Thanks to everyone for such a warm welcome to the family! What a fantastic group of people who offer so much support! Kevin commented on the fact that Ellye eats so much. We realize how unbelievably fortunate we are for this and our hearts go out to those of you who struggle on a daily basis to feed your children.
At the first appointment with the geneticist after her diagnosis, the doctor rambled off all of the health issues WHS children face. When she said that something like 90% of children have to eat with a feeding tube at one time or another, I think our jaws dropped down to the floor. Ellye’s Grandmother has always called her “una forchetta”, which literally translates to “a fork”, and I guess she would know seeing as she has raised 3 boys who all tower over 6 feet. However, when Ellye started eating solids, we didn’t realize how much she ate due to the fact that she never gained weight, and we don’t have other children for comparison. Actually, we thought we were either under feeding her or giving her the wrong combinations of food. We also thought, well, maybe she doesn’t drink enough milk. She’s never drunk a lot of milk. And then we went to Florida to stay with my family at Christmas. I remember us watching in awe as Ellye’s near 2 year old cousin ate like 5 blueberries and a morsel of cheese and called it lunch. We were like “What the h…???” How is it possible??? Let me explain just how much she eats on a daily basis to give her her “pig” status. Between lunch and dinner Ellye eats a pound or more of food. And none of it’s fruit. I make a thick soupy dish consisting of hearty vegetables which I prepare, a jar of pureed meat or fish, creamy cereal or pastine (tiny pasta), enough olive oil to dress 3 salads and when she ate dairy, a load of fresh parmegian cheese. That’s both for lunch and dinner. Then for breakfast 150ml of almond milk with granulated cookies and usually a soft-boiled egg mid -morning. For her afternoon snack she eats a pudding or an avocado made into a creamy mixture with milk. We’re hoping to re-introduce dairy so she can go back to snacking on a jar of creamy cheese as well. So my question is, and will always be, WHERE DOES IT ALL GO?? She’s gained very little weight since Christmas so despite all the information available on WHS about slow growth, I can’t understand what happens to all the food that enters our child’s body. I guess genetics is one of those things I will never understand, like complicated math or Italian women who, 3 weeks after bearing a child, walk around impeccably dressed in their pre-pregnancy sized clothes. I guess all we can do is keep shoving it in and wait for the day that it sticks!
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This seems to be an extremely common characteristic among kids with WHS. Even those without feeding tubes who eat well still gain very slowly. Riley has a feeding tube, she got it over a year ago. Initially when she got the tube, she was 10 months and 11 lbs, and quickly gained weight. She is now 26 months and 20 lbs and hasn’t gained much in 5 months, despite an increase in calories. I don’t know what it is that causes this. With Riley, I feel like one of her issues is she is so active, crawls everywhere, walking with a walker, cruising, so she is burning a ton all day long and her caloric needs are just a lot higher than typically developing kids. Her GI doc is not concerned about the number and neither are we. She is healthy and happy and that is what we go by.
I think you make a good point Hannah. As long as they are getting nutrition, it’s usually all good. They will be what they will be. We can try to alter it, but we really don’t have too much control. Haha- love the italian women reference.
My daughter, Kaylee, is 16 months old, and we are currently at the Children’s Hospital of Philadelphia because she had a feeding tube placed. When she was first born, I, too, had read that most children with WHS needed g-tubes. However, I felt very fortunate that Kaylee ate orally and was confident that we would escape needing one. At 9 months, she weighed 10 pounds. At 15 months, she was only 11.5 pounds. That’s a gain of only 1.5 pounds in 6 months. When she decided that she didn’t want to eat by bottle anymore, I knew it was time to reconsider the tube. Developmentally, you are very, very lucky with your daughter. Kaylee is still struggling to maintain strong neck control, and her back is so weak that even sitting up straight is not happening, much less independently…at least, not any time soon. I am praying that putting in the tube will make a world of difference for her developmentally; it makes sense to me that increased calories would mean increased energy and strength. That said, I was already warned that even feeding by tube may not equate to “normal” weight gain. If you have not seen the WHS growth chart, check it out (you can access it on this site). The curve is MUCH less dramatic than the ‘normal’ growth curve. I encourage you to download it, plot Ellye’s weight on that, and I am positive that you will see that she is growing along a very healthy curve and will alleviate any worries you may be having. As Hannah and Kevin said, as long as she is active and healthy, I wouldn’t worry about her weight/growth. From where I sit, you are truly blessed that she is hitting her milestones as she is; many of our children are not quite that lucky. 🙂
I agree with the others! And also wanted to add that in the pics Ellye looks great, she doesn’t look extra skinny or anything, how is her weight to height ratio? I think that number is much more important than just weight alone! 🙂 Emma is fed by tube, but when she first got it, they were trying to catch her up to normal weight for her age and ended up making her overweight, we had to back way down so that her weight was proportionate to her height! Love the pics again, Ellye is adorable and looks fabulous and it sure sounds like she eats a LOT, which is awesome! <3
Hi Deborah,
Ellye looks so healthy! She is perfectly proportionate for her size, she doesn’t look skinny one little bit.
I agree with what everyone else said, and I want to add two things.
First, most of WHS are having low muscle tone. We have a bit of a hard time understanding what that means, especially with our daughter Denise, who is like a little spitfire, she would not stop for a second, she walks, she is just super active. We were told that kids with low tone need to put a lot more effort to make a certain movement, and I assume they need a lot more energy for that too.
Another thing is their ability to digest their food. We started Denise on probiotics couple months ago and initially she started gaining a lot better at the same amount of calories, but than she got sick, so we are unsure how much they help, but I think it’s something worth researching.
Ellye is a beautiful little girl,
Mihaela
Your daughter is beautiful! You should definitely post your recipes or even send me via email!! Sounds yummy!