Special Needs

When is weight gain a concern (or lack therof?)

I know at DS1's rheumatology appointment when he was 14 months old he was 24 lbs 3 oz in a clean diaper.

At the dr's last weekend (he's 31 months) fully dressed (in jeans, t-shirt, and sweatshirt) and wearing shoes he was 26 lbs 3 oz.

The doctor's don't seem concerned (he looks really skinny in some places, you can count all his ribs and he has no toddler belly) because he has such high tone that he doesn't look "skinny" because of muscle mass.  Also, they see how delayed he his and how bad his tone is and presume he's just not a great eater.

However, he eats A LOT!!!

Breakfast: huge bowl of cereal and a banana, or 2 scrambled eggs with cheese and a greek yogurt

Snack: handful of crackers, or goldfish, etc

Lunch:  Peanut Butter Sandwich or Grilled Cheese (sometimes 2 sandwiches) and fruit

Snack:  fruit loops, etc

Dinner:  An entire container of velveeta mac and cheese or the frozen ones, jarred baby food for fruits or veggies and then he usually has some of my dinner too if he is physically able to.

Dessert:  He'll usually share something with grandpa, donuts or danish etc.  

He also drinks between 16-24oz of whole milk and 8-12oz of Pediasure a day.

Sometimes he gets fast food because of appointments, he'll eat the entire McDonalds Sausage Egg and Cheese McGriddles, a whole double cheeseburger, etc.

I feel like he eats enough for a grown adult and yet can barely gain weight.  Is this a concern? 

To my boys:  I will love you for you Not for what you have done or what you will become I will love you for you I will give you the love The love that you never knew

Re: When is weight gain a concern (or lack therof?)

  • I know the weight gain does slow down, significantly as they get older.  Have they told you what percentage that would make him?  You can use the online calculators too.  M is 22 months and around 21lbs, we saw GI and they did an endoscopy and ruled out any GI related issue to cause her being so small.  She is insanely tiny/skinny, especially compared to P.  I know 6-9 month olds bigger than her, and she still wears size 12 month clothes.

    I always say follow your gut, if you think something is up, it never hurts to ask and maybe run some basic labs (thyroid?) i'm not sure what could be affecting it . We kept M on forumla until almost 17 months old to help her try to gain more weight and we were told to add butter/not so great for you stuff/to anything she would eat it on.  The more calories the better.  She eats wayyy more than P does but it just doens't stick.  For the time being, it's off my radar for issue, we go back in Feb for 2 year well visit. 

    DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned

    DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3


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  • Dayam! That is A LOT of food! I thought Nate could pack it away, but your DS has him beat.

    Is he indicating he is hungry for all of that or is the amount because of your concern about weight gain? Have you tried cutting the portions but keeping the frequency? Is the act of chewing/eating a sensory need instead of a hunger need?

    I have a script from Nate's Dev pedi for a thyroid blood check that I am planning on doing soon. We are sort of assuming that Nate burns through calories faster than a normal person because he is working so hard to move? I don't know....Now that I type that out it seems kinda wacked. We were going to go to an Endo because of how much he eats Vs his size. Right now that is on hold. Whatever floats to the top is our policy for seeking specialists. Endo is not quite bouyant yet.

    I would be concerned with that amount of food. If he is zooming through that much food, I would worry that his body is acting more like a food mill and not really benefitting in a nutrient kinda way. Forget the gaining of weight and fat. Is he pooping like 3 times a day or something? Perhaps he has an absorption problem?

    Sorry, lots of questions. I am truly AMAZED at what your DS can pack away.

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  • That is a LOT of food! Might be worth a thyroid check to see if anything is going on.After a year of weight checks and slow growth, my DD was only 21 lbs at her 2 year old checkup. By that point, without any actual testing, the pedis decided that she was just small, because I reported that she eats well. Realistic's comment on her DD2 has me wondering now though.
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  • My son eats a ton (his breakfast consists of a large sized bakery bagel, then asks for a bowl of cereal an hour later some days!) and also has slowly gained weight. We actually thought he had lost weight between appointments (he weighed 26lbs at his GI doctor's office, then only 24.5 on the pedi's scale another month and a half later). My pedi chalked it up to variances in the scales.

    My son outgrew the typical "toddler belly" at 1 and you could always count his ribs. Me and his dad are both tall and thin so the pedi chalks it up to genetics but said if he ever lost weight/dipped dramatically from his growth chart we'd explore it. He also has SPD so his energy levels are super high--he burns it off during the day.

    If his activity levels are low, I might explore his thyroid getting checked. If he's really active, still gaining and his pedi isn't worried I wouldnt be either.

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    I would be concerned with that amount of food. If he is zooming through that much food, I would worry that his body is acting more like a food mill and not really benefitting in a nutrient kinda way. Forget the gaining of weight and fat. Is he pooping like 3 times a day or something? Perhaps he has an absorption problem?

     

    this is what I would be concerned about as well. If he's pooping a ton then it definitely could be an issue with absorption. DS 1 drinks 60+ oz of Rx formula per day & also eats quite a bit. We found out last February hat he has Severe Exocrine Pancreatic Insufficiency & wasn't able to process fats, proteins & carbs. He's now on pancreatic enzymes with every meal & it's made a huge difference!  

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  • i know that some doctors have the opinion that as long as a child is staying around the same percentile for height, it's okay if they're not gaining much weight. is he staying at the same percentile for height?
  • That is a massive amount of food. I think it's worth having them look for absorption issues and/or thyroid issues.

    However, while I know he doesn't have CP, it might still be relevant since he's so hypertonic. I've frequently heard kids with CP who are very hypertonic can have a lot of trouble gaining weight (even on g-tubes) and are often very very slim because their body has to work so hard to fight the tone. Basically his body is always in a state of activity, it's never relaxed so he's just burning more and it will take more to fuel him. That doesn't explain why he was able to gain so quickly at first, but may help explain the significant decrease in weight gain since didn't he become a lot more mobile once he had botox?

  • My youngest was failure to thrive. But I am not an expert. What they gi and his pedi were concerned about was he was not following his curve for both weight and height and would eat massive amounts of full fat foods. Absorbtion issues, would usually impact their bowel movements too... think color and smell factor. My son has a high metabolism... so he would eat, eat, eat and not grow. We had him on a high fat diet and a appetite stimulant to trick his body into thinking he was still hungry. I have skinny kids... that is how we make em.. so weight was not a factor for us. Height though was a concern. Thank goodness, with this diet he started back on his little curve... but he is following it. Some paths do have dips, and that can be okay... but if you are concerned def mention it and take a look at his growth curve with the pedi.
    Boy 1 2/06 - Boy 2 12/07 - Boy 3 9/09
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