I do warn that this story is heart-wrenching. As a food allergy mother who has seen her child sick, I cannot even compare my story to theirs. The journey they have been on and continue to be on is one that needs everyone's support. Here is their story:
When my son was born he was three weeks and six days early. It was a dry labor and he almost did not make it. He was not breathing and it took (what felt like) forever but was only half a minute or so to get him breathing.We had to stay in the hospital for seven days because the doctors were not sure if he was going to make it. After we got out, my son would try to eat but every time he did, he would cry and his stomach would be rock hard. He would be covered 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 I was told after two or 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 altogether. The next challenge was finding a formula that he was not going to react too. When he was four weeks old, he got his first cold (coughing, fever and vomiting). I took him to the doctor and she said "Babies get sick. It is just a cold and there is nothing we can do but wait it out. Push fluid. He will get better."
Halfway through his fifth year of life I found something that sounded just like him -Eosinophilic Esophagitis (EoE) and Candida. I printed out the information and made an appointment to see his doctor. She agreed that this sounded much like him but that she was not the one that could test for or diagnose such a condition so she would have to refer us to a pediatric Gastroenterologist (G.I.). The G.I. was so rude when I saw her which was not my first encounter with rude doctors as most treated me as though I was insane and making up my sons issues. She gave in and did the testing after a lot of discussion and arguing. Sure enough the results showed that he did have EOE, Gastroesophageal reflux disease (GERD) and Candida. She sent me an email telling me that she was sending some prescriptions to the pharmacy and that she was not going to be my sons G.I. anymore so I would have to find a new one. The medicine for the EOE was called the “budesonide slurry” it was where he would take one vial of budesonide and mix it in a medicine cup with 5 packets of splenda then drink it. He did this twice a day. It had a plethora of side effects and was not helping him. After a year of this I decided to look into other options. I found that eliminating certain food could help but had already taken out all the allergens I could think of so I looked for a test that might help. Through the help of a page I found and now friend on Facebook (Nutrimom) I found a blood draw called A95-E95 and it tested all sorts of different foods and environmental allergens. The results of this were able to help me take even more things out of his diet and after 6 months he had a clean scope (which means that his EOE was under control). With his EOE under control, I thought that he would get better but he did not. He was still getting worse. All of his doctors told me that he may be that kid that is just sick and that I would have to learn to deal with it. We would treat the symptoms but never know the cause. This solution did not sit well with me. I cannot believe that all of my doctors were in agreement that this was what it had come to.
Sadly, the insurance denied covering the treatment as the labs were not supportive enough so the doctor said we would try a 30 day sample program to see if the results could change their minds. The doctor explained that a 30 day sample is usually not enough to do anything and most people do not show improvement until they have been using it for 3 to 6 months but it was our only shot. When we started the treatment sample my son had already been sick for over a month with no real help from the prednisones or antibiotics. The nurse that came to help us administer the treatment could hear him wheezing from across the room. Through the stethoscope he was so loud that she was concerned and his oxygen level was at 93%. She suggested taking him into the doctor after the treatment so that he could get on some stronger medications. An amazing thing happened- something I never thought possible and something the nurse had never seen. By the end of his treatment, he was 100% better!! His oxygen was at 100%, his lungs were clear- he had energy! Had I not been there myself I would not have believed it possible. Had the nurse not been there, the doctors probably would not have believed me. The nurse said that he may go back to being sick in a few hours after all of the medicine absorbed but he didn't. The day before his next treatment, he started to act sick again but once he had the treatment, he was better. The nurse had a client who switched medications and had leftover, unused medication. Since we only had four weeks worth, the nurse asked if I would like it for my son while we wait for insurance to approve it. I said "Yes, please that would be amazing!" So now we have five more weeks worth of medicine which is exciting since I know how slow my insurance is. I used one of the extra weeks worth and it was the day before I use a second extra sample when I got a call, asking how my son is doing and letting me know that they still have not sent in the paperwork to the insurance. I let them know he is doing well and they get suspicious as to why since it is said to be two weeks after stopping. I tell them the truth and I am told that I might have just given the insurance company a reason to say no. Since they took so long to send the information in, the insurance company requires proof of how bad he gets quickly after stopping to see if the medication is truly as needed as we say.
So now, I know I cannot give him anymore of the medicine that I have sitting in my room. The medicine that I know makes him feel 100% well and that I might have also screwed him out of a chance to actually get it approved by the insurance company. With this knowledge, I am left unknowing. All I can do is cry and wait. I have to sit back and watch my son get sick again. With every day that passes, he gets sicker and sicker. By next week he will need to be on prednisone again since the insurance company still has not approved this new treatment. The prednisone will help but nowhere near as much as the treatment and has side effects. I have to tell my son there is nothing else I can do, even though I have four treatments left. What will I do if the insurance company does deny these life-saving medications again?I cannot go back to the way things were but I cannot afford to pay for this treament on my own. My son finally feels well enough to try to make friends and sit near people without fear of hospitalization and I have to tell him that we cannot do the treatment anymore for who knows how long. I am at a loss but I will not give up. I will give the insurance company a couple of weeks to decide and then I will figure out what I have to do next. There is always a way, even if I do not know what it is right now- I will figure it out somehow.
- I am asking his doctor to do a Peer to Peer review with the insurance.
- Second, I am contacting an allergy law firm (they are on the east coast and I have no idea if they will help).
- Third, I am contacting the Immune Deficiency Foundation to see if they have an advocate that will help me get the insurance to pay for this treatment.
|The insurance company that is denying this child |
these necessary treatments is Umpqua Health Alliance.
*I was given permission to share her son's photos