My Daughter's Journey - A Letter To My Daughter

[Jemms1028]

I thought I would write a letter to my daughter telling her the journey of her diagnosis, just incase when she is older she may want to read what she has already overcome. I thought that anyone else that maybe starting the process of getting their children diagnosed maybe interested, so feel free to read it if you would like.

 

When you were born, you became the light of our life. You were an amazing baby that loved to snuggle and watch what everyone was doing; such an observant little girl you were. Although like your sister, you spit up all the time (but you were a bit worse), it was never ending loads of laundry in our house. On your first day of daycare, your daddy told the daycare provider that he will have to buy her a poncho because you spit up so much, and she just laughed saying that you can’t be that bad, and she has seen her fair share of spitty babies, but when we picked you up at the end of the day, the daycare provider said that she will take us up on our offer of buying her a poncho, (I think you were officially crowned the queen of spitting up). Almost from day 1 you would have bowel issues. There were times were you would be going at least 10 times a day, and then all of a sudden it would stop and you wouldn’t have a bowel movement for 2 weeks. By that time I was starting to get concerned, and brought you in to the doctor’s office, and they just kept telling me that it was normal and to give you a little prune juice. After a few days on prune juice, the cycle would start again.

 

By 5 months old we started you on baby cereal, and little Gerber puffs. You loved those puffs and baby cereal, but it was very obvious the baby food didn’t like you too much, and we had to stop giving it to you for a month and see if by 6 months you were able to tolerate it better. By 6 months you were able to handle the cereal and puffs better (but you still were having bowel issues and spitting issues but it was better than before) but starting new baby foods again at 7 months old became a problem. Your bowels just didn’t like the food, you would become so constipated and again we would start the cycle of prune juice for a few days, followed by weeks of diarrhea multiple times a day that wouldn’t end. At your 6 month and 9 month apt, your growth slowly decreased, and your weight was stabilizing; not a good thing for a 6 and 9 month old seemingly healthy child. I was starting to get fed up with the doctor telling me that there was nothing wrong. You were no longer the happy baby we took home from the hospital. You would scream as if someone was killing you and you only wanted to be held, you were no longer interested in what was going on in the world like you were before, your whole personality changed. I knew something was wrong. I kept saying it to whoever would listen, and most of the time, if fell on deaf ears. I was now thinking that everyone else thought I was crazy and just another over protective mother.

 

At your 9 month doctor’s appointment the doctor FINALLY gave in and gave me meds for your spitting up problems, and it help tremendously with your reflux. You were no longer spitting up everything you ate (only sometimes), and now gaining weight like a normal child should, but your growth was still quite a bit slower. By a year old, you were no longer on the growth charts for your height, and I was getting increasingly worried, but the doctor didn’t think it was as big of a deal as I was making it and just said if it continued then we would start growth hormones. After that statement I started to look for another primary doctor for you.

 

When we had your first doctor’s appointment with your new doctor it was as if I finally found someone that would listen to me and actually take me seriously. After leaving from that first appointment I was overwhelmed with all the new doctor appointments that was now placed on our to-do list, but so unbelievably thankful that FINALLY someone is listening to me. A week later we were in with the dermatologist for the intense red/purple color that would come periodically on the back of your arms and legs and the strange rashes you would have. They offered no help, and I was a bit discouraged. After another week we were off to see the allergist. I was excited for the allergist. I thought if there was anyone that was going to help us, it was going to be them. Well I was mistaken. I was told that you were fine and to be thankful for a healthy child. Well you were anything but healthy; you were miserable. Screaming most of the time, constant diarrhea and constipation issues, rashes, still spitting up at 16 months old, and falling off the growth charts in percentiles…you were anything but healthy, you were starting to get into what they call ‘failure to thrive.’

 

The next appointment was the gastroenterologist, 2 weeks later (August 9^th), and I seriously remember thinking of canceling it. I was getting discouraged and thought that maybe it would be another doctor that wouldn’t listen to me and think that I was just another crazy over protective mother. Luckily I didn’t cancel the appointment, and just went into that appointment feeling defeated. We got called into the room when a nurse started to ask questions about you and your symptoms. She took a VERY intense history that would last 45 minutes. While she was taking your history, I all of a sudden felt this appointment was going to be different than the rest; I felt her true concern for you and for the first time, in front of a doctor and nurse, I let my guard down and thought that I think this doctor is really going to help you. I felt such a sense of release as every question I answered was getting us closer to the answer as to what was going on. When we got to see the doctor, he came in, sat down and rolled his stool close to me with his pad of paper in hand and said those words I will never forget, ‘I think she may have Celiac Disease.’ He wanted to run a Celiac blood panel to see, but in the meantime he scheduled an x-ray and Upper GI. August 30, 2012 was one of the worst days that we had to go through with the Upper GI, but we made it through and September 6^th we went back to see your GI and the blood work did come back slightly elevated so now it was time to schedule the endoscope.

 

October 1^st you had the endoscope and did magnificently. He couldn’t find any damage, but it had to go to pathology before we could get the full report. 9 long days later, I get a call at work from the doctor himself to tell me you have Celiac Disease. At the time it was such a mixed emotion, I was so happy that they finally found what was making you so miserable, but I was mourning the loss of my healthy child. I didn’t even know where to begin, I didn’t know how to feed you, or what to feed you; I was so overwhelmed with what this new desease and life style that I spent the whole day wracking my brain trying to figure out what you were going to eat. Now almost 2 years later, I write this, and I can see what a blessing this experience was. Daddy and I are still both learning and trying new things, but with each attempt with a new food, or a new way to cook something, we are getting a little bit more knowledgeable in how we can take care of you. We’ve all learned so much going through this together, and even though it’s been really rough sometimes, I’m grateful that we finally found the right doctors that listened and you didn’t have to suffer even longer than you already did. And now look at you; you’re finally that happy, healthy and beautiful little girl I remember bringing home from the hospital.

[cyclinglady]

How lovely!

Keep it. It may someday benefit a niece/nephew or grandchild too.

[IrishHeart]

This is a lovely letter and I hope you have both been tested as well ---and your other child, too..

 

You are a most excellent Mom, fighting for her baby's health.

 

Good on you! May your child  live a long and healthy life. 

 

I suggest the book Real Life with Celiac Disease by Melinda Dennis and Daniel Leffler. Lots of good articles

and some good info for parents and families as well.

 

Best wishes!!

[JennyW]

What a wonderful story....and one that felt like I was writing it for my little girl!  It seems we shared very similar experiences.  Thanks for sharing and so glad our littles are finally healthy and happy again!!

 

I thought I would write a letter to my daughter telling her the journey of her diagnosis, just incase when she is older she may want to read what she has already overcome. I thought that anyone else that maybe starting the process of getting their children diagnosed maybe interested, so feel free to read it if you would like.

 

When you were born, you became the light of our life. You were an amazing baby that loved to snuggle and watch what everyone was doing; such an observant little girl you were. Although like your sister, you spit up all the time (but you were a bit worse), it was never ending loads of laundry in our house. On your first day of daycare, your daddy told the daycare provider that he will have to buy her a poncho because you spit up so much, and she just laughed saying that you can’t be that bad, and she has seen her fair share of spitty babies, but when we picked you up at the end of the day, the daycare provider said that she will take us up on our offer of buying her a poncho, (I think you were officially crowned the queen of spitting up). Almost from day 1 you would have bowel issues. There were times were you would be going at least 10 times a day, and then all of a sudden it would stop and you wouldn’t have a bowel movement for 2 weeks. By that time I was starting to get concerned, and brought you in to the doctor’s office, and they just kept telling me that it was normal and to give you a little prune juice. After a few days on prune juice, the cycle would start again.

 

By 5 months old we started you on baby cereal, and little Gerber puffs. You loved those puffs and baby cereal, but it was very obvious the baby food didn’t like you too much, and we had to stop giving it to you for a month and see if by 6 months you were able to tolerate it better. By 6 months you were able to handle the cereal and puffs better (but you still were having bowel issues and spitting issues but it was better than before) but starting new baby foods again at 7 months old became a problem. Your bowels just didn’t like the food, you would become so constipated and again we would start the cycle of prune juice for a few days, followed by weeks of diarrhea multiple times a day that wouldn’t end. At your 6 month and 9 month apt, your growth slowly decreased, and your weight was stabilizing; not a good thing for a 6 and 9 month old seemingly healthy child. I was starting to get fed up with the doctor telling me that there was nothing wrong. You were no longer the happy baby we took home from the hospital. You would scream as if someone was killing you and you only wanted to be held, you were no longer interested in what was going on in the world like you were before, your whole personality changed. I knew something was wrong. I kept saying it to whoever would listen, and most of the time, if fell on deaf ears. I was now thinking that everyone else thought I was crazy and just another over protective mother.

 

At your 9 month doctor’s appointment the doctor FINALLY gave in and gave me meds for your spitting up problems, and it help tremendously with your reflux. You were no longer spitting up everything you ate (only sometimes), and now gaining weight like a normal child should, but your growth was still quite a bit slower. By a year old, you were no longer on the growth charts for your height, and I was getting increasingly worried, but the doctor didn’t think it was as big of a deal as I was making it and just said if it continued then we would start growth hormones. After that statement I started to look for another primary doctor for you.

 

When we had your first doctor’s appointment with your new doctor it was as if I finally found someone that would listen to me and actually take me seriously. After leaving from that first appointment I was overwhelmed with all the new doctor appointments that was now placed on our to-do list, but so unbelievably thankful that FINALLY someone is listening to me. A week later we were in with the dermatologist for the intense red/purple color that would come periodically on the back of your arms and legs and the strange rashes you would have. They offered no help, and I was a bit discouraged. After another week we were off to see the allergist. I was excited for the allergist. I thought if there was anyone that was going to help us, it was going to be them. Well I was mistaken. I was told that you were fine and to be thankful for a healthy child. Well you were anything but healthy; you were miserable. Screaming most of the time, constant diarrhea and constipation issues, rashes, still spitting up at 16 months old, and falling off the growth charts in percentiles…you were anything but healthy, you were starting to get into what they call ‘failure to thrive.’

 

The next appointment was the gastroenterologist, 2 weeks later (August 9^th), and I seriously remember thinking of canceling it. I was getting discouraged and thought that maybe it would be another doctor that wouldn’t listen to me and think that I was just another crazy over protective mother. Luckily I didn’t cancel the appointment, and just went into that appointment feeling defeated. We got called into the room when a nurse started to ask questions about you and your symptoms. She took a VERY intense history that would last 45 minutes. While she was taking your history, I all of a sudden felt this appointment was going to be different than the rest; I felt her true concern for you and for the first time, in front of a doctor and nurse, I let my guard down and thought that I think this doctor is really going to help you. I felt such a sense of release as every question I answered was getting us closer to the answer as to what was going on. When we got to see the doctor, he came in, sat down and rolled his stool close to me with his pad of paper in hand and said those words I will never forget, ‘I think she may have Celiac Disease.’ He wanted to run a Celiac blood panel to see, but in the meantime he scheduled an x-ray and Upper GI. August 30, 2012 was one of the worst days that we had to go through with the Upper GI, but we made it through and September 6^th we went back to see your GI and the blood work did come back slightly elevated so now it was time to schedule the endoscope.

 

October 1^st you had the endoscope and did magnificently. He couldn’t find any damage, but it had to go to pathology before we could get the full report. 9 long days later, I get a call at work from the doctor himself to tell me you have Celiac Disease. At the time it was such a mixed emotion, I was so happy that they finally found what was making you so miserable, but I was mourning the loss of my healthy child. I didn’t even know where to begin, I didn’t know how to feed you, or what to feed you; I was so overwhelmed with what this new desease and life style that I spent the whole day wracking my brain trying to figure out what you were going to eat. Now almost 2 years later, I write this, and I can see what a blessing this experience was. Daddy and I are still both learning and trying new things, but with each attempt with a new food, or a new way to cook something, we are getting a little bit more knowledgeable in how we can take care of you. We’ve all learned so much going through this together, and even though it’s been really rough sometimes, I’m grateful that we finally found the right doctors that listened and you didn’t have to suffer even longer than you already did. And now look at you; you’re finally that happy, healthy and beautiful little girl I remember bringing home from the hospital.