Wednesday, May 26, 2010

Adam's Story

I've been asked several times to share Adam's story about how we discovered he had food allergies. Wanting to include this in the book I'm writing, I've decided to finally attack this monster of a task. One would think I have everything recorded, and I do, just not all in the same place. So here goes nothing...

Adam was born on August 28. 2008 by c-section. The first 24 hours after his birth nurses took care of him for the majority of the time. I was too drugged with pain killers to care for him by myself. Jason was home with Owen.

The second night I was in the hospital, Adam roomed with me. This is when I first noticed he was different. Adam was up EVERY hour, cranky and supposedly hungry. He would have diarrhea bowel movements. I specifically remember a nurse saying, "Looks like he might have a milk allergy."

The first two weeks of Adam's life I slept on the couch downstairs (because of the c-section). Adam slept in a bassinet in the living room. It became apparent very quickly that something was wrong. He would grunt in pain ALL night long. During the day he constantly had to be held and was VERY irritable. Adam would arch backward and become as stiff as a board. Nothing could help him resume a regular position until he was finished arching. His face began to break out in a rash and then his body. Every bowel movement he had was a blow out.

After two and a half weeks of holding Adam upright on the couch all night long to stop the grunting and arching we took him to the doctor's. His stool was tested and was positive for blood. Adam's formula was switched to Similac Alimentum due to a milk protein allergy. He was prescribed Axid for supposed reflux which was determined based on his constant arching.

Life became a little more tolerable. Adam took an hour to take a bottle. He lived in his swing, which was the only place he would sleep well. Still the arching continued along with irritability, discomfort, etc...

At about 4 months Adam started solid foods. He began to digress, vomiting on a regular basis. Adam was constantly irritable. We found ourselves on the couch again holding him upright all night. He rarely slept unless he was in his swing. We returned to the doctor's office.

Adam was diagnosed with a severe milk protein and switched to a prescription formula called Elecare. His reflux medication was also switched to adult Prevacid. The doctor decided to have an x-ray done of Adam's digestive system as he drank this white powdery stuff. I don't remember the name of the test. It was discovered that Adam had a Hiatal Hernia. We were referred to a pediatric gastric specialist in Syracuse.

Meanwhile, Adam was taken off of all solid foods. Once removed from his diet he began to improve. A pH probe test was done on February 5, 2009. While taking medication his reflux levels were normal. Although his dosage of Prevacid was increased to 14.5 mg per day because Adam was still doing very poorly. It was the day we received results from the pH probe test that the gastro specialist saw the arching and stiffening we had been talking about for so long. His reply, "That's not a gastro problem, that's neurological!"

Adam was sent for an EEG and CAT Scan. The initial thought was that he may have Cerebral Palsy or was having mini seizures. All tests were completed by the end of February. All results came back normal. With no questions answered still, our pediatrician decided to press forward. He always jokes that Adam has caused some of his grey hairs.

Adam was referred to an allergy specialist next. On May 4, 2009, at only 8 months old Adam received his first round of skin pricking tests. The results were overwhelming, showing that he was allergic to 30 out of 35 foods tested. Retesting was ordered. Previous to this point our pediatrician had asked us to introduce solid foods at 4 months and again at 6 months. Each time the experiments had gone horribly wrong. After viewing the results of the allergy testing, our pediatrician suggested we try again, using the results from the tests. The results showed Adam could have cantaloupe, watermelon, peaches, chicken, rice, and bananas. The experiment was successful and Adam could finally eat solid foods, if only 5 items.

Due to all of the medical struggles Adam had been enduring, he wasn't reaching his physical milestones. Our pediatrician had no other choice but to call Early Intervention to have him evaluated by physical and occupational specialists. Adam's evaluation took place on May 1, 2009. He qualified for occupational therapy due to his inability to eat solid foods and meet physical milestone markers.

Our pediatrician and gastro specialist decided to refer Adam to have a clinical feeding/swallowing evaluation performed by the CDU unit. Their thinking was that perhaps Adam's difficulties eating were caused by something working incorrectly as he tried to eat and swallow his foods. The testing was performed on June 29, 2009. Results were negative. Everything was normal.

Adam's second round of allergy skin testing was performed July 23, 2009 only to determine that all results were inaccurate due to Adam's age. All foods must be tested through trial and error.

After receiving results of first allergy testing and clinical feeding/swallowing studies, our gastro specialist decided it best to perform a colonoscopy and endoscopy on Adam. Results showed negative for every biopsy they took including celiac disease. The hiatal hernia was gone and there were no signs of reflux.

At this point we were pretty hopeless at finding the cause for all of Adam's struggles. We knew he had food allergies but there were SO MANY and they appeared to be worsening. Adam was taken off all of his reflux medication because there was no need for it. He remained on his Elecare formula. At home life was rough. Adam was almost a year old. He would not sleep through the night and was up at least twice a night. We were slowly introducing new foods, but with the trial and error method, it was a painful process. By 1 year old we knew Adam was allergic to apples, oranges, berries of all kinds, milk, Casein, eggs, oats, buckwheat, wheat, peanuts, soy, string beans, carrots, celery, peas, and sweet potatoes. Adam was NOT allergic to rice, corn, chicken, turkey, bananas, cantaloupes, plums, grapes, and potatoes. Our pediatrician had given us Epi-pens and Adam was already using Benedryl on a regular basis. The arching episodes had subsided, but we were still taking turns holding Adam upright almost every night on the couch for at least half of the night. Most likely this was caused by the reactions he was having while trying new foods.

December 1, 2009, Adam had his 15 month well baby visit. Life was still much less than acceptable. Adam's allergies were worsening. There were SO many of them. Just a few weeks before this visit we had been speaking with our pediatrician who had brought up Adam's case with a colleague. His colleague had mentioned that Adam may have Angioedema. If so, it would explain why Adam has so many allergies and where they came from. A simple blood test would determine results. Adam had the blood test done. It came back negative.

At this well baby visit we were all discouraged. Our pediatrician decided it was time to send Adam to Boston to meet with some of the best specialists in the world. Our appointment was scheduled for January 6, 2010.

On December 18, 2009, Adam had an appointment with a new allergist, a pediatric specialist. He received skin testing for 33 foods. Results were determined incorrect by the allergist. Our pediatrician, along with Jason and I were becoming very frustrated. If Adam had all of these allergies, why weren't they showing up when he was tested?

Adam and I made the trek to Boston alone. We had a foster baby at the time that couldn't leave the state so Jason stayed home with Owen and the baby. Our appointment was in the morning. We met with a wonderful doctor. She ordered blood tests to be done immediately. Another appointment was set up with her later that afternoon, along with an appointment with a dietitian.

After reviewing the blood test results that were in, along with all of the records that had been sent from NY, the doctor determined that Adam's only diagnoses was food allergies and nothing else. They are a different type of food allergies, which is why the allergy testing had been incorrect. Most of Adam's allergy attacks are internal where they can't be seen. The swelling occurs on the inside of his body, not above the skin, except for in some cases. There are foods that cause Adam to develop hives and diarrhea, but others only attack him internally, hence the arching and intense pain that we couldn't understand, causing so much irritability. His vomiting reactions can be compared to someone going into anaphalactic shock. In fact they are our warning signs. All of the doctors from the gastro unit in Boston studied Adam's chart. We met with two doctors. They assured us that they had seen several cases just like Adam's. They have no explanation as to why these cases are increasing in number, but they are. We did receive a few treatment suggestions, but the only way to avoid reactions is to avoid the foods entirely.

I find this hilarious and quite annoying since the only way we can discover Adam is allergic to a new food is if we give it to him. As you can see from the side of this blog, we've had to deal with many allergic reactions since. Fortunately with the Elecare Prescription formula that Adam will be on for years to come, along with the foods he can eat, he is thriving and doing extremely well. His fine motor skills and eating skills are about 6 months behind, but we're gaining slowly. Adam was able to walk at 15 months and talks all the time! Most often he is a happy, go lucky, toddler, until he has a reaction. That's when everything changes.

Adam currently takes allergy medication every night before bed. At 16 months he finally was able to stay in his own bed all night long without us holding him upright on the couch. He still wakes up at least once a night for a bottle, but that's usually at 5:30 AM. He goes to bed around 8 PM, so I'm not going to complain.

At times I feel like we live in a bubble, trying to keep Adam safe, but life is good. I have over 75 allergy friendly meals that our family can eat together for dinner. I now have almost 200 recipes total if you include snacks and treats. The doctors in Boston confirmed what we already thought; Adam will most likely never grow out of these allergies. So, finding peace of mind in a final diagnoses and explanation, we have accepted our lot and are really trying to make life as FUN as possible. It's taken a lot of work, but I can honestly say we're happy!

As time goes on, it appears that Adam's allergies are worsening. His milk allergy has gone from only reactions from ingestion to reactions of touch. Adam has almost gone into Anaphalactic Shock 3 times in the last six months. His face has swollen to twice the size, especially his eyes and lips. We have been to the ER once.

Wow! So that's the story. Obviously it needs lots of revisions and probably a million explanations and definitions, but there you have it. Please feel free to ask questions as you comment, because I really want to make sure this makes sense to all who read it!

Still having fun with food allergies!

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