habits with them. I find that when I do keep up with my water consumption, I feel better and snack less.

    Some of my favorite food books are The Omnivores Dilemma and In Defense of Food, both by Michael Pollan.

    Really basic stuff, no rocket science here. Just a few simple things that keep me on track.

  • Tracy! You have a phone app that reminds you to drink water?!

    I MUST know what its called. I stink at that too!!!

  • Thank you Tracy!

    I second MrsK’s request. πŸ™‚

    There’s such a good selection of sound advice and eating tips on this thread.

    (PS Thank you TSpar for your compliments)

  • Drink Water Reminder – Drinking water for healthy living by Aplicativos Legais

  • I also love the Yummly app. Totally customizable….Veg, paleo, I hate/love certain ingredients, etc.
    Yummly Recipes & Grocery Shopping List by Yummly

  • Hey Roni,

    There is a gal over on Baby Center – Spina Bifida Kids asking questions about RGOs. And shockingly, it appears that none of the active members have kids using RGOs. There are 1500 members (not all active, of course) and she hasn’t gotten any responses to her questions. Any chance you would want to weigh in? Or tell me what you think of them? Why you chose them, etc? Her post is here:

    She asked:
    “RGOs – Anyone have advice on this type of bracing ? We just got this today and I’m curious with your expierence?”

    No pressure. I just thought of you when I noticed that she hadn’t gotten any responses.


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