My son has been sick for the majority of his life - nine years. He gets Bronchitis, Pneumonia, Bronchiolitis, Sinusitis, and urinary infections over and over. He is on prednisone and antibiotics for 10 days, then off for five days and then back on the prednisone for seven more days, off for five days, on for 10 days, off for seven days and then back on both prednisone and antibiotics starting the cycle all over again.
My son was born about four weeks early. It was a dry labor and he almost did not make it. Once we got to go home, eating would cause my son to cry, his stomach would turn rock hard and he would break out in hives.
The doctors said he was allergic to something I was eating so I had to take out all major allergens from my diet and after two to three days, he should get better. He did not get better - in fact he got worse. So doctors decided he was allergic to my milk.
At 4-weeks-old, he got sick (coughing, fever and vomiting). After a doctor’s visit, I was told to push fluids and he would get better. That was it. There was nothing else that could be done for him according to the doctors.
Days passed and he got worse and worse with no help from the doctors. At 8-weeks-old, I took him to get his pictures taken. He was in a little baby tuxedo and was the most adorable little 8-pound baby I had ever seen. As we walked into the store I looked down at him and his lips were blue. I stopped dead in my tracks - he was breathing, but his lips were blue.
It was just after 7 p.m., and was raining harder than I had ever seen before. After hours of waiting in urgent care, the doctors and nurses frantically came into the room and told me that my son had bronchiolitis, was severely dehydrated and his oxygen level was way too low. I would need to then go to the E.R. for him to make it through the night.
He came back positive for Respiratory syncytial virus (R.S.V). They immediately admitted my son to the pediatric ward of the hospital and we had to stay at the hospital for 13 days. He was given a nebulizer and told to take it three times a day for at least a month.
He continued to get sick and seemed to be sick more often than not. He continued to throw up and get hives after eating. At 15-months-old, he was diagnosed with a very severe dairy allergy and I was given strict instructions to take dairy and all 29 derivatives out of his diet.
When I got home I started going through all of the food that we had, at least 92-percent our food had dairy or a derivative in it. And to top it off, I had no idea how to cook. I sat down in the kitchen surrounded by all the food that my son could not eat and cried.
As soon as I got comfortable with him having a dairy allergy, he got a new allergy. Every six months he would have an anaphylactic reaction to a food that he had previously been OK with.
By the time he was 5-years-old we had done every test I could think of. Years of blood draws, sweat tests, x-rays, cat scans - everything came back normal. I was hoping for one of them to come back abnormal so we would know what was wrong and could work toward fixing it. I felt like a horrible parent to be wishing that one of these would come back abnormal, but I was exhausted from having such a sick child and not being able to help him.
I spent my days tending to my sick son, taking care of my five other children and household duties, as well as taking online college classes and spending nights researching his symptoms.
One night, I found something: Eosinophilic Esophagitis (EoE) and Candida. We were referred to a pediatric Gastroenterologist (G.I.), and after a battle to get the testing approved, results came back that had EoE, Gastroesophageal reflux disease (GERD) and Candida.
Although I got his EoE under control, he was still getting worse. A sleep study found he had severe sleep apnea which was followed by a sinus surgery. He went through a colonoscopy, bronchoscopy, endoscopy, ciliary biopsy, and another sinus surgery. Support from doctors was not there, and they all seemed to be in agreement that we were at a dead end.
I had no idea what to do anymore, but knew I would not give up. After saving money, we went to see an allergist. The allergist was confident that my son had a Primary Immunodeficiency.
Sadly, insurance denied covering the treatment recommended, but we were given a 30-day sample to see if the results could change their minds. The doctor was skeptical that 30 days was enough to do anything and that results usually take three to six months. But it was our only shot.
An amazing thing happened, something I never thought possible - by the end of his treatment, he was better. His oxygen was at 100-percent, his lungs were clear, and he had energy! Had I not been there myself, I would not have believed it possible.
Unfortunately, our insurance will not yet cover the treatment. All I can do is cry and wait. I have to sit back and watch my son get sick again. I am at a loss, but I will not give up.
How is a mother supposed to sit back and watch her child get sick, especially if she knows there is medicine that will help him?
He has gotten sick again. Prednisone for seven days, nebulizer treatment three times a day, antibiotics for 10 days. My son has to suffer while I fight the insurance. Since the treatment will cost about $1,000 per week, there is no way I could afford to do it myself so I have to get insurance to cover this. His body is slowly shutting down while us grown-ups argue over cost.
I will never give up and I will never stop fighting for him no matter what.