To provide a quick summary, Aidah (pronounced Ada), has been has on medication for GERD since she was four months old. She was a miserable baby, crying for 8+ hours a day. She vomited constantly and we were at a complete loss with what to do with her. Around the age of 18 months, we found that her reflux was "under control" when she was taking HUGE doses of Prilosec. She was taking twice the dose that my husband was taking. But she still didn't feel well, eat well, or sleep well. I wrote this last April, after she turned 4:
Just telling people she has "heartburn" or "reflux" really doesn't
communicate the severity of her condition. She lies awake for several
hours at night; we had a 24 hour pH study done, and they found that she
had bile sitting in her throat for over an hour straight during the
night. She can't swallow a lot of normal foods, including noodles. She
vomits in her mouth on a regular basis. She doesn't like a lot of
foods because they hurt her tummy. She's been underweight most of her
life. I have spent many nights sitting on the floor next to her bed
just rubbing her tummy, promising that if she just relaxes and falls
asleep, she will feel better. But she won't. I've had to give her
high-powered ulcer medicine in the middle of night and then tell her no
over and over again when she asks for water, tears running down both of
our faces. When she is sick with a cold, we have to put a bowl next to
her bed for her to spit up in, and then I've had to wash the bile out
the next morning. Her behavior suffers, and is almost completely
dependent on how her stomach is feeling that day.
She is an extremely difficult child, and tries my patience on a daily
basis. But that is not the worst, the worst part is having to watch her
suffer, watching her cry and then smelling the vomit on her breath that
is sure to follow. Watching her struggle to eat every day, watching
her deal with sleep deprivation. I wish I could take her pain; the bond
forged between Aidah and I is deep. She only wants mama in the middle
of the night. Until a month ago, I hadn't ever spent a night away from
her. How do you deal with a chronically ill child?
Not long after I wrote this, her issues took another turn. She started to have problems urinating. She would scream in pain when she had to go to the bathroom, refuse to go, and then have accidents. Over the period of four months, we took her to the emergency room FIVE times wondering if she had bladder infections. Only two of those five times, the doctors decided she "may" have a UTI, but the evidence wasn't conclusive. It was very difficult to discern what to do with her. The more we brought her to the doctor for pain "down there," the more we were questioned about what could be going on. Unfortunately, in our society when a little girl has problems like this, doctors have to wonder if there is some sort of abuse going on.
Our pediatrician finally wrote us a referral to see another specialist up at Doerenbecker Children's Hospital. After a day of testing, they came away with the conclusion that she was slightly constipated and that her bladder was having spasms. We were sent away with a prescription to numb her bladder for six months to help it calm down and the promise of "no side effects" for this medication. I went to the pharmacy to have it filled and asked the pharmacist about possible side effects. He assured me that she would have dry mouth and blurred vision while on this medication. I came home extremely distraught over the thought that my four year old was not only going to be on another medication, but one with these side effects for the next six months.
Thank goodness for my husband, who just said NO - we are not giving her that medication. There has to be other answers. I have to say, up until this point, I wasn't keen on natural medicine. My husband has seen close to 10 naturopaths for chronic migraines, and they have all charged him a lot of money, told him different things, and we haven't seen anything work. I was skeptical, but after seeing some of the top doctors in the nation at Doerenbecker's and coming away with these conclusions, I was desperate.
We saw a naturopath that was recommended to us by a friend; it was relieving to hear Dr. Walker say, "yes, all of these issues are connected and they can be resolved." She ordered a blood test for food intolerances, and sure enough, Aidah came back intolerant to wheat, dairy, and egg. I really don't even know what to say next, except that this has been one of the most challenging things I have experienced as a mother, but it has been life-changing. It has been a little over six months and SHE IS A NEW KID. I tell you this long back-story to try to help you appreciate how far she has come. While we were in the midst of these problems, I was looking up ADHD, Turrets Syndrome, Autism, and other diseases. She had behavioral problems and I knew something wasn't right. Now, she eats normally, she grew 4 inches in about two months, her hair became healthy and thick, she doesn't cry all the time, she can sit still, she sleeps through the night, she doesn't have bladder problems, and SHE IS COMPLETELY OFF REFLUX MEDICATION. Please remember, she was on HUGE doses of this stuff since she was FOUR months old. It truly has been life-changing- she's healthy and happy.
Let me just say that it hasn't been easy. Cooking and feeding my family is a huge challenge every day. Wheat is in everything. I have to read all labels, all the time. Going out to eat is difficult, as is going over to people's houses. Grocery shopping takes twice as long, and there aren't a lot of "quick and easy" options for dinner. I spent the first two months grieving. Grieving over the loss of many family recipes, grieving at how complicated food had become, and grieving for Aidah, that she will never be able to go a birthday party and have pizza and cake like the rest of the children. I have learned that she is much more resilient than her mother, and it doesn't really bother her. She will be around other kids who are eating cookies, and she just tells them "no, I can't have gluten." I can remember during the first several weeks of our new lifestyle, I was walking through the grocery store by myself, tears in my eyes, saying "it's OK, I can do this," over and over. It wasn't until someone looked at me strangely that I realized I was talking OUTLOUD. It has been a huge adjustment, and very overwhelming at times, but it is getting easier; and it's WORTH IT. It's worth it every time I see my happy, healthy, growing child. I truly marvel at the change in her.
I know this is long, and if you are still reading, thank you. I just want to encourage anyone who thinks their health just "isn't quite right", especially moms who have suspicions about the health of their children - look into food allergies and intolerances. We think of our bodies as indestructible, and treat them like we can feed them whatever we want, and that simply isn't true. There are hundreds of symptoms that can be traced back to food intolerances. I will write more later, about dealing with having a little gluten-free girl, to other people in my family who have now been tested. Remember that I mentioned my husband and his chronic headaches? He was tested and now with a diet change, after 9 years of headaches, they are pretty much gone. It is amazing. If you have any questions, please feel free to contact me, my email address is in the sidebar, I love talking with people about it!