Shortly after her first birthday, my mom and I decided to take a road trip with all four kids, up to my parents cabin which was a 6 hour drive. I packed the usual snacks: cheerios, bananas, cheeze-its, and a whole gallon of milk to survive the ride. C, like most one year olds was not a fan of being trapped in her car-seat, so we kept refilling her sippy cup with milk and passing out the cheerios. The second day at the cabin C started having diarrhea. It was constant. We were going through 10 or more diapers a day and she was up several times a night crying. She got horrible diaper rash that was so bad her skin was peeling off her. We stayed at the cabin for two weeks and the poor thing had diarrhea the whole time and not normal diarrhea, it was pale and fatty looking and smelled worse then anything I had ever smelled. I called our family doctor on the way home and set an appointment for the next day.
Fast forward four months and C still has diarrhea. My doctor had run out of tests to run on our daughter and so we were sent to GI specialists at one of the best children's hospitals who told me that since C was still growing it must be Toddlers diarrhea, which basically meant I was giving her too much juice. I tried to explain that she had one glass of juice a day and it was watered down. The doctor reexplained that she was still gaining weight so she was fine and that she would see us in three months. It didn't seem to matter to the doctor that my daughter's backside was missing several layers of skin.
I also need to add in here because of my personal feeling on the matter, my kids are on a delayed vaccination schedule and since C had been sick her vaccinations were very behind.
We returned to our family doctor for a check up and C was given two vaccinations to try and get her caught up with the regular vaccination schedule. 24 hours later we were in the ER and C was diagnosed with pneumonia. We never made it back to the GI doctor for our 3 month check-up because C developed breathing problems. Since she was under the age of 3 she was never given the diagnosis of asthma but we spent at least 6 days of every month over the next year in the hospital with severe asthma attacks. C was put on 3 different medications including 2 steroids to try and keeps her attacks under control. Her diarrhea did eventually stop, but now we had a new problem. Every time C received a vaccination, we were in the hospital 24 hours later with pneumonia. Luckily our family doctor saw the pattern and has put all vaccinations on hold. Even without the vaccinations though, every time C got a runny nose we knew an attack was going to be happening soon.
We were eventually sent to an allergist and had a whole battery of tests run on C to try and figure out what was causing her attacks. Everything came back negative.
C last major attack was June of 2012. We celebrated my dad's birthday one night with cake and ice cream. By 11 p.m. we had given her every medication we had at home, her inhalers and nebulizer treatments, and C could still barely breath. My husband took her to the E.R. and I sat at home with our other children. An hour later he called me asking about what a tracheotomy was and how bad was it that her O2 level was in the 70's. In the background I heard two people arguing about who had to be the one to give her the tracheotomy when the child couldn't handle anesthesia and who would hold her down while they were cutting. I wanted to run to the hospital right then but I had 3 other sleeping children at my house. While I was still on the phone I heard what I assume to be a nurse yell that C's O2 stats jumped to 83% and the doctors got quiet. I asked my husband what was happening and he said all the doctors went just outside the room and were talking and he would call me back.
C was in the hospital for 3 more days and was eventually released with 2 more medications to take every day. When we finally returned the following week to the doctor for our check-up, we were given horrible news. We were told that no one had any idea what was causing her attacks and that if C stayed on these medications she would have kidney failure, but if she continued to have her attacks, she would need that tracheotomy. The doctor mentioned the possibility of celiac's disease but said that she could not be tested because the test would require someone so young to need anesthesia and C would most likely not survive anesthesia.
We were so lost. The following week our 8 month old baby started with the same smelly strange diarrhea as C. I knew I couldn't watch another child go through the same health challenges, so we made another appointment with our family doctor to see if there was anything else we could do. After reviewing all of Cs tests and lab work from the last year and a half, she suggested we just assume it was a food allergy. She said we had to eliminate everything from her diet. Everything. Just feed her vegetables and lean meats, and see what happened. The only problem was that C was a very sneaky little girl. She would go in the pantry and find food or grab food off her siblings plates when we were doing dishes, so the only way to make sure she did not get any food that would hurt her, the whole family had to eat the same way. We had also decided that because the diet was so strict it would be cruel if C had to watch the rest of us eat food she liked so we were going to do this as a team!
After our doctor had suggested that we treat her attacks as food allergy reactions, I started researching everything I could about food allergies. Her symptoms eliminated most food allergies except dairy and gluten allergies and because C's lab work had shown that she had a very high level of inflammation, her symptoms matched Celiac's disease. http://www.celiaccenter.org/symptoms.asp I also noticed that several of my other children had symptoms on the list of gluten sensitivity. http://www.celiaccenter.org/gluten_faq.asp#symptoms
I realized that maybe this team work approach would probably really benefit all of my children and not just C. The other thing I realized was that many of the symptoms of a dairy allergy and a gluten allergy were very similar so we needed to avoid both. I had noticed very early on when C's attacks first started that every time she had milk, she would get a runny nose and she would get discharge coming out of her ears. GROSS.
Here is a list of some of the other site that I found really helpful:
Gluten Intolerance/Celiac Disease-
I also began watching several documentaries, trying to find out as much information as possible about how food affects our bodies and to see if there was anything else we should be doing to get our daughter healthy and basically save her life. One of the first documentaries we watched was "Forks over Knives". There was so much great information in the documentary but one of the most important piece of information that we needed right then was that the animal protein Casein, was found in anything that came an animals, including meat and dairy products, causes inflammation in our bodies when we consume it. Since inflammation was C's biggest problem we decided to eliminate meat from our diet too. I spent the next week getting rid of just about all of the food in our house. It turns out that dairy is in just about everything. We learned to not only read ingredients in our food better, but that dairy was often not listed in the ingredients and we had to check for the tiny D symbol on the front of packages to know for sure that it was dairy free.
For a whole month we ate only fresh fruit and vegetables. It was hard and the kids complained and what made it even harder was that even our extended family complained. No one believed that food allergies could cause the problems that C had and that we would starve to death without meat, dairy, and gluten in our diet.
Here are some of the other documentaries we really loved:
"Fat,Sick,and Nearly Dead"
"The Gerson Miracle"
The results we had in just one month was amazing. C was off all medications, no attacks, no runny nose, no ear problems, the swelling in her face went away and she was finally sleeping good! We also saw dramatic improvements in our whole family. I will post about that soon!