I first became concerned with Lilly when she was around 9
months old. She was not gaining weight and was dropping down percentiles
(greatly) on the child height and weight chart. I kept mentioning my concerns
to our pediatrician and was being told that if Lilly dropped another 10% they
would look into it. She went from 50% to 10% in about 1 year and our
pediatrician still wasn’t addressing the issue.
Then when Lilly turned 2 she started having some digestive issues. The issues were causing extreme bloating, cramping, and constipation. She was having these ‘episodes’ about every 2 weeks. It was extremely difficult to see her in so much pain and not knowing what to do about it.
Around this time her eating habits also became very poor. I couldn’t get her to eat more than two bits of each meal. There were a couple of instances when she wouldn’t eat anything for a week straight and when I would call the pediatrician they would push me off and tell me it is normal toddler eating behavior. It was frustrating for me because I knew it wasn’t normal and trying to force Lilly to eat was causing a lot of bad feelings during meal times.
After a long discussion with Tyson and knowing that this year we would hit our deductable we decided it was time to take Lilly to a specialist. We were referred to a GI specialist that is based out of Iowa City and visited our area every other Friday. (A GI specialist is a doctor who specializes in diseases of the gastrointestinal tract.) The office is usually scheduled 3 months in advanced; however, we were able to get an appointment for the same week due to a cancelation. I feel like getting that early appointment was a big blessing for us.
When we went to the appointment they took Lilly’s weight and immediately labeled her has failure to thrive. Children are diagnosed with failure to thrive when their weight or rate of weight gain is significantly below that of other children of similar age and gender. I had mixed emotions when they told me this. I was relieved that someone was actually taking Lilly’s weight issues seriously. I was a little sad that she was labeled with that since I am the mother and it is my responsibility to ensure thriving occurs. I also told myself not to be too concerned because failure to thrive is mostly something we can work with.
After listening to all the symptoms the doctor put her on a fiber plan and decided Lilly needed some blood tests. She said that her symptoms sounded a lot like Celiac Disease. Celiac disease is an immune reaction to eating gluten, a protein found in wheat, barley and rye.
Lilly did so amazing with the blood tests. They took 3 vials of blood from her. When we first walked into the lab they asked me if I was getting the blood tests. I told them no, that it was for Lilly and the lady visible cringed. She went to get someone in to help her. Lilly sat on my lap while they took the blood. She cried for about 5 seconds right when they pocked her and then for the rest of the time was so interested she didn’t say a word. She couldn’t stop watching. The ladies were so impressed with how well she did that they kept giving her prizes and telling her how wonderful she was.
Side Note: Lilly loves the doctor and any doctor tools. She loves going to the doctor with mommy and she thinks she is the doctor and nurse. She even does well when it is an appointment for herself. She gets really engrossed with everything and is super interested. She usually likes to bring her own doctor tools with her to mommy’s appointments and then tries to help. Blood and shots don’t seem to bother her and she wants to be right in the action. If she continues to be this interested I wouldn’t be surprised if she did something in the medical field. She would be a good Physicians Assistance.
About a week later the doctor called us with the blood test results. Everything came back normal. They checked her thyroid, vitamin D levels, and the celiac stuff. The doctor said we had two options. They suggested we do the next step in celiac testing and have an intestinal biopsy since her symptoms matched so well. I guess < 25% of people that tests come back negative end up having it, especially when the patient is so young. They also suggested we put her on an increase calorie plan and have a follow up appointment in 3 months to see if she has gained any weight. We decided to go ahead with the increase calorie plan. I figured it wouldn’t hurt to try this and we wouldn’t have to do any kind of surgery.
So for the last month and a half Lilly has been taking daily fiber and we have been increasing her calories. A lot of people have asked me what an increased calorie plan entitles. It is me following Lilly around the house with food. If she asks for candy or a snack I give it to her and she knows I’ll let her eat on the couch so she eats ½ of her meals there. But as long as she is eating I don’t care. I’ll fix the couch issue later. I have also been doing stuff like putting butter and extra mayo/sauces on her sandwiches, trying out new snacks, and giving her anything with a lot of fat in it. She has a treat after EVER meal. Usually moms are looking for the healthiest snacks at the store with the fewer amount of calories. I am looking for the less health items with the most calories. If a granola bar is dipped in chocolate – fantastic we will take 2 boxes. We still make sure she eats her full meals with fruits and vegetables but if she wants a bag of chips to go along with it I give it to her. (This is all doctor approved and suggested by the way.)
The fiber has really made all the different though. It has been a small miracle in the Harris household. She doesn’t have any more issues with cramping, bloating and constipation. Because her stomach feels better she is actually eating all of her meals and I don’t have to fight with her. She is in a better mood. It has been nice just seeing her feel better.
Our follow up appointment is in mid August. To me it looks like Lilly is starting to fill out. Her thighs are getting bigger and she has little love-handles. On our scale she has gained 1 pound; however, I don’t trust our scale that much. On my doctor’s scale she has gained 2 pounds but who knows if my doctor’s scale is the same as Lilly’s doctor’s scale. We will have to wait and see. If we go to the doctor’s and she still is small I think I am going to continue with the fiber plan and increased calories. She is doing so well with it I don’t feel like the biopsy is needed at this point of time.
Another Side Note: This area is an approved zone for celiac individuals to come on their mission. We usually have one missionary with the disease at a time. It makes cooking a meal for them difficult but it has been a learning experience for us. When I walked out of Lilly’s first doctor’s appointment one of the families in our ward was sitting in the waiting area. Hopefully having the celiac missionaries in the area isn’t making us all paranoid our kids have celiac disease.
Then when Lilly turned 2 she started having some digestive issues. The issues were causing extreme bloating, cramping, and constipation. She was having these ‘episodes’ about every 2 weeks. It was extremely difficult to see her in so much pain and not knowing what to do about it.
Around this time her eating habits also became very poor. I couldn’t get her to eat more than two bits of each meal. There were a couple of instances when she wouldn’t eat anything for a week straight and when I would call the pediatrician they would push me off and tell me it is normal toddler eating behavior. It was frustrating for me because I knew it wasn’t normal and trying to force Lilly to eat was causing a lot of bad feelings during meal times.
After a long discussion with Tyson and knowing that this year we would hit our deductable we decided it was time to take Lilly to a specialist. We were referred to a GI specialist that is based out of Iowa City and visited our area every other Friday. (A GI specialist is a doctor who specializes in diseases of the gastrointestinal tract.) The office is usually scheduled 3 months in advanced; however, we were able to get an appointment for the same week due to a cancelation. I feel like getting that early appointment was a big blessing for us.
When we went to the appointment they took Lilly’s weight and immediately labeled her has failure to thrive. Children are diagnosed with failure to thrive when their weight or rate of weight gain is significantly below that of other children of similar age and gender. I had mixed emotions when they told me this. I was relieved that someone was actually taking Lilly’s weight issues seriously. I was a little sad that she was labeled with that since I am the mother and it is my responsibility to ensure thriving occurs. I also told myself not to be too concerned because failure to thrive is mostly something we can work with.
After listening to all the symptoms the doctor put her on a fiber plan and decided Lilly needed some blood tests. She said that her symptoms sounded a lot like Celiac Disease. Celiac disease is an immune reaction to eating gluten, a protein found in wheat, barley and rye.
Lilly did so amazing with the blood tests. They took 3 vials of blood from her. When we first walked into the lab they asked me if I was getting the blood tests. I told them no, that it was for Lilly and the lady visible cringed. She went to get someone in to help her. Lilly sat on my lap while they took the blood. She cried for about 5 seconds right when they pocked her and then for the rest of the time was so interested she didn’t say a word. She couldn’t stop watching. The ladies were so impressed with how well she did that they kept giving her prizes and telling her how wonderful she was.
Side Note: Lilly loves the doctor and any doctor tools. She loves going to the doctor with mommy and she thinks she is the doctor and nurse. She even does well when it is an appointment for herself. She gets really engrossed with everything and is super interested. She usually likes to bring her own doctor tools with her to mommy’s appointments and then tries to help. Blood and shots don’t seem to bother her and she wants to be right in the action. If she continues to be this interested I wouldn’t be surprised if she did something in the medical field. She would be a good Physicians Assistance.
About a week later the doctor called us with the blood test results. Everything came back normal. They checked her thyroid, vitamin D levels, and the celiac stuff. The doctor said we had two options. They suggested we do the next step in celiac testing and have an intestinal biopsy since her symptoms matched so well. I guess < 25% of people that tests come back negative end up having it, especially when the patient is so young. They also suggested we put her on an increase calorie plan and have a follow up appointment in 3 months to see if she has gained any weight. We decided to go ahead with the increase calorie plan. I figured it wouldn’t hurt to try this and we wouldn’t have to do any kind of surgery.
So for the last month and a half Lilly has been taking daily fiber and we have been increasing her calories. A lot of people have asked me what an increased calorie plan entitles. It is me following Lilly around the house with food. If she asks for candy or a snack I give it to her and she knows I’ll let her eat on the couch so she eats ½ of her meals there. But as long as she is eating I don’t care. I’ll fix the couch issue later. I have also been doing stuff like putting butter and extra mayo/sauces on her sandwiches, trying out new snacks, and giving her anything with a lot of fat in it. She has a treat after EVER meal. Usually moms are looking for the healthiest snacks at the store with the fewer amount of calories. I am looking for the less health items with the most calories. If a granola bar is dipped in chocolate – fantastic we will take 2 boxes. We still make sure she eats her full meals with fruits and vegetables but if she wants a bag of chips to go along with it I give it to her. (This is all doctor approved and suggested by the way.)
The fiber has really made all the different though. It has been a small miracle in the Harris household. She doesn’t have any more issues with cramping, bloating and constipation. Because her stomach feels better she is actually eating all of her meals and I don’t have to fight with her. She is in a better mood. It has been nice just seeing her feel better.
Our follow up appointment is in mid August. To me it looks like Lilly is starting to fill out. Her thighs are getting bigger and she has little love-handles. On our scale she has gained 1 pound; however, I don’t trust our scale that much. On my doctor’s scale she has gained 2 pounds but who knows if my doctor’s scale is the same as Lilly’s doctor’s scale. We will have to wait and see. If we go to the doctor’s and she still is small I think I am going to continue with the fiber plan and increased calories. She is doing so well with it I don’t feel like the biopsy is needed at this point of time.
Another Side Note: This area is an approved zone for celiac individuals to come on their mission. We usually have one missionary with the disease at a time. It makes cooking a meal for them difficult but it has been a learning experience for us. When I walked out of Lilly’s first doctor’s appointment one of the families in our ward was sitting in the waiting area. Hopefully having the celiac missionaries in the area isn’t making us all paranoid our kids have celiac disease.
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| Lilly has set up a picnic in this picture with all of her snacks...and don't forget koala |
Sounds like you made the best decision!
ReplyDeleteGood work Karen! You are a champ. Nothing harder than a kid with tummmy troubles. Can't wait to see little Bennett.
ReplyDeleteWOW! I remember you asking me about the fiber thingy. I didn't realize you were having so much trouble! How did she do on her appointment in August? Sorry I slacked on keeping up on things. I hope she's doing better. I love that little girl! Give her hugs for me!
ReplyDelete