My son Nick who will be 4 years old in July was diagnosed with food allergies/in-sensitivities as well as Periventricular Leukomalacia, otherwise considered Cerebral Palsy. He is allergic to dairy, peanuts, tree-nuts, soy, wheat, strawberries, avocado, coconut, and eggs (until recently). Nick was born full-term by emergency c-section and weighed only 4 lb 6 oz. No explanation other than I was "old." I was 47 years old when Nick was born.
I pumped breast-milk for Nick for the first 6 weeks until my supply ran dry. Nick never could "latch-on" properly so I provided what I could for as long as I could. At that time we switched to Nestle baby formula. Even-though Nick had always had the vomiting issues it seemed as if they just got worse. The pediatrician at the time said it was "colic" and that the rash he had developed all over his head was "cradle cap." He was to young to have allergies. I had no reason to think otherwise as I had heard of these terms before and it seemed to make sense. He would outgrow this, eventually or so I thought.
In the months that followed Nick did not get better. He cried, a lot. Vomiting was a daily event and the rash never went away, it was only manageable with olive oil (Dr. Sears). I also started to smell acid after the vomiting and the crying was from pain now. They say you get to know your child's cry's and know if they cry because they are hungry, tired, or in pain. I only knew the cry's for pain and more pain. I diagnosed Nick's reflux and insisted on medication to help reduce the acid. When one medication didn't work I insisted on another until we had some relief. We changed formulas as well to Alimentum. They, whoever they are, say babies don't come with manuals. I disagree as I had the best manual of all, my neonatal/pediatric nursing manual from school. I dusted that bad boy off and proceeded to figure out what was wrong with my child one symptom at a time since the pediatrician was not listening to my concerns.
Nick seemed to be doing better as he got older. He was gaining weight. I would let him sleep on my chest at night while I was propped up on pillows in order to help reduce reflux issues. He was so small and with all the problems we had been having I was not comfortable putting him in his crib that was just down the hall but felt like he was in the next state. I needed to hear and feel him breathing. By the time he was a year old I started changing the formula over to cow's milk. Just as I was about to make the final change he started having the vomiting again and the rash was back. This time inside his elbows and behind his knees. In addition, he had not been following his developmental milestones the way I thought he should have. After we returned home from a couple of summer trips my husband and I went back to the pediatricians office, this time armed with a plan, to get appointments/referrals to a gastroenterologist and a neurologist. I had my suspicions that Nick had CP and could only guess what was causing the reflux.
The GI doctor told us that Nick did not have colic as this is more of a catch-all phrase for "I don't know what's wrong with your child." She sent us to an allergist and told us to go back on the Alimentum formula. We stopped introducing baby foods as well. The neurologist scheduled an MRI. The results were food allergies/insensitivities and periventricular leukomalacia (PVL) - in short, an ischemic brain injury, mostly in premature infants and/or low birth weight babies that can lead to CP. The rast, scratch, and patch tests all came up positive for allergies/insensitivities to dairy, peanuts, tree-nuts, soy, wheat, and eggs. We were given a prescription for an epi-pen and what I call the gold standard for reflux, Nexium. Now I knew I wasn't a crazy mom anymore and I certainly stopped doubting myself as a nurse. It's amazing what a lack of sleep and proper nutrition can do to a person. Now we could go forward...or so I thought.
After 1 year of age Nick was not growing as fast as he should have been. We were always off the scale but we couldn't seem to catch up. He is still below the 3rd percentile but he is growing on his own scale. He drinks a special formula that we receive through our insurance, called Elecare. It contains all the nutrients that he needs if he can drink 30 oz/day at 30 calories/oz. Nick averages about 21 oz/day. We continue to struggle with foods. Our issues now are trying to get enough calories with the limited foods that are available as well as his issues with chewing and swallowing. Granted since Nick was first diagnosed, until now, there has been a tremendous amount of new products out on the market and they have been made available in a lot more stores. At first I had to cook all of Nick's foods for him. Traveling was difficult because you had to bring all the foods with you. I won't say that things are better...but they aren't getting worse.
So if the recipes and resources I find over time can help someone else like Nick, then I have done my job in paying it forward. It has been an extremely difficult road cooking and finding foods that are nutritious, tasty and easy to prepare but I hope that this blog can help provide you with some interesting and delicious meal ideas for anyone that may be having issues with food allergies/insensitivities.
Buon Appetitio!
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