14 yr.old son diagnosed yesterday

[CarrieG]

My 14 year old son was finally confinrmed diagnosed yeaterday with Wegeners. Im in denial, and Im 100% livid...I cant absorb all I've read, and my head is spinning. I go from wanting to kill someone to being perfectly fine because I dont believe it anyways.

I need to know what his life will be like. Will he even have a quality of life?

[JeanMarie]

Carrie, I am so sorry you son is on the wegs path. There are so many different ways this disease affects us that it is virtually impossible to predict what will happen. But treatments are getting better all the time & more than likely he will have a great quality of life. The best thing you can do for him & yourself is try to make sure he has well trained doctors. Look at the list of specialists on the vasculitis foundation web site.

[Alysia]

Hi Carrie,
I think I can understand some of your shock, fears, helplessness, rage, and so many hard feelings, a mother cant even express but experience, like some madenning pain....
Im sending you big hug and faith that your son will be O.K..
you are not alone in this "battle". you came to the right place. the people here will help you and your son.
please write more. I believe it can help.

[Dirty Don]

Carrie...what JeanMarie said...and...first of all, glad you found this site...sounds as if you'll need it more than your son. Kids are amazingly resilient and powerful...adults, not so much. He needs YOUR support and strength, so one hopes you move from anger and denial quickly enough (they are very natural phases) in order to get him the best help available, preferably WG experienced docs. As you continue to read on here (and please do so as there is much compassion and experience all downloaded onto this one little site), you will find that most of us, even in our elderly stages, continue to do battle with WG and are fairly successful at it. That means, for your son, that he has a very good chance of dealing with this as you and the docs use and teach him the correct protocols for dealing with WG. And, depending on how he deals with the drugs, how severe his case is, and how supportive you are, he has a very good chance of remission...but it takes fortitude, patience, and perseverance...just gotta do it. Best to you both.

[CarrieG]

It's only been since yesterday that I got the call...they wanted more blood and urine from him this morning, so I took him in to do that, but he doesnt even know yet. I dont think I can explain it, and Im waiting till tomorrow when everything is back before telling him with a Doctor present. They have been running tests on him for 3 weeks, since we went to an ENT for his ears and sinuses for the 10000th time.

It's always just been me and him. I'm his only parent, his dad is dead and he never knew him anyway...so it's just me and him and the cat. I work all the time as the Assistant Director of Engineering of a Hosptial (of all places) and I am like a lunitic today. I'm actually at work right now. My son is home recovering from ear tube and adenoid surgery that he had yesterday...thats how we found out about all this. He thinks today's doc visit was just a follow up from surgery yesterday and has NO CLUE that anything more is wrong, and I didnt want to say anything till I knew 100% that there was.

He knows he feels like crap, and does most of the time...but I chalked it up to him being a whiner and Mr. Dramatic. I sit here and think about having to tell him and I am SO DAMN MAD!!!

I know that message boards are a great resource, as I belong to a message board for gastric bypass patients and Ive learned a wealth of knowledge from other patients....difference is, I wasnt/arent sick, it was a choice to go through that. I chose the surgery, I chose the change of lifestyle...he gets no choice. He gets what he gets, like it or not.

I wish it were me...I am a touch chick. I can handle anything, him, not so much. He's spoiled rotten, has an easy life, never has had to face any obsticles as I have always done the fighting for us without him even knowing there was struggle.

Thank you all for support, Im sure I will be on here often to vent....the more into my 40's I get, the more and more rage I seem to have

[Evie22]

CarrieG,
My heart goes out to you and your son, so young at least I was 40 when it happened, but now you know and I am sure you have passed on some of your fighting spirit to your boy, and with all the modern medicines now available he has a better chance than years ago. You need to be as positive as you possible can when giving him the news, and instill in him that you will be there every step of the way to remission. Meanwhile might I suggest that you invest in a punch bag and put it the garage, a most useful thing for venting anger. My thoughts are with you, stay strong.

[Pete]

Hi Carrie,

Glad you found us, sad you had to. I'm confident that your son will lead a near normal life. He'll probably have to make some accommodations depending on what organs were affected and to what degree, but he should be able to do pretty much what he wants in life.

As I recall, Flat Rock is between Detroit and Toledo. That puts you within fairly easy driving distance to Cleveland Clinic where they have several experienced wegs docs. I go there and see Dr. Alexandra Villa Forte. Some of the other forum subscribers see her as well, and the consensus of opinion is that she provides very good care.

[CarrieG]

We know for sure that his lungs are involved, he has lesions on them. Im waiting to hear about his kidneys. Waiting is killing me.
Ive read about the care at Cleveland Clinic and it sounds great, but for now, our family Doc has put together a team at U of M in Ann Arbor to handle his case. If for one second, I dont think he is getting the very best of the best, we will go elsewhere. I work at a hospital, and I have no problems with demanding things from Doctors. When it comes to my kid, as most mothers are, I'm like a mother bear...I will not tolerate any second rate care.

I am still in disbelief, and I've spent my entire day reading about this disease and educating myself for the flood of questions I'm sure he will ask me when we tell him. I have never sugar coated anything with him, and I will stick to the facts...but this just sucks. He knows that with anything he's ever done in life, I've had his back...and I will continue to always support and provide everything he needs to fight this. However, no one has ever had my back and I've never really needed anyone to, till now. That's why I came here..

[pberggren1]

When do you meet with the U of M docs? Do you know what treatment plan they are considering? I hope they are considering Rituximab (rtx) as it is much safer than cyclophosphmide (cytoxan)ctx.

Carrie, I sent you a private message.

[blessed2bamommy]

I'm so sorry you are having to walk this path. It sounds like my daughter's case is similar to your sons. My daughter had sudden onset of chronic ear and sinus infections at the age of 9. (December of 2009) She had her adenoids removed and tubes put in in March of 2010) No antibiotic would take care of the on-going infections. The ENT totally missed this was WG. She continued to deal with ear/sinus stuff until Feb of 2012. She became ill (skin rashes, joint pain and swelling) Ped. sent us to children's hospital and doctor knew right away it was something in vasculitis family. She was admitted to hospital the following Sunday (2/5/12) and official dx came that following week. Return isn't working for some reason?.?.? So we've been battling WG since Feb of 2012. Bethany is doing much better. She's not in remission (though that definition seems to be different depending on who you talk to) She is stable. She's not in any pain. She's on a boat load of meds but she's used to it. Like someone else said, I'm glad you found this board. Everyone here is so great and helpful.