UPDATE: Arie's eating nightmare continues.
Well, yesterday we went to another feeding clinic visit. At (almost) 14 months old, Arie weighs 17lb 7oz. I cried. I was SURE he had gained more weight than that. He only gained 1 lb in 3 months. He will NEVER face forward in a car seat at this rate! He did grow about 3 cm in length though, so that's good. That's pretty much the only thing saving him from a feeding tube at this point.
Apparently though, he is taking in enough calories but still not gaining weight, so it's sort of a puzzle. We had blood work drawn, but naturally, somehow the results got lost. Children's Hospital can't find the results and the lab said they have "no record" of it. ARGH! The lab work is to check for metabolic abnormalities. They are also going to test him for Celiac Disease (a severe gluten sensitivity?). He has a few of the symptoms including failure to thrive and chronic diahrrea.
So, they came up with this whole new plan. They switched his formula from soy to Alimentum, which is super expensive, and they have decided to eliminate all dairy and soy from his diet to see if he has a dairy or soy intolerance (not allergy). Here is my problem with this... the ONLY fattening things he eats are yogurt, cheese, and butter! I have no idea how to pack on calories now. But, whatever. We are still concentrating his bottles (3 scoops of formula to 5 oz water). We also add powdered fat (called Duocal... also super expensive) to his bottles. In addition to that, we add a scoop of Alementum and a scoop of Duocal to every 4 oz. jar of food he eats.
They also want me to reward every bite he takes by turning the tv. on and off. For example, if he takes a bite the tv goes on... stays on for a few seconds (as a reware) and then gets turned off. If he takes another bit it gets turned back on again. Well, I just don't know how I'm going to do that! I have two other kids (2 and 5 y.o.) who are both HIGH maintenance during meals.
I'm getting so frustrated. He really is eating much better now and we've been working SO hard at it. I'm frustrated that he's "taking in enough calories" but still not gaining weight. I also feel like the feeding clinic is still focusing on getting him to eat and not looking hard enough for a medical cause. Granted his eating isn't great but it's better.
FYI- he drinks abotu 12oz formula per day, and eats about 12-16oz food per day. And he's 14 months old (I know I already said that, but felt the need to restate it!)
Anyway, I will keep you all updated. I just want an answer at this point... something to guide us, you know?
Thanks for listining!
Apparently though, he is taking in enough calories but still not gaining weight, so it's sort of a puzzle. We had blood work drawn, but naturally, somehow the results got lost. Children's Hospital can't find the results and the lab said they have "no record" of it. ARGH! The lab work is to check for metabolic abnormalities. They are also going to test him for Celiac Disease (a severe gluten sensitivity?). He has a few of the symptoms including failure to thrive and chronic diahrrea.
So, they came up with this whole new plan. They switched his formula from soy to Alimentum, which is super expensive, and they have decided to eliminate all dairy and soy from his diet to see if he has a dairy or soy intolerance (not allergy). Here is my problem with this... the ONLY fattening things he eats are yogurt, cheese, and butter! I have no idea how to pack on calories now. But, whatever. We are still concentrating his bottles (3 scoops of formula to 5 oz water). We also add powdered fat (called Duocal... also super expensive) to his bottles. In addition to that, we add a scoop of Alementum and a scoop of Duocal to every 4 oz. jar of food he eats.
They also want me to reward every bite he takes by turning the tv. on and off. For example, if he takes a bite the tv goes on... stays on for a few seconds (as a reware) and then gets turned off. If he takes another bit it gets turned back on again. Well, I just don't know how I'm going to do that! I have two other kids (2 and 5 y.o.) who are both HIGH maintenance during meals.
I'm getting so frustrated. He really is eating much better now and we've been working SO hard at it. I'm frustrated that he's "taking in enough calories" but still not gaining weight. I also feel like the feeding clinic is still focusing on getting him to eat and not looking hard enough for a medical cause. Granted his eating isn't great but it's better.
FYI- he drinks abotu 12oz formula per day, and eats about 12-16oz food per day. And he's 14 months old (I know I already said that, but felt the need to restate it!)
Anyway, I will keep you all updated. I just want an answer at this point... something to guide us, you know?
Thanks for listining!
posted by Ryan | 6/23/2007 04:13:00 PM
8 Comments:
I'm so sorry you are having such a rough time with all of this. I don't blame you for wanting answers. If you know what your dealing with it makes it easier to deal.
Thinking of you and hoping you get the answers you need very soon.
I know how disappointed you must feel. I know that no parent wants to find out that their child has a disease but maybe if you find out he does have Celiac disease some of your questions can be answered! And then you will know for sure what you need to do! I saw something on Discovery a while ago about a little girl with Celiac disease and she could still eat a lot of stuff! They make a lot of gluten free stuff now. I hope they figure it out soon! And that they don't lose his results again!!!
Hi, Ryan, I haven't been blogging for awhile and am sad to hear that the eating saga is continuing for you all. I hope the doctors turn their sights to a cause rather then a treatment for the symptoms.
Hang in there. I hope that you and your family are otherwise doing well! Happy Fourth!
I may not have the whole info but why are they doing so many tests. If he is eating but just not gaining whats the issue? He is of asian descent and they tend to be smaller frame. I am adopting a 3yo from China who is aboutthe same size as my 2 yo grandson, petite. My 2nd daughter was a small baby she only weighed 18 lbs when she was a year old abd no one said anything about it , my 1st daughter was a porker she weighed 18 lbs at 6 mos, only a year apart. my #2 DD is still tiny 5'1" and 101 lbs she is 21 yo.
My boys are both small my 13 yo just weighs 65 lbs and has no body fat my 14 yo tips the scales at 82 now. DS#1 has crohns disease and was diagnosed when he was 7, same symptom as celiac's,he was tested for that also.
as a mom go with your gut and heart.. take some time and see if things will adjust. he hasn't been home that long . good luck Bonnie
www.bringingzoehome.blogspot.com
I was just thinking of you and wondering how things were going? I hope all is well and the eating issues are getting some better.
I'm a bit late (It's August, afterall!) but I just wanted to give you a hug and a "Hang in there"! My bio son was 17 1/2 lbs at 20 months (we had to have him weighed twice a month) and it's so hard when they're not gaining. M didn't end up having celiac or an allergy, but we went through every possible test, including CF and it's difficult and frustrating. The formulas didn't work, the DuoCal didn't work. They put him on a 10 day course of Flagyl (this child's weight dropped off at 4 months and height at 6 months, flatlined on the charts) and it seemed to stem the tide, although we never did find out what it was. I have had him to two gastroenterologists and even switched pediatricians. He's currently a 33 lb 6 1/2 year old, and otherwise healthy, but still teeny.
No advice, but just wanted to encourage you today!
i think of Arie often and I hope that his gaining weight is better, as your post is old and i am a late responder. prayers. and DO update.
Swinging by again to say hi and hope things are improving with Arie's eating. Best!
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