I Am Forced to Watch My Son Be Sick

I wanted to end 2016 with a personal story from a page member who wanted to share to help others. This is her story of what she has and is going through with her son. I am sharing this because our food allergy community learns from sharing with each other. With all of the changes over the years, it's important to remember that we can never give up hope, we can never give up fighting and we can never give up supporting each other.

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:

How is a mother supposed to sit back and watch her child get sick, especially if she has the medicine that will help him?

My son has been sick for the majority of his life (nine years). He gets Bronchitis, Pneumonia, Bronchialitis, Sinusitis, and urinary infections over and over. He is on a schedule of prednisone and antibiotics (on for 10 days, then off for five days,then back on the prednisone for seven more days, then 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). When he is off the prednisone by day five, his oxygen level is at 92/93 percent. His inhaler no longer helps- he is wheezy and he can’t stop coughing. This happens every year. He only has three months out of the year where he does not have these issues and they are during the summer months. After many years of testing, we found multiple things that could be his problem.

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."

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. I continued to take him back to the doctors where she told me the same thing every time. She never called for any tests and just assumed that I was a paranoid first time mother and a burden for her. When my son was 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. But 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. I immediately called the doctor's office- she told me that she just saw him yesterday and had patients that she needed to see that actually required her attention and that the best place for an overly dramatic parent like me was the urgent care center or the emergency room. After hours of waiting, his temperature was 103, his o2, 90-percent. They did not believe that this was accurate so they checked and rechecked. They then ordered a chest x-ray. By this time it was just after 7 P.M. and it was raining harder than I had ever seen before. 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. At 1 A.M. we finally got called back to be seen. He came back positive for Respiratory Syncytial Virus (R.S.V). They checked his oxygen level and found it at 83%. By that point they immediately admitted my son to the pediatric ward of the hospital, hooked him up to oxygen, gave him an I.V. and started running a few more tests. We had to stay at the hospital for 13 days. When we left, 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 threw up every night multiple times but was fine during the day. He had hives on his stomach and face that came up after he ate and lasted for a few hours. The doctors decided that when he was 6 months old that he needed to take benadryl one hour before eating his meals. When he was 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. I was given a list of the derivatives and then I was sent home with no further assistance. When I got home I started going through all of the food that we had. At least 92% of the food in my house 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. For awhile, we had very simple meals of plain cooked meats and noodles/minute rice. Eventually I got better and learned some things to make that were dairy free. It seemed as soon as I got comfortable with him having a dairy allergy he got a new allergy. Every 6 months he would have an anaphylactic reaction to a food that he had previously been okay with.

By the time he was 5 years old, we had done every test I could think of. The doctor was not sure what was wrong with him so she had told me that any test I thought might fit she would run so we did. Years of blood draws, sweat test, x-rays, cat scans- everything came back normal. I was hoping for one of them to come back abnormal; that way, we would have a starting point. We would know what was wrong and could work towards 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 a sick child and not being able to help him. I spent my days tending to my sick son, taking care of my 5 other children and household duties as well as taking online college classes and my nights researching his symptoms. His doctor thought that an E.N.T. might be able to help us so she sent us to see a local one. He asked why we were there, saw my son's chart and stated it looks like I have had a lot of unnecessary testing done on my poor child over a cough. He said that he felt sorry for my son to have a mother like me and was not sure why the state has not come in to take him away yet but he would be putting a call in himself. I told him that the doctors all approved of the testing and that it was not just “a cough”- it was severe, persistent and caused him to turn blue. The E.N.T. said that the only thing he could do is put a scope up his nose to view the inner workings. He looked at my son and told him that there would be no numbing medicine and it was really painful and that I (his mother) was wanting him to go through this suffering for nose reason at all other then I wanted attention. He said he knew he would not find anything in there and that when he found nothing, he would make sure that he did not have to go home with me. I was so upset that I had no words I literally sat there dumbstruck with my mouth open and no words coming out. I picked up my son and walked out of that office never to return.

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.

Over three and a half years they did minimal additional testing. They did a sleep study and found he had severe sleep apnea, so they gave him an adenotonsillectomy. While they did this, they found a few abnormalities in his throat that may also be causing issues but decided not to do anything about them at the time. They did a sinus surgery to help open up his sinuses so that he could breathe better. They inserted a Bravo pH probe to see how bad his GERD actually was (it found that while he is laying down the acid stays in his esophagus for 179 minutes at a time then would go down for 10 minutes and come right back up. During the day it was constantly coming up as well and not just when he ate.). They discussed doing a stomach surgery but I opted out of that at the time as there were many risks. They did a colonoscopy, bronchoscopy, endoscopy, ciliary biopsy, and another sinus surgery. Yet he was STILL getting sick all the time.

I had no idea what to do anymore but knew I would not give up. I knew that we needed an allergist but I would most likely have to pay for it so I started trying to save up when I found an allergist in my town that took state insurance. At the appointment I explained to the doctor (in as much detail as I could recall) all that we had been through. He was impressed at how well I had kept track of all of my sons health problems and all we had been through. He said that he has a list of multiple questions that he usually asks parents and most of them the parents do not know the answer to but I knew them all.  He had asked me if my son had ever been tested for what is called Primary Immunodeficiency (P.I.). I told him that I had no idea what that was and so I was confident that he had not. He explained that there are over 300 different kinds of Primary Immunodeficiency but there were four that were more common than the others so he would test for them. Unfortunately my sons labs all came back in a relatively normal state. His IgG was low but not low enough to classify him out right with the P.I. Hypogammaglobulinemia (hypogamma) and he did not have the labs for any of the other 3. His symptoms all matched with a patient with hypogamma. His labs were almost there so his allergist said that he was confident that my son has a Primary Immunodeficiency - he just does not have the supporting labs so we could not label it as Hypogamma but rather a “working diagnosis.” He explained to me that the way to treat this was to do either I.V.I.G. or SubQ. I told him I had no idea what either of those were or meant. He said the IVIG was when they put in an I.V. with special medicine and that it had to be done once a month at a clinic or hospital for 8 hours. He explained that he did not believe it to be the best option because the way my son would feel was sort of like being on a roller coaster through the month (because he would be sick for about a week after the treatment then he would feel better and better and then start to feel worse and worse and feel horribly sick the last week before his treatment). Where as with the SubQ (subcutaneous) he would have 2 to 3 little needles inserted into his subcutaneous layer of his stomach, done once a week for about an hour at home and was more like a gentle wave. But what was this medicine being injected into him and how would it help when nothing else did? The medicine was IgG. A specialty lab (or labs) takes blood and breaks it down to its finest form. They take out only the IgG of the people who have a good, high immunity and then give that to my son so basically his body is surviving off other people's strong immunity (at least that is how it was explained to me).The doctor also explained that if it was not a P.I. this treatment would not do anything, it will not hurt him to try and it would not help him if it was not so that is how they can determine if it is since the labs were inconclusive.  

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.

He has gotten sick again. Prednisone for 7 days, nebulizer treatment 3 times a day, antibiotics for 10 days. The insurance has, in fact, denied the treatment again. They say it is because his labs do not support the diagnosis but everything else does. We gave them a letter of medical necessity as well as all of the documentation from when he was on the sample program yet they only care about the labs. There are hundreds of different forms of Primary Immunodeficiency and we only have the ability to do lab work on four of them so the others are determined by if the treatment helps (which it did) so why does the insurance not seem to take this into consideration? What will I do now? How should I proceed?

• 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. 

Unfortunately my son has to suffer while I fight the insurance. There is no way to tell how long it will take to get them to do something. Since the treatment will cost about $1000 a week there is no way I could afford to do it myself - I have to get insurance to cover this. It is considered a “life saving treatment” since the longer he goes without it the worse he gets, his body is slowly shutting down while us grownups argue over cost. I will never give up and I will never stop fighting for him no matter what.

For the sake of this boy and this mother, PLEASE share any thoughts, information or advice that may be able to help them fight this. 

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