My 16 year old son had a cold and now he is diagnosed with Wegeners

[melhadys]

Almost three months ago my son and I caught a cold. It sucked! Seven days later I was better but his dragged on. I took him to the Doctor and it turns out he had a sinus and ear infection. He was placed on heavy antibiotics (I was nervous it was the first time for that) and told he would feel better in three days…. which passed… and still he was sick. I week later I was watching him be admitted into the "your kids is so sick we don't know what to do floor" of the children's hospital.

He has GPA, Wegner's (dr said he was a Nazi so we don't use that) or Granulamatosis with polyangitis.

Just want to read and connect and ask a ton of questions…. or maybe just know my son is not the only person with this rare disease.. truth is I'm really frightened
Thanks

[Dirty Don]

Welcome melhadys,

Sooo sorry your son has WG...really not fair to the young ones. There are a lot of people on here which includes some other parents of WG kids, and vice versa. Always someone on here for you...ask any and all questions, vent, share, help out...do what you need please. Even good to get on here on one of those sleepless nites! On the good side, your son is young and his body can deal with this, all depending on the severity of WG. I believe you'll find holding him to his protocols will much more difficult than the disease itself...

As for care, do you have a WG specialist, doesn't sound like it if they're still debating the background of the name...sheesh. Anyway, I do hope you have access to one. What kind of drug protocol is he on at this point? What are his symptoms? And on and on...

Best to you and welcome again.

[annekat]

Welcome to the forum. We were all frightened at first, but being here and connecting with others going through the same thing is the best thing you can do. Many of us have recovered from the debilitating period after diagnosis and are living fairly normal lives. People do go into remission for a long time, maybe even indefinitely for some. For most of us, it is manageable. Your son was lucky he was diagnosed so soon after the onset of symptoms. Many of us had to wait years for a dx, because the disease was just mimicking other more common things such as recurring sinus infections and allergies. An ear infection at the onset is common. So anyway, read as much of others' experiences as you can on here, and you and your son won't feel so alone. If he is still in the hospital, he could be out soon, and will go through a period of recovering at home while he is treated. Things will get better little by little. Let us know where you live and maybe people can make suggestions about specialists in or near your area.

Please write as often as you want, and keep us posted on your son's progress.

[melhadys]

Thank you!
He has really serious specialist Drs now. We were tossed into the Wegners drug protocol to save him. Uh.. Retuxanab (sp) ,infusions?… transfusions 3 times …
now 60mg 0f pred, cylo blah blah blah….

Tell me about the disease…. the daily living please. I have a kid to coach and I don't have the skills.

[melhadys]

Oh and he is Deaf…. we are used to fighting something we can see, sorry if I seem so forward

[pberggren1]

Welcome to our family. We are here to help you.

What is your son's name? What is your name?

Did the Wegs take away his hearing? What is the prognosis for his hearing?

Is your son on facebook? I know of a few teens on facebook that have Wegs and there are Wegeners groups on there as well that he could join too for more support and you could join as well. But to be very frank, this support group for Wegs is far better than the facebook ones. That is just my opinion though.

[annekat]

I agree this forum is the best support place, but the Facebook groups are very worthwhile, too, in a different sort of way. Advice still given, but not in as comprehensive a way, and more geared toward friendship, comparing experiences, and socializing with fellow sufferers. We've got all that, too!

[annekat]

The daily living is one day at a time; he will be very fatigued from the meds and the disease both, and must take all the time he needs before he is ready to GRADUALLY get back into the swing of things (return to school, etc.) We learn not to overdo it or make too many plans or commitments, since we don't know how we will feel from one day to the next or whether we will run out of energy before the day is over. Eventually, he will start to feel like his old self again but still must be careful. And of course, if out in public, he needs to take precautions not to catch things from people, since he is immunosuppressed. Frequent hand washing and hand sanitizer are very good things. But many of us, whether ultra fastidious or not, have managed to catch very few if any colds and the like. Catching one might or might not trigger a flare. If it does, it can usually be dealt with easily by an adjustment of one's meds. Since your son has had WG for almost 3 months, you probably already know a lot of this. We'd like to hear how he is doing and if he's shown any improvement since starting treatment.

Many of us have some degree of hearing loss. Some recover most or all of the lost hearing and others may be deaf for life. I am not deaf but do wear aids and expect to indefinitely. There are various causes of the hearing loss, such as permanent nerve damage from an infection or from the Wegs itself, or eustachian tube dysfunction from inflammation and damage in that area, causing conductive loss which may be regained or not.

Keep asking any specific questions you would like to, and also make use of the Search function to see a wealth of information in the archives.

[melhadys]

Wow thanks,

My son haddy has been Deaf since birth. That is no big deal! We fought that battle and now this new battle is so out of my reach. Deafness doesn't make you sick.

Please understand I am new to the terms of this and really tired. His treatment started when his kidney function was at 30%. His has been on so many drugs I can't keep track but his HB went from 6.2 to 9.8. Other labs are better so he is reducing is pred. to 50 mg. He has returned to school but today he was too tired and had a headache.

It is so comforting to know there are people who have this and actually have a community. Thank you for being so patient with me!

Mel

[gilders]

Welcome Mel.
I was a similar age (17)when diagnosed and also have kidney involvement.
The best place to get people's stories of how they're living with WG is to read the welcome/introduction part of thi forum. But I'll tell you a very condensed version of my last 19 years since first dx.
After months of ear infections, cold syptoms and complete fatigue I ended up in hospital. Many tests and a few hospitals my kidneys failed. Fortunately this led to another specialist getting involved who diagnosed WG. My WG got pretty much as bad as it could get, but treatment did begin to work. After approximately 8 months of treatment I returned to work for a few hours and gradually built the hours back up to full time. I eventually had my health almost back to full strength. Considering how severe my initial WG had become, l hope this recovery gives you some hope.
I would like to say that's the end of my story and I'm sure for many WG patients it is. But there's also many, like me, that have relapses. In brief, I have had quite a few relapses and after each relapse I have returned to work for a few hours and slowly built my hours back up. Unfortunately every relapse has knocked me back (especially kidney function) more than I've been able to recover so much so that I had to stop working a few years ago.

Nobody's story is the same with Wg and you can not predict how it will effect you in the future. This is one of the most frustrating things with this condition - you'll always have questions that even the most experienced Dr might not be able to give you 100% definite answers.

[melhadys]

Thank you…

[Alysia]

Hi Mel, welcome.
I understand how scary it is to be a mom to a sick kid. I hope he will soon feel better. RTX is a good med.
this forum is the best and we are all holding your hands on your way. please update us.

[mishb]

Hi Mel and Haddy and welcome to this wonderful place.

I'm so sorry that you have to be here though. :crying:

For someone trying to get their head around all of this, it is a little scary reading everyone's stories. I actually wouldn't go there yet.

Just know that, Haddy is in great hands with his doctors, and with the RTX (Rituximab), he will get better.
He probably wont be as good as he was before getting sick, but he will get there. Stress can cause the symptoms to get worse, so if you or he need to release some frustrations, come on here and give us a yell.:w00t:

A flare - is what happens when the symptoms start coming back, a relapse.
Remission - is when the symptoms appear to be quiet, either with the medication or when you are totally med free.

Do you want to know what he is actually feeling......inside? (this is something I have been thinking about lately)
For me anyway, it feels like you have the flu - with the joint pains, tiredness, blocked nose, stuffed ears, puffy watery red eyes and possibly with a cough that wont go away.....think of it as a flu that the cold and flu tablets wont help, so you always wake up with the same symptoms. He will be very tired and he probably wont be able to do things like he used to - like play sport the same way, or have late nights etc.
You will both get used to the things that he can and can't do and the days when he will just need to sleep.......but it will get better.

Don is correct in saying that being a teenager, the thing harder than WG will be the realization that he needs to continue taking these meds for a long time.
On the prednisone, he wont be able to just stop taking it because that will cause an entire set of new/different problems.

I hope one of the parents comes on here soon to let you know how it is from their perspective.

Just know that you and Haddy and not alone in this and we will help you get through it :hug1:

Questions - ask away :thumbsup:

[Tmp521]

Hi Mel. Let me just get right to the point...I know just how you feel! Ten months ago my 16 yr old daughter had a sinus infection which was very common for her. This time though she ended up in the hospital for nearly 2 weeks. 2 months later she was officially diagnosed with Weg's. Here we are 10 months later and she's on her second round of Rituxiamab. She's was on the taper for steroids but now we're kinda stuck at 5mg (was 60mg) b/c she began flaring again. Being told my daughter has Wegener's was like being thrown in the middle of the ocean and told to find my way to shore! I was totally lost. However, I'll tell you a few things I've learned but keep in mind everyone's experience may be different.
1. Just because she looks fine and acts fine, doesn't mean she is.
2. She has good days and bad days and is worn out easily. Example...I can take her with me to the store, usually about a 2 hr trip of standing and walking and she'll come home and sleep the rest of the day.
3. When she's done with a round of meds, it doesn't mean she's cured or done with that med permanently. We're not dealing with a common cold.
4. Hospital Homebound has been a life saver as far as school is concerned. Teachers come to our home 3 days every week for 3 hours to keep her up on school work. This is something I STRONGLY suggest you look into. When she feels like going to school, she does. Even if it's only to 1 class or for 1 hour.
5. You may tell the doctor about a symptom over and over and all you get is a blank stare and "that's just part of the disease".
After much research I know no one knows how anyone gets this disease but many scientists believe it could be from the bodies reaction to something like chronic strep throat, chicken pox and things of that nature. As for my daughter, she had chicken pox before she was a year old, shingles at age 4, tonsillectomy at 9 due to recurring strep and chronic sinus infections.
There's so much to learn about Weg's yet so little information out there. I say that because most of the info is repetitive and you won't find nearly as much as you would if you were researching something like lupus or cancer.
6. START KEEPING A NOTEBOOK! Write down new symptoms, questions, important information from the doctor and always get a copy of labs. This is so helpful when/if you see a new dr., have to make a trip to the ER, or just need to research or get a better understanding of something the dr has said.
I know it's a lot to take in but all you can do is take it one day at a time. Best of luck to your son and pleases feel free to message me anytime with questions or if you just want to talk. Above all, when you feel like something isn't right and feel like no one is listening, put your foot down and "get in the Dr.s face". You are your child's best and only advocate and you have to make the dr listen and take notice when your gut is telling you something isn't right.
Tara

[Pete]

Great advice, Tara!!

[Dirty Don]

You are NOT being forward...you're being 'necessary' and vital to your son's health! So there! LOL! Daily living for most of us is similar, but, depending on the severity and condition of the patient, conditions vary a lot. Being deaf, I imagine your son's a fighter already, so he's prepared for WG. Actually, for me, daily living isn't that bad at my age, but he's young and active and this will limit him initially. He'll adjust to the lethargic days, overdo the good days, the bad days will be questionably frightening at first...probably more for you than him...and there will be lots of drugs and questions and doc interviews, etc. As he's still in initial stages of treatments, that too becomes a daily facet as the drugs are unavoidable tho most of us would like to be off them and like to whine a lot about them on here! Basically, your son needs a strong understanding and aware support system which allows him to stick to his protocols, helps him understand what's happening to him, and someone to be there when he feels like crap. He doesn't need sorrow or false support or whatever. Honesty and fortitude are the necessary ingredients for coping with this stupid little disease. OK, back to coffee, best to you and your son! You and he will be fine...be patient.

[whatthewhat]

Melhadys,
Welcome to this forum; it's great.

And hang in there- I think you are passed the hardest part.

Our daughter was diagnosed last year when she was 14. I am part of a "secret" Facebook group for moms of weggie kids (almost all teens) that you would be welcome to join. Private message me if you want.

[melhadys]

Wow THANK YOU,
Thank you for being so open and kind as a community.
Tara just what I needed.
Interesting, I remember feeling this when Haddy was identified as deaf at 10 months. I know that sounds silly but it was huge at the time. Now the deaf bit doesn't even enter our thoughts as a problem. I was told he would never read past the third grade level and now he is taking AP classes at his preforming arts school. I thought the hard work would set him up for a typical future. He was happy and blended into the world without a hitch. Crap, never forget to be humble about life.

Tara you mentioned the home school issue…. awesome advice. A social worker at the hospital mentioned that maybe the second week we were there ….I forgot. THANKS for the reminder.

I really just want to throw a tantrum….. I don't want to join any more clubs, third childs death, deaf kid and now WG. My joke has always been you are in the club but you never asked for membership. Truth is if you are in something, community is the only safe place.

So from what I am reading Haddy will not go back to his old passions…

He will get a new normal… he will be sick for a long time… there are folks who get this

Mel

[Debbie C]

Hi Mel, I just wanted to welcome you to our "family". It is very scary at first but everyone has already given you such great advise and it seems his drs. are on top of things that I think he will in time pull though this just fine.I was also thinking about him going to school with immune system so low and kids are always sick, really need to be careful there and keep up with good hygiene (wash hands always after being in public ) Try to rest some yourself,he will need you to be strong and you don't want him to see you worried,stress is a big trigger for a flare. My prayers are with both of you...Take care:hug2:

[annekat]

Mel, I'm sorry I misunderstood about Haddy's deafness, that he'd been deaf for life. Another Wegs symptom is mental confusion, and looking back, I should have seen that's what you meant. I can see how the deafness was a huge deal at the time you found out about it, but since having adjusted to it, there hasn't been much unpredictable or confusing about it the way there is with Wegs. He sounds like a talented young man who WILL reach his new normal (we use that term a lot on here) and will find his way in his chosen field just as he would have without having gotten WG. There are many people on here who continue to work in their careers after their diagnosis and treatment.

[whatthewhat]

This Super Bowl Sunday, I *think* an hour before the pre-game, is a documentary by the NFL that will tell the story of a teenager from Arkansas with WG who is back playing football (&basketball).

I continue to believe, along with the very experienced team of rheumatologists from Children's Hospital Los Angeles that pediatric wegs has some different protocols and progression than adult-onset.

[melhadys]

When is the Super Bowl? haha so out of our world! I want to see it

[whatthewhat]

This isn't my strong point either, LOL, but the Super Bowl is February 2. I think he was (will be?) mentioned during the 49er / Seahawk game today, and a video about him "Nate Carter" can be found on nfl.com

[annekat]

Sheesh, just realized I'm not watching the Seahawks/49ers game. Well, I've lived both places, so I guess either outcome is OK, but I'm here now so guess will root for Seahawks. So that's why the neighborhood is so quiet!

[annekat]

I'm now looking forward to seeing that video or documentary on Nate Carter, AND watching my Seahawks play on Super Bowl Sunday. Nope, I'm not a football fan, but sometimes we make exceptions.

[whatthewhat]

Nate Carter - Together We Make Football - YouTube (http://youtu.be/yXwyc-DBUQw) did that work? Lol

[annekat]

Nate Carter - Together We Make Football - YouTube (http://youtu.be/yXwyc-DBUQw) did that work? Lol Yep, it worked!

[whatthewhat]

Maybe this too - look for Nate Carter if it's the collecrion of films and not just his. Together We Make Football (http://www.togetherwemakefootball.com/contest.html?s=525083013183c73d0f0000d0)