Ruby has been having trouble gaining weight since she turned a year old.Right now at 14 months she weighs 15 lbs 5 oz. which is in the 25th percentile on the Ds charts.Her pediatrician has been keeping an eye on her weight and I knew that Ruby has been eating o.k. and taking plenty of bottles, so I wasn't too concerned.
That is until I took Ruby to have her heart checked and they decided to compare her weight on a typical children's chart,telling me she was in the 5th percentile, and sent in a dietitian to talk to me about what I feed her.I started feeling a little panicky and then the dietitian called me at home the next day to tell me how to increase the calories in Ruby's formula.She was very nice and only trying to be helpful but when we got off the phone I called my husband and had a good cry.I have always made sure to give Ruby plenty of bottles and I put either rice cereal or oatmeal in each of her bottles.She takes about 8 bottles or more a day and until just the last couple of weeks has taken two or three jars of baby food a day.Now she has decided that she doesn't want the baby food.
I have decided to try the Nutrivene D formula and see if that will help Ruby.I gave literature and the website info to Ruby's doctor and she called me and said she thought that these vitamins would be good for Ruby and saw nothing wrong in my giving them to her.So I ordered the Nutrivene and we started that this week.I'm also adding olive oil to her bottles as the dietitian suggested which is helping to add calories and has also greatly helped Ruby's constipation.
I found this website feeding-underweight-children.com and it said that,"Many children with Down syndrome are underweight when they are young. " This made me feel somewhat better.I plan to start trying to give Ruby food with a little more texture and seasoning to see if that will help her to want to eat more.I found out tonight that she loves to suck on Sour Punch Straws:)Maybe she just needs a little more taste in her food to encourage her to eat. I have read several places that children with Down syndrome like spicy food.
This is a great post by Beth at Hannah's Shenanigans about Targeted Nutritional Intervention.
22 comments:
Saira has always had a weight issue, although she doesn't look like it in most of her pictures, at 14 months she is also approx. about 15 lbs. I have been increasing her calorie intake, avacado is great I believe and have started giving her avacado with banana mid mornings, also make cottage cheese with full fat milk myself at home, and add butter and cream cheese to her food which I cook myself. Saira is eating everything, but naturally cooked separately and specially for her, all still mashed up, but I try and make it as tasty as possible, as I have noticed that she is definately fussy about taste. Have you tried pediasure? I was advised to but still haven't actually tried it. She is having 5 meals a day but doesn't drink any milk separately as she just never took to the taste after she stopped feeding from me, so I have to try and give her as much milk as possible in other forms.
dont beat yourself up over this.... If she has been gaining consistently(even slowly) then she will be ok. Mayson weighed the same at 15 months as well. She is now 3 1/2 and is just finally hitting 24 lbs!!! Some of our kids are just going to be tiny!! hang in there!
I wouldn't worry at all about her weight - it isn't like you don't have experience in raising kids or anything. If she's in the 25th percentile on the DS chart, she's just fine.
I too wouldn't worry. As long as she is consistently growing that is all that matters. So many kid and adults with DS struggle with weight so I feel it's important to introduce healthy fats at an early age...olive oil, coconut oil, avocados, canola oil, grapeseed oil, flax oil, etc. and stay away from the high cholesterol animal fats.
Oh its not your fault. The funny thing is they say DS adults have a hard time keeping their weight down. But everyone I know that has a young DS child, can't keep their weight up. Including us. Jax is 22 lb almost 4 year old. And actually a lot of that weight is fluid. He is actually around 19 lbs without the fluid.
Great advice here already! I just wanted to say that I know how stressful it can be when you are worried about your child's growth. I hope she finds some yummy foods to add to her diet. It sounds like her intake is great!
Wow, I could write a book on this subject with Jonathan...yet no one would purchase it. Jonathan has many issues with weight gain and now at 11 he is only 57 pounds and wears a size 6/7. The good thing is he is healthy, just under weight. Jonathan does have a feeding tube but because of past stomach issues.
We will keep Miss Ruby in our prayes that she find some things she loves to eat and continue to grow properly.
Believe it or not, John Michael went through a growth slow-down from 12 to 15 months as well. It was in part due to his newfound moving/crawling, giving up nursing, and overall less interest in food. It sounds like you're doing all the right things... and crying is OK, too, sometimes :-) I'm interested in hearing your thoughts on Nutrivene when Ruby has been taking it for a while. As for taste... kids w/ Ds can have taste buds affected by low tone and definitely prefer more flavorful foods, according to a Ds talk I went to. My little guy loves Mexican food :-)
I am surprised that they even compared her on a typical chart. Sounds to me like she is doing just fine at 25% on the Ds chart. Just like everyone else said...as long as she is slowly gaining and not losing, she is probably just fine. Ella definitely slowed down in the weight gain once she started moving around more. She has barely gained 2 pounds in the last 6 months.
Seriously... I wouldn't worry about it too much as long as she's eating! Justin is 17 1/2 months and only weighs 18 lbs. He is tiny... and that's just who he's supposed to be!
After Lily's OHS at 4 months, they had a dietician come in to talk to me about her caloric intake. She made me feel so bad! I felt like she was accusing me of withholding food from my child. I had worked SO hard to fatten Miss Lily up prior to her surgery. I think the emotions of the surgery and everything else came crashing down on me. I wasn't very nice to the dietician!! She came back and apologized. I just do the best I can. Lily has grown somewhat every time I take her to the pedi. He's not overly concerned so I'm not either. It's just so hard when you feel like you are being judged when you know you are doing your very best. Hang in there. Personally...I love Lily being the little peanut she is!!
Oh yeah...forgot to mention...Lily too is at 25% on the Ds chart and her pedi said he would only be concerned if she started to drop below the 25% mark.
Looks like you just got a lot of great advice.Convinced not to worry?
I feel for you and I can understand exactly how you're feeling. It sounds like you've got things going the right way -- and when Ruby starts to expand from soft foods, you will see an increase in weight. At least, that was our experience with Gabe...
Some soft foods that are high in calories but still nutritious are avocados, bananas and mangos. Gabe still eats avocados, and sometimes, right out of the skin! LOL!
Smoothies are another great way to get calories into our children. With a thick straw, Ruby may get some extra speech therapy exercise too! ;)
Good luck! And don't beat yourself up over it. As long as Ruby is eating, that is always the best sign!
It's so worrisome when our kids don't gain/grow as well as we expect. I think I even take it a little personally. We also started Goldie on Nutrivene-D last week! Her growth has really slowed down in the last year and her last blood work showed a zinc deficiency. How does she like it so far?
I would say that if Ruby is not LOSING weight, then don't worry. Many children with Ds are in the lower percentile on the growth charts, and so are many children who DON'T have Ds. My oldest daughter was only 17lbs at 15 mos.,tests were done, no problems. She is now 23, has 2 kids, and was recently told by her Dr.that she should eat 3000+ calories a day to maintain her weight because she has a "high metabolism". My youngest boy has Ds,and at 14m weighs 20lbs. All this to say---DON'T WORRY! As long as she is otherwise healthy it should not be a problem! (oh yeah, and I don't have tiny kids, my others were all around 30 lbs at 12 mo.,but started out as 9 pounders)
Oh I feel for you. I have feeding issues with Wysdom His weight is good though but he has always been on a higher cal formula up to 24 cal per ounce instead of the 20 ounce. Maybe you could do that with your bottles. As well Ruth Yaron has a book called Super Baby food that is awesome for increasing cals. I used it for my daughter. I must say that I am impressed with your doctor being supportive with the vitamins. I am trying to get mine to be with Nutra Chem and they want nothing to do with it. Best of luck. I am sure you can do it!! You can also try lots of Avocado and flax oils too.
Thanks for the shout out! I am glad to hear that your doctor is supportive of the supplements--that is so helpful (and rare!).
I agree with what every other mom is saying--she's not losing weight, and she's gaining skills, so there is nothing to worry about.
I like the idea of olive oil, and I think I already mentioned avocado. Flax seed is great too, but of course you have to watch because it goes bad quickly.
Hang in there--she's working on doing lots of things right now!
hang in there! you are doing just fine and so is she. If you were just sitting back and saying oh well it'd be totally different, but you are doing what you can for her. Just give her lots of options and see what she likes. I don't know if it's DS or not, but Marissa loves my spicy chili, maybe you could try that.
Oh I forgot! Coconut oil is great for our kids--it's excellent! It comes as a solid, but it melts easily.
Hello my friend. I understand your situation. Gaby is now starting to gain weight. I found a great recipe for a homemade formula that has essential fatty oils such as Olive oil, coconut oil. sesame oil, Vitamin C, probotics, lactose, and some other wonderful ingredients. The author of the recipe is Sally Fallon of Nuturing Traditions. She's really wonderful. The formula also helped with constipation problems. It truly was a God send. If you want the recipe, just email on my Facebook page, Tony N Jasmine.
If there's no real health reason why she's not gaining weight, try the Pediasure. I haven't used it with Caleb (who has Down syndrome), but I used it with my daughter & it actually helped her keep up with the weight. She wasn't eating enough, hence the weight gain problem. Her pediatrician said I could give her a bottle & a half everyday. You can give it to her by itself or mixed with regular whole milk - it's kinda on the sweet side!
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