A baby diagnosed with GERD, a tired mother who kept fighting for answers, and a new beginning. Today’s post is from Cherie, a reader of this blog who originally shared her story with me via email. She willingly agreed to share her story publicly, knowing that her difficult journey could help others to avoid the pain that her daughter and her family went through. Thank you Cherie.
My name is Cherie. In 2007 I gave birth to our second child, a beautiful baby girl. She came quickly and was just perfect. Little did I know that this would begin an often difficult and heart wrenching journey. It started right away. Because of a surgery I had when I was younger I was unable to breastfeed my babies. So the nurse gave me some formula for Abigail, but she would not eat it. I should have know something was up — our son, born less then 2 years earlier, ate his first bottle like nothing. But not Abigail. She just would not eat. She just wanted to sleep. We tried so many different things to get her to drink. Finally a nurse decide to try putting the formula in a little medicine cup and putting drops on her lips. Eventually, she started drinking, but we ended up staying in the hospital for 5 days.
When we got home, her feeding issues continued. She never wanted to eat. And when she did she would cry and scream. She would violently spit up. She would throw up. Off to the pediatrician we went. She was diagnosed with GERD. Then put on Zantac. It did not really help. She was still crying and screaming, when I could get her to eat. It was so difficult for me. I was a stay at home Mum, and had Connor who was not even 2 yet. My husband worked a lot and I felt so overwhelmed with this little one who would just scream for hours on end. Abigail needed to be constantly held. She never, I mean NEVER, slept. She would sleep for 20 minutes to half an hour at a time, even at night time. She never napped. When she did sleep she would reflux in her sleep and start gagging and often turned blue from everything settling in in her mouth and throat. I was scared to death to let her sleep in her room because I thought she would choke to death. We did all the typical things: raised her bed, tried to tuck her in so she would not slide down. Nothing really helped.
Finally, after going to the doctor for the millionth time, I took her to the ER. (We live about 45 minutes from the doctor, so every time I would load her up in her screaming pain, she would get comfy in the car and be all calm by the time I got there. This would lead to a “crazy Mommy” label that I am sure was passed around the office.) I refused to leave the ER without some answers. They were not very happy with me. But they did an x-ray (I am sure to pacify me and get me out of there). During the x-ray they found that her whole stomach area was black and hazy on the picture. That meant she was full of gas. And they found that her stool was backed up all through her intestines. I had no idea how this could happen since she was regularly having movements. The doctor said she need to go on a milk and soy-free formula. It was the most foul smelling stuff ever. But she finally would drink it. I believe this was about the age of 3 months.
We discussed with her pediatrician what to do next. We have an amazing pediatrician, but I am sure some of that “Loony Mum” label led her to a more wait-and-see approach. We have PPO insurance, so we decided we would just schedule a consult with a Pediatric Gastroenterologist ourselves. We found a great one in Portland, Maine. She put Abigail on Prevacid (and Zantac, at times) and we scheduled an endoscope. I must say, that it is the worst feeling in the world, placing a gas mask on your 5 month old baby and leaving her there with the nursing staff. After the endoscope, she had a bad reaction to the medicine, and ended up violently throwing up and choking on her throw up. She turned blue and was ripped from my arms by the nurse to suction her mouth and throat out. Eventually, she recovered and we were sent home.
Over the next 2 years we tried different medicines for the GERD. On one, off another. At one point we took her off all meds, hoping that she would just grow out of it. It did not happen. She just would not really eat much. Another thing that was a bit of an anomaly was that she was growing well. She was super smart and meeting every milestone. So a lot of responses I got, like the New Year’s Eve night we spent admitted to the hospital, “she is too cute to be sick!” My response: give her 5 minutes and she will be throwing up everywhere! During this time she was still not sleeping very much. Her little belly was so distended and hard she looked like she was having a baby. She would only eat a few things … of course they were all the heavily gluten-containing foods like bread, crackers and stuff. Her emotional state was just off the wall. She would cry if you looked at her the wrong way. She would be so happy one minute and violently upset the next. She would throw things and scream at you. And being so young, it was even more difficult because she could not just tell me what was going on. We always just said, “well, she is a girl.” Or she is just “picky.” All those typical labels. Another thing was that she had was a rash around her mouth. I also thought it was from her pacifier but when the pacifier went away the rash would still appear.
In June of last year we did her second endoscope. Her gastroenterologist wanted to check to make sure her reflux was not doing too much damage. She had not been feeling well, and was getting sick more often. She just was not her “normal” that I was used too. I got a call from the doctor saying we would like you to come on in. Hmm … my stomach started churning. (Now, I went to college for medical assisting and human services, so I have some knowledge of medical terms and anatomy.) So she started talking to me about how they found damage in her intestines and that it was too severe to her villi to just be from acid reflux. It is probably from Celiac Disease. OK …what now??? Should we take her off all gluten? Should we wait? What in the world do I do now? I went home, shocked and scared to death. I am the type of person who needs information. I need to know everything, the good and the bad. So I started googling. And I read everything I could find. The next day I took her for an appointment to her pediatrician, and relayed all the info I received. We agreed she needed to come off all gluten … now!
So that started our journey into GF life. It has been a crazy one. I went out and bought a bunch of stuff … something I do not recommend. I spent hundreds of dollars, something that is unfortunately, unavoidable. But I needed food for her. I did not know what kind … just food. In all my research I did in those first days I never looked at what others thought was good food. I just needed to know what she could eat.
I am telling you this with all honestly, and mean this very literally. Within days … yes, days … she was sleeping through the night. She was eating. She was HAPPY! The change was remarkable. I could barely believe it. I am sure if someone were to tell me this story I would say “Ya right!” Without seeing such a dramatic change with your own eyes it is very difficult to understand. We have not been back to her gastroenterologist yet (we have appointment this month) but I have spoken with the nurses on the phone. And even they cannot believe it.
It has been about 6 months now since we started and she is off gluten. I have to be honest and say that she does get some, though not intentionally. But I can always tell when she has had something she is not supposed to. She complains of her belly hurting. She gets very upset and cranky. And that pesky rash usually comes back. I must say, I was scared at how she would do, not being able to eat her favorite things, since she is only 3. She took to it like nothing. She is so PROUD to be GF and tells anyone who will listen. I have found ways to make all those favorites and we all eat a lot better now.
One of the most challenging things, though, is other people. For some reason some people think this is not a real disease. That she does not really need to not eat gluten. It is like they think it will not hurt her. Well, I tell them, “you come by my house tonight when she is crying in pain and throwing up because you think she needs to eat that gluten filled food!” There are those who cannot take the time to research it, or just listen when it is explained to them. It is very tough. Thankfully Abigail knows, though it is not as easy as her knowing she cannot eat peanuts, because she still eats bread, just GF bread. So it is a bit harder. I take every precaution to insure she is eating safely. I call ahead to birthday parties and family gatherings to see what they are having. I make the same thing for her (or as close as I can) so that she does not feel odd or left out. I never expect that someone should make something completely different for her, but some in my family do that or they choose to have something that is just naturally GF. And that is so amazing.
It has been a difficult journey, but one I am so glad we are taking now and not after years and years of her suffering. And I know it is just the beginning. If I could tell you one thing: listen to yourself. No one knows your child like you. Fight for them at all costs. It does not matter how crazy everyone thinks you are as long as you find out what is wrong with your child. There is absolutely nothing more important.
So that is our story, so far. I hope that by reading it you get a little light into Our Gluten Free Life! It is not a typical one, but it is ours and I love it.
I love a happy ending-beginning! If you have a story of symptoms and diagnosis related to celiac disease, gluten intolerance or food allergies that you would like to share, please email me.