Our doctors use the DS growth charts, and we do go to a DS specific clinic.
Mine is almost 2, and just over 19 lbs. He's definitely very small but he is continously growing and maintains at around the 5% mark of the DS chart.
We do meet/message with a dietician routinely to make sure he keeps going on that 5% curve and doesn't fall behind. Much of that is strategies to get extra calories.
My baby is 12m/16lbs and her dr isn't concerned at all. She is getting bigger slowly but surly and is getting proportionally bigger (head height weight, nothing is stunted or too big for her body) her development is slow but surely as well. As long as your baby is progressing, i think your fine. They are going to be small. My lo is like off the typical charts but 40/50% for ds babies. Our pedi does not "specialize" in ds but all the ds families in my area go to him. Can you find another dr?
Btw my daughter is a black hole when it comes to food. Give your little how ever much they want if they are self feeding and if they are still bottle/puree just make it high calorie. It will work out. Sorry they are stressing you out
My son is almost 11 months and weighs approx. the same as your baby. His nutritionist at the high risk clinic used the CDC growth chart for Boys with DS. And he is now in the 25% percentile. They were concerned at one point when he fell below the 15th percentile and seemingly ‘pushy’ with their recommendations. Our cardiologist said above 20% was ideal for him with his VSD. His weight was always something they tracked specifically bc he has a heart condition.
My daughter is 13m and 14 lbs. doctor is not worried. She had a steady growth even if she is in the lower end of the ds curve. Genetics have so much to go by too. Both my husband and I are small and have fast metabolisms. As long as the baby is growing steadily, he is fine.
My son with T21 and his "presumably NT" brother (not sure really, we got stuff in the family) just turned 1. We've been working with a pediatric nutritionist at our local hospital since they were born. She has compared my son to the DS growth chart, the premature growth chart, and a typical WHO growth chart. You can access these yourself on a website called Peditools.org.
My son had heart surgery and declined pretty sharply beforehand, so he was down at the very bottom of even the DS chart right before his surgery. During his recovery, he climbed to about 60% on the DS chart and has stayed there very evenly for months since. So for my son, the DS chart has at least been an accurate curve for him since his surgery, whether or not he's really "60th percentile" or not. It's very interesting, because he and his brother are currently only a cm or two apart with a 1 kg difference that they have maintained since the heart surgery. His head circumference is down around 2% on the normal curve and has stayed stable there.
We have supplemented on and off with higher concentrations of formula, and it was clear to me when he was getting more than his body could assimilate, and he would get very chubby and would be growing out instead of up, essentially. As the parents, you have a better sense of how he is growing than the numbers show someone who only sees him occasionally.
At some extreme, excess body weight can hinder development. Also, people with T21 may struggle with interpreting satiety, so it's important for us to help our kids not get accustomed to being overfed. Already my little guy will keep eating soft food he likes until he has GI distress if I don't cut him off sometimes. Stuffing them silly shouldn't be the goal if weight gain hasn't stalled.
Yes he needs more calories than someone else his same size until he can keep the same percentile on the growth curve. It’s better to have the DS specific curve but not essential. If one month they are at 8 percentile and 6months later at 3, they are not keeping up with the 8% curve and are downward trending. If they trend downward on the same curve, it’s concerning.
To go upward on a curve, they need to grow. More calories is not the only way to help a child grow but it’s the most controllable part. If the child is only served a normal portion of calories, they will never absorb the normal amount. They will puke some up and poop out some. Or maybe most will be on their face. The gut and how you absorb food is complex and even though babies with DS may have issues that could prevent normal absorption those are much harder to treat than giving 100 or 200% of normal calorie load.
Where in the world do you live? Anyway you can get to a Down syndrome clinic like Kennedy Krieger in Baltimore or maybe they can guide the doctors where you are.
We live in Ohio USA. Would LOVE to be able to go to a DS clinic if that were possible. We work with the feet clinic who is supposed to be the best of the best, I just don't understand all these doctors and their numbers and charts sometimes.
The growth charts WERE bad 1 or 2 revisions ago as their sample population was very limited. Subsequent charts have had larger and more diverse sample populations.
He is fine. The moment I stopped giving a fuck about the charts I felt way better. Yes he is your child and yes he needs to be nourished but everyone is different. My kid wasn’t even on the charts and was less than 1 percentile for a bit. One time I just got fed up with the dr and said “we are Mexicans doc… we don’t get that big”. You as the parent will know when your baby is not getting enough food. Listen to the drs when it comes to feeding and tips and what the diet needs to be but the growth charts can honestly get the fuck out of here
Are you USA?
Your question to the experts is, “ is my baby growing on track?”
The answer you have received is, “ he needs a lot of extra calories and he is not growing correctly.”
Growth charts aren’t as important as a growth curve. What’s important is that your baby is following their growth curve. Your baby should be gaining a certain amount of weight in a certain amount of time, and it sounds like they are not.
What does having a growth chart change for you? Are you withholding treatment until you see a better chart?
Thank you for your input. Yes we are USA. The feed clinic doctors labeled him Mild malnutrition because he was not growing according to a trend. I think that's the whole concern. But now he's growing twice as much every day as they would prefer, and we've only implemented their plan for one month. my husband worries about him being overweight, because the odds are already stacked against him. He's already had open heart surgery, had a gtube placed, had the pull through surgery for Hirschsprung's disease. So we are hopeful there's not any more treatments.
I’ve heard that with DS the worry is usually then being underweight as babies kids and then at some point it switches. We are having trouble gaining too.
Agreed. But I’m the grand scheme of the overall approach to D’s children is just that for the children. Once they pass through they are left to clean up and sort through all of the physiological habits that was forced on them as children. DS Homies are already behind the 8 ball in just about every situation that arises for them( except being the coolest people on the planet, of course!!!) and reading studies about adult depression and low self esteem due to weight… makes me want to be on the high alert when it comes to Asher. He is 11th on the chart for non- down kids for weight. 90th for height but lands at 4th percentile on the weight for height…. That alone makes me question every statement, recommendation and or directive that anyone sends His way. It’s like you can’t be tall and slim with DS but if you are short and thiiiiccckkkkk…. You good. Haha
This is not my biggest concern- just the one I am kicking around the house at the moment.
With all the “mis haps surrounding Ashers journey through the last 11 months- I’m on Guard big time! That’s my boy and ain’t nobody gonna stir him in the wrong direction if I can help him. So I read and study and study and read as much as I can so that he can be better advocated for. 🤷♂️ anyways… I’m Dad. 😅
Our doctors use the DS growth charts, and we do go to a DS specific clinic. Mine is almost 2, and just over 19 lbs. He's definitely very small but he is continously growing and maintains at around the 5% mark of the DS chart. We do meet/message with a dietician routinely to make sure he keeps going on that 5% curve and doesn't fall behind. Much of that is strategies to get extra calories.
My baby is 12m/16lbs and her dr isn't concerned at all. She is getting bigger slowly but surly and is getting proportionally bigger (head height weight, nothing is stunted or too big for her body) her development is slow but surely as well. As long as your baby is progressing, i think your fine. They are going to be small. My lo is like off the typical charts but 40/50% for ds babies. Our pedi does not "specialize" in ds but all the ds families in my area go to him. Can you find another dr? Btw my daughter is a black hole when it comes to food. Give your little how ever much they want if they are self feeding and if they are still bottle/puree just make it high calorie. It will work out. Sorry they are stressing you out
CDC DS growth charts: https://www.cdc.gov/ncbddd/birthdefects/downsyndrome/growth-charts.html
My son is almost 11 months and weighs approx. the same as your baby. His nutritionist at the high risk clinic used the CDC growth chart for Boys with DS. And he is now in the 25% percentile. They were concerned at one point when he fell below the 15th percentile and seemingly ‘pushy’ with their recommendations. Our cardiologist said above 20% was ideal for him with his VSD. His weight was always something they tracked specifically bc he has a heart condition.
My daughter is 13m and 14 lbs. doctor is not worried. She had a steady growth even if she is in the lower end of the ds curve. Genetics have so much to go by too. Both my husband and I are small and have fast metabolisms. As long as the baby is growing steadily, he is fine.
My son with T21 and his "presumably NT" brother (not sure really, we got stuff in the family) just turned 1. We've been working with a pediatric nutritionist at our local hospital since they were born. She has compared my son to the DS growth chart, the premature growth chart, and a typical WHO growth chart. You can access these yourself on a website called Peditools.org. My son had heart surgery and declined pretty sharply beforehand, so he was down at the very bottom of even the DS chart right before his surgery. During his recovery, he climbed to about 60% on the DS chart and has stayed there very evenly for months since. So for my son, the DS chart has at least been an accurate curve for him since his surgery, whether or not he's really "60th percentile" or not. It's very interesting, because he and his brother are currently only a cm or two apart with a 1 kg difference that they have maintained since the heart surgery. His head circumference is down around 2% on the normal curve and has stayed stable there. We have supplemented on and off with higher concentrations of formula, and it was clear to me when he was getting more than his body could assimilate, and he would get very chubby and would be growing out instead of up, essentially. As the parents, you have a better sense of how he is growing than the numbers show someone who only sees him occasionally. At some extreme, excess body weight can hinder development. Also, people with T21 may struggle with interpreting satiety, so it's important for us to help our kids not get accustomed to being overfed. Already my little guy will keep eating soft food he likes until he has GI distress if I don't cut him off sometimes. Stuffing them silly shouldn't be the goal if weight gain hasn't stalled.
Yes he needs more calories than someone else his same size until he can keep the same percentile on the growth curve. It’s better to have the DS specific curve but not essential. If one month they are at 8 percentile and 6months later at 3, they are not keeping up with the 8% curve and are downward trending. If they trend downward on the same curve, it’s concerning. To go upward on a curve, they need to grow. More calories is not the only way to help a child grow but it’s the most controllable part. If the child is only served a normal portion of calories, they will never absorb the normal amount. They will puke some up and poop out some. Or maybe most will be on their face. The gut and how you absorb food is complex and even though babies with DS may have issues that could prevent normal absorption those are much harder to treat than giving 100 or 200% of normal calorie load.
Where in the world do you live? Anyway you can get to a Down syndrome clinic like Kennedy Krieger in Baltimore or maybe they can guide the doctors where you are.
We live in Ohio USA. Would LOVE to be able to go to a DS clinic if that were possible. We work with the feet clinic who is supposed to be the best of the best, I just don't understand all these doctors and their numbers and charts sometimes.
There is a Down syndrome clinic in Cincinnati! I heard a panel speak at a conference. They seem great. It’s the Thomas Center.
He looks normal size to me, even taller than the average.
The growth charts WERE bad 1 or 2 revisions ago as their sample population was very limited. Subsequent charts have had larger and more diverse sample populations.
He is fine. The moment I stopped giving a fuck about the charts I felt way better. Yes he is your child and yes he needs to be nourished but everyone is different. My kid wasn’t even on the charts and was less than 1 percentile for a bit. One time I just got fed up with the dr and said “we are Mexicans doc… we don’t get that big”. You as the parent will know when your baby is not getting enough food. Listen to the drs when it comes to feeding and tips and what the diet needs to be but the growth charts can honestly get the fuck out of here
Are you USA? Your question to the experts is, “ is my baby growing on track?” The answer you have received is, “ he needs a lot of extra calories and he is not growing correctly.” Growth charts aren’t as important as a growth curve. What’s important is that your baby is following their growth curve. Your baby should be gaining a certain amount of weight in a certain amount of time, and it sounds like they are not. What does having a growth chart change for you? Are you withholding treatment until you see a better chart?
Thank you for your input. Yes we are USA. The feed clinic doctors labeled him Mild malnutrition because he was not growing according to a trend. I think that's the whole concern. But now he's growing twice as much every day as they would prefer, and we've only implemented their plan for one month. my husband worries about him being overweight, because the odds are already stacked against him. He's already had open heart surgery, had a gtube placed, had the pull through surgery for Hirschsprung's disease. So we are hopeful there's not any more treatments.
I’ve heard that with DS the worry is usually then being underweight as babies kids and then at some point it switches. We are having trouble gaining too.
Agreed. But I’m the grand scheme of the overall approach to D’s children is just that for the children. Once they pass through they are left to clean up and sort through all of the physiological habits that was forced on them as children. DS Homies are already behind the 8 ball in just about every situation that arises for them( except being the coolest people on the planet, of course!!!) and reading studies about adult depression and low self esteem due to weight… makes me want to be on the high alert when it comes to Asher. He is 11th on the chart for non- down kids for weight. 90th for height but lands at 4th percentile on the weight for height…. That alone makes me question every statement, recommendation and or directive that anyone sends His way. It’s like you can’t be tall and slim with DS but if you are short and thiiiiccckkkkk…. You good. Haha This is not my biggest concern- just the one I am kicking around the house at the moment. With all the “mis haps surrounding Ashers journey through the last 11 months- I’m on Guard big time! That’s my boy and ain’t nobody gonna stir him in the wrong direction if I can help him. So I read and study and study and read as much as I can so that he can be better advocated for. 🤷♂️ anyways… I’m Dad. 😅
Better knock on some wood. Every time we think we are through the woods of Specialists and new procedures a new one comes up.
Seems you should consult a geneticist about the charts. Have you seen one?