The nebulizing helped Maya’s breathing issues tremendously.
Four times a day we’d cuddle on the floor or couch, try to read a story over the noise of the nebulizer, and I’d try to keep the medicine going in her mouth or nose as she breathed. It was imprecise, but it helped.
At this point this was the only thing that was helping any of her issues and I was pretty excited about it.
Jesse, our first son, was born in January of 2006. He was comepletely different. Of course he had different personality and all but that wasn’t all. He didn’t have any medical issues. At all. He was just happy, bouncy, cuddly, and sweet with nothing else going on. He thankfully broke down the wall that I couldn’t seem to get through or see over to help my daughter.
We waited for months to get Maya in to see a pulmonologist. Once we were finally able to make an appointment (the spring of 2006) Maya was a quick asthma diagnosis. She apparently also showed signs of cystic fibrosis but the sweat test was negative. We got her set up with inhalers and singulair and our life improved quite a bit. Suddenly we were able to travel without worrying about having an outlet to plug the nebulizer into. Her breathing treatments went down from four times a day to two puffs two times a day.
All the while we are still dealing with severe reflux, eczema, and lots of hives.
I began to see patterns in her projectile refluxing and realized that cows milk was a major no-no. She could handle full fat whole milk, but 2% caused curdled reflux. I decided to pull cows milk out of her diet as a drink and gave her soy milk instead. The eczema intensified at this point. She no longer refluxed curdled milk though, so I stuck with the soy milk and slathered her in copious amounts of lotion.
At this point I was beginning to think that we were dealing with more than just GERD and sensitive skin and questioned our pediatrician. I still didn’t have the words ‘food allergies’ but our pediatrician did. She recommended that we get Maya set up with an allergist as soon as possible to see if she was dealing with any food allergies.
Maya had her very first skin test August 6, 2006. Friends, it was eye opening. This poor child tested positive to just about everything. It was awful. They used three grids with at least 10 little skin test pokies on each, and Maya’s skin bubbled up at just about every little stick.
If you ever experience what I’m about to tell you right now I want you to immediately leave and find another allergist. Please, I beg of you.
The allergist came in, dictated the results to a nurse who wrote them all down, told me I needed to avoid at least 10 different foods (all of the foods in a normal American toddler’s diet) and sent me on my way. Oh, and he gave us a prescription for an epi pen and told me to keep it with me at all times.
That was it.
No education, no help, no instructions, no questions, just bummer, your kid can’t eat much at all, good luck with that.
He did try to set us up with a dietician though, which was sort of nice of him. It was nice up until I met with her.
Our list of foods to avoid was as follows:
I showed the dietician our list and she looked at me with bewildered eyes and told me that Maya could eat rice. That was all she could come up with. Wonderful, right? If that’s all your dietician can tell you, find a new one, please. One that works in a food allergy clinic is usually very helpful and knowledgeable.
I called the allergists office and told them how ‘helpful’ the dietician had been and they mailed me a list of foods that Maya should be able to eat. Bison, fish, turkey, rice, and fruits and vegetables.
At this point the food allergy community online didn’t have much to offer. There was very little information aside from the “what is a food allergy” question.
I was a good cook, but an inexperienced one. I did the best I could with what I had, but our food choices were rather slim on a very young couples budget. I spent an unbelievable amount of time researching, learning, trying new things, and working my rear off to make sure my little girl could eat. It was a massive learning curve. I learned a ton.
Reflux continued, but at this point Maya was so used to it she’d just catch it and swallow it. I know that’s gross, but that’s the way it was/is.
Joshua, our third, was born in September of 2007.
We had to wait for about two years before we could have Maya re skin tested and see if some foods had been regained. In May of 2008 Maya gained beef, wheat, tomato and potato. I made her a giant burger and fries to celebrate. My aunt, who was with us to help me with the boys during the skin test, was very unimpressed with the level of care the allergist had demonstrated. She was actually angry that I had been dealing with that for so long and didn’t know any better.
Unfortunately I didn’t worry about it much at that point because we had just been introduced to the possibility of EoE.
In August of 2008 we began our EoE saga with the Children’s hospital two hours away from home.
Maya was biopsied and scoped and the results came back negative.
The nurse practitioner we had been assigned and I did not get along very well.
At this point I had learned an enormous amount of information about food allergies and nutrition and the like and actually had a clue.
She talked down to me and was quite rude about that fact that Maya didn’t have EoE.
It was so bad that I just quit taking Maya to see her. My reasoning was that Maya didn’t have what they were looking for so there was no reason to keep making the two hour drive.
I was also very unenchanted with our pediatrician who kept having us go see doctors that couldn’t help us and were rude about it. I was actually pretty angry at this point as we had gone through so much to find out so little.
I promptly found a lovely new pediatrician that was actually very close to where we live who was ready and willing to help us get some answers.
Want to keep reading? Part Three is ready!