Hello, my 15 year old son was diagnosed 6 months ago. His story begins just like many others with having an ear infection which would not go away with many treatments of antibiotics over a three month period. As time went on, he had other symptoms of fatigue, stomach aches, muscle/joint soreness that moved throughout his body. He eventually had tubes put in his ears but the other symptoms increased along with extreme eye redness which was diagnosed as pink eye.

I wish there was more information out there to all the ENT’s. I would like to think that if a patient of a ENT came in with no history of ear infections, not responding to antibiotics, and having other side effects, it may trigger a thought of involving other specialists. I keep hearing more and more stories of all this starting with sinus problems and the ENT specialist should be aware of this disorder so it can be caught a lot sooner.

After four months of deterioration and on and off again prednisone treatments, his physician was baffled and we were at our breaking point trying to find specialists to help us when he woke up one morning having pain in his chest to the point he could not breath normal. We took him to the ER where they found a blood clot in his leg which wasn’t detected earlier because he has a bypass vein which allowed blood flow and didn’t cause swelling that you would normally get. He also had pulmonary embolisms and his kidneys were failing (blood tests only one week earlier showed no signs of kidney problems).

He was admitted to ICU where over the next 48 hours his kidneys deteriorated rapidly. They biopsied the kidney where the diagnosis of GPA was finally made a week later. During that time and over the following few weeks he went through around 10 treatments of plasma pheresis and dialysis. He also had one treatment of Cytoxin which I was very hesitant on and agreed to only one very small dose. Additionally, he received the full series of Rituxin along with high doses of prednisone. We learned the clot in his lungs and leg was contributed to the kidney failure and not the GPA. This was a very aggressive treatment plan as his doctors advised, “when it comes to the kidneys, you don’t mess around”.

After three weeks in ICU, he had recovered amazingly and we were able to go home. He was completely off of dialysis and taking 60mg prednisone along with an ace inhibitor and Warfarin.

Six months later, he is down to 5mg of prednisone, the ace inhibitor, and 50mg Imuran. They had him on Cell Cept and Bactrim as a maintenance but he did not handle it well as his bone marrow depleted too much and that is when we switched to Imuran. His labs continue to improve with everything back into the normal range with some slight spilling of blood and protein in the urine.

I have heard stories such as mine with many different ailments and always thought, “That could never happen to us” as we have always been so healthy. My son had never been to the Dr. for being sick even when he was little. He had never had ear infections and we are very active and ate a somewhat healthy diet.

I wanted to speak to diet as I have read through many of these stories and treatments and there are very few times that diet has been mentioned. During his first few days in the hospital, he was so sick and the food the hospital was giving him had very little nutrition. At that point, I began cooking all his meals for him and had him on a strict renal diet which we saw a huge improvement in recovery in just a few days. It is really unfortunate that diet is not one of the main treatment plans doctors use as food is one of the most powerful drugs out there and it comes with very little or no side effects. I am very grateful for the drug treatments they gave him as he wouldn’t have made it without them, however I know a large part of his successful recovery had to do with his change in diet.

I have continued him on a healthy diet plan which basically consists of no dairy, lots of fresh raw veggies and fruits and very little meat protein. We try to get all our protein from plants and it has been an adjustment as we have always been more of a meat and potatoes family. I recently purchased a juicer, which has been amazing and an easy way to boost up the veggie and fruit intake. After only a week of juicing twice a day, his inflammation levels not only went down into the normal range, but they are on the “low” end.

I am confident we have found a plan that works well for him with diet being the main focus of treatment. Of course we didn’t rule out the other drugs as he is still on some of them but the goal is to be able to reduce and replace them with a healthy lifestyle. I will end with a thought for all of you that haven’t given much thought to diet as part of a treatment plan. It doesn’t take much to incorporate those amazing anti-inflammatory foods into your diet but it can make a huge difference in recovery and there is no risk in giving it a try.