15 year old diagnosed.

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.

As long as you keep him on a healthy, balanced diet, there's little harm, but you don't want to get into the non-medical, unproven diets that are often found in books or the internet and billed as miracle wonder treatments.

Wegners is much, much to serious to go outside of normal, approved, safe medical practices. Especially, when the patient is your son and not you -- he has so much more of his life ahead of him, so I wouldn't do anything without doctor approval. And, when I say, doctor approval, I mean a real AMA doctor.

I watched a very bright 20 year old cousin mine slowly die over the course of 4 years, because his parents were sure they could cure his problem with proper diet from books they read or stuff they found on the internet. If they had simply gone to a doctor, got the proper drugs and the proper care, he would be alive today. I know this because his mother got the same parasite while in the far east about 2 years after he died. By that time, she had learned her lesson and flew back to the US where she went to a real doctor and was cured in a few weeks. I don't know how she lives with herself knowing that her special diets likely killed her son.

So anyway, healthy diet yes, but with doctor approval. Fad diets or wonder miracle diets, absolutely not.

Thank you for your response vdub. I would absolutely be skeptical of those kind of diets as well especially having experienced what you did with your cousin.

I see no harm in a healthy and balanced diet. And I agree that medicine has its place. My son has very good doctors that are experienced with Wegeners but it is my job as his mother to make sure what he is consuming is not harming him further and that I am doing everything possible to help in his recovery.

I posted my experience with choosing a healthy diet for my son for anyone out there who is looking for additional options to take more control over their Wegeners and not just count on the medications alone. Again, I am not advising to replace medication with a “miracle diet”. I am simply stating that I have personally seen the huge benefits to choosing more fruits and vegetables and cutting out foods that cause inflammation, in conjunction with the medication, to drastically improve his condition.

I just know that when my son was so sick in the hospital, I was desperate for anything that could help and diet is such an important part of the healing process that very few talk about. There are numerous studies out there to back this up if anyone is interested, it is very easy to find online. As it helped us so much, I felt I needed to put it out there.

Wow. Super Mom! Thanks for the info and I'm sorry your son and your family had to endure such an ordeal.

If I kept on eating meat I wouldn't have survived. But eliminating pesticides and dirty water also helped a lot.
Juicing is great but I try to keep in the green realm, just enough carrot to make the kale palatable. Sugar increases inflammation (an cancer).

When I quit meat I thought I was going to die. Tofu tasted like paper. At 8 months - slightly food like. By 2 years I enjoyed in stir fry. Takes time...
Found a great vegetarian food delivery here in Asheville. It's awesome. They do vegan too but I need some organic dairy here and there.

https://cronometer.com/

Check out Cronometer. I tracked all my food for one week. I wanted to see exactly what my nutriton intake looked like. It was really helpful.
It tells you exactly what your getting. All I had to do was enter the food. Most everything was already in their system w/ full profiles.

Prayers to your son.

T

Thanks Tom! Great advise on the juicing. I can see how you could get a lot of sugar intake if not careful.
The cronometer is awesome. I will definitely be playing around with that as we are adjusting our diet.

All the best to you!

Welcome to the forum WCW. Such a scary journey for your son & you. Thanks God he was diagnonsed and treated eventually.
There are couple of mothers to kids with wg around here..
I heard lately from a weggie friend on facebook, she is 60 yo or so, that she has wg since she was 13 yo. She is doing great.

Sending prayers for your son & you.
@andrew maybe it can be useful to open subforum to pediatric wg ? @whatthewhat what do you think ?

Welcome to the forum, thank you for sharing your son's story. I am really glad that things are going well for him.

Welcome to the forum. I think diet is very impotrant to overall health but certain precautions must be observed such as not stimulating his malfunctioning immune system too much with some foods and using anti-inflammatory ones whenever possible. Avoiding starch and sugar will help counteract the potential of prednisone causing hgh blood sugar and diabetes-like symptoms. I've been anemic over the last year or so and have found out it was caused by inflammation of the esophagus due to acid reflux and the tendency of prednisone to cause such problems. So I've been taking priolosec and eating a lot of protein, initially red meat but now gravitating toward other proteins, and plenty of leafy green and other veggies and foods known to supply iron. The esophagus is healing and I'm now back on track with my iron content in my blood. Everyone is different, and it sounds like you are doing a good job with your son and not discounting the importance of the standard WG drugs that have been found to be the quickest and most effective way to slow down and eventually stop disease activity. Best of luck, and let us know how things go!