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CarrieG
05-30-2013, 01:29 AM
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
05-30-2013, 02:19 AM
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
05-30-2013, 03:40 AM
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.. :hug2:
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
05-30-2013, 03:47 AM
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
05-30-2013, 04:56 AM
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 :tongue1:

Evie22
05-30-2013, 05:17 AM
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
05-30-2013, 06:03 AM
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
05-30-2013, 06:25 AM
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
05-30-2013, 06:30 AM
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
05-30-2013, 06:36 AM
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.

Dirty Don
05-30-2013, 07:18 AM
Rage on Carrie, you're obviously a fighter, we're here for ya, your son will learn how to fight...just keep keepin on...best to you.

whatthewhat
05-30-2013, 10:15 AM
Hey Carrie, I am so sorry for your struggle,and that of your son, but I am impressed by your anger :thumbup: since I believe it will be channeled, once the shock has worn off, into energy to tackle this situation. Please do take care of yourself, esp as you are his "everything."

My 14 year old daughter was diagnosed this past March. Pediatric WG/GPA has some different treatment protocols etc than Adult, keep in mind. And 19 heads are better than 18, so no matter how big the medical team is, make sure there is a WG/GPA expert (in Pediatric Rheumatology) at the very least as a consulting physician. There seems to be only the hard way for a WG's patient to find out care has been inadequate (as you guys have glimpsed) so better safe than sorry.

All best wishes, from our house to yours.

annekat
05-30-2013, 10:17 AM
Carrie, welcome, and I understand your shock and anger at this overwhelming news. People have already offered encouragement, and I will echo that your son stands a good chance of getting this under control and having a pretty normal life. Regarding docs, the ones you are working with now, if you like them, can always consult for free with the specialists at the Cleveland Clinic. Check the VF website for info about that.

The best immediate advice I can give you for your peace of mind is to stick with this forum, ask questions, read both current posts and those in the archives, and keep in touch with us about what is currently going on with your son. There are some very knowledgeable people here and they are glad to share. We are here for you.

marylz
05-30-2013, 11:53 AM
Carrie,
I wanted to add my welcome to you as well. I was diagnosed in late January 2013 and am still dealing with all that it means. As a mom, I understand how hard it is for your kid to be sick, but, you and he will get through it, you just have to stay on top of things. If you think your doctor is capable of being clear but hopeful, I would have him/her explain things to him. It may take a few times to get through to him. When they diagnosed me,I was in the hospital and every day my doctors came and spoke to me about the disease and wanted me to understand that it was serious but treatable. They repeated information because one can absorb only so much information at the time. I took notes while and after they spoke to me and also wrote questions when I thought of them to ask next time I saw them. That is something you can do. They made a point of saying that the diagnosis was mind boggling and they were there to answer any and all questions. That was very reassuring to me.
This forum is also reassuring to me. I have learned a lot about various symptoms and how, really, each person is different in the way their wegs presents itself, but there are so many "weggie warriors" here that are incredibly knowledgeable. It really humbles me and makes me feel so fortunate to have found them!
Best of luck and as Don(?) said: rage on! It is good to get it out!
Mary

mishb
05-30-2013, 11:11 PM
Hi Carrie and welcome to you (and your son).

WG is not as rare as the paperwork is saying it is. Just check out the Weggie Map at the top of your screen.
We come from all over the world.
It is only rare because the doctors out there, are in the dark about the symptoms and disease and we have many on this forum who are fighting hard to raise awareness.
Don't believe what you read on Google.
This forum was my life saver - in that I mean, that it helped to ease my mind and took away the stress.

Don't hesistate to ask any questions - someone will have an answer.
Also let your son know that we have many young people on here with WG and when he is feeling better, he may want to drop by.

Speedy health to him

CarrieG
05-31-2013, 12:02 AM
Thank you all so much for your words of encouragement! One of my biggest worries used to be that my son would turn out to be like me...I am hard, kind of cold; I severely lack that filter that most people have when speaking. I am head strong, opinionated and I have a whole lota moxie....I do what I say, I say what I mean, and nothing gets in my way. I hoped for him that he would be softer, more compassionate, more caring....and he is! He is exactly what I hoped...he wears his heart on his sleeve, he is caring, loving; sweet....he is (at his young age) already an award winning artist! He loves to draw and create things. As with any young teen, he has a new girlfriend every other month it seems, and he is completely heartbroken when they break-up. He is a romantic, soft spoken and just a pile of mush.

Now I'm wishing he was like me...a fighter. I am terrified that he won’t have the emotional and mental strength to look at this 'thing' and kick its ass. He and I couldn’t be more different. His motto is, "I can’t"...Mine is "I will". I desperately need for him to have some of that now.

A few years ago, I collapsed at work in a heap on the floor...the pain was unreal. It was my gallbladder. Since I work at the hospital, I went directly into the ER and the Doc said it had to come out. They scheduled me for surgery the very next day, which was a Friday. I was at work Monday morning. I didn’t lay around all weekend recovering either....I happened to be moving that weekend. I was loading and unloading boxes on a truck, and then unpacking all day Saturday and Sunday. I NEED for him to have "that".

Dirty Don
05-31-2013, 12:18 AM
I NEED for him to have "that".

What does HE need? Go that direction, not yours...he will get thru this his way most likely, not yours. Not saying don't be 'you', but do introduce some compassion for his 'view' of this (once YOU allow him to have one)...he needs THAT, and your strength. Hang tough Carrie...this is going to be OK, honest.

annekat
05-31-2013, 01:00 AM
Carrie, you and your son sound like a great team, and you complement each other with your very different personalities. I think it's likely that he will pick up some your headstrong characteristics as he learns to deal with having Wegs. And you may soften up a bit, too, who knows?

I got the feeling in one of your posts you hadn't told him yet.... maybe you have by now. But I was thinking about how one would go about telling a young person something like this. I know he already knows he is sick, and may be relieved, as many of us were, to know the cause. I guess I would start out not by saying the scary name of the disease but by explaining that it is a disorder of the immune system, that it is rare, but that more and more people are being diagnosed, so he is far from alone with it, and of course that docs are getting better and better at treating it and people are doing better than ever at living with it. And there are other people his age who have it, some have been on this forum, and I'm sure there must be some in your general area. Perhaps he could meet some of them. Also, once things are better under control, he should be able to resume all of his activities, the artistic and romantic pursuits. It is not contagious! But he does need to be careful about catching germs from others while using immunosuppressant drugs. I have been in public a lot and NOT caught things, but it is quite possible, and precautions should be taken. But that needn't ruin his social life if he is careful.

We would love to hear from your son here on the forum if he is ever up to it! Though I understand, from his point of view, we are a bunch of oldsters. We do have Rini on here, who I think is in her late teens and somewhere in the midwest; you might check her out on the Wegs map link at top of page or the members list.

Best wishes to you both as you come to terms with this!

CarrieG
05-31-2013, 01:32 AM
Your right...and apparently Im still freaking out. It's easier for me to say "I, I, I" & "me,me,me" because I've lived through so much...I know from expierence that the road he will travel would be easier for him if he had "that". I so badly want to take the hard part of this away from him, and carry as my own...I know I could handle it, and I'm scared he cant. I know it sounds like Im not giving him much credit, but I know him.
I know it doesnt work that way...I'm just a mom thats worried about her kid...he's my baby. I have him (Sam), and I also have a 27 year old son (Alex), that thankfully, is a nurse.

jeriorleans
05-31-2013, 05:51 AM
My son was diagnosed when he was 13. Lung, ear and nose involvement. Although he did lose a lot of hearing and has had to undergo two surgies on his ear, he has been in remission and drug free at age 16 for almost a year now. Its a rough rode, but it gets better.

renidrag
05-31-2013, 06:09 AM
It can take some time but drug free remission is possible, been almost three years for me. The best to you and Sam.
Dale

blessed2bamommy
05-31-2013, 06:49 AM
It can take some time but drug free remission is possible, been almost three years for me. The best to you and Sam.
Dale
This is so encouraging to read. Thanks for sharing.

annekat
05-31-2013, 12:37 PM
Well, that's cool that your son Alex is a nurse! Perhaps he can take some of the weight off you as far as figuring out what Wegs is all about and how to deal with it. If he has the time, that is.

CarrieG
05-31-2013, 11:46 PM
It can take some time but drug free remission is possible, been almost three years for me. The best to you and Sam.
Dale

How long did it take on the drugs to be able to get off of them?

renidrag
06-01-2013, 12:20 AM
Remember, we are all different, I was diagnosed August 14, 2009 and was WG drug free on June 30, 2010. I am 61 yrs old now and still have to deal with fatigue, neuropathy and other aches and pains, however I feel Sam will not have to deal with a lot of things due to his age. I had a lot of years of smoking and being a plumber with all that goes along with it. Youth will be on his side.
Dale

Evie22
06-01-2013, 01:08 AM
I was diagnoised in 1996 and was into remission with 18 months, but caught a flu, and had to go back on meds. for another six months, and since then no meds. at all. So fingers crossed for your son that he will be improving real soon.

me2
06-01-2013, 10:14 AM
I don't want to brag... but no one is doing it for me. I was blessed with WG over thirty years ago. I was near death. 6' tall and 122 lbs going into the hospital. Kidneys failing.
Cytoxan was the only treatment. I did almost two years of daily oral Cytoxan until I had blood in my urine. I then enjoyed twenty years of drug free remission and good basic health.
Now the treatments are even more advanced and there are a LOT more doctors that know how to treat WG.
Your story could end up being even better than mine.

annekat
06-01-2013, 12:39 PM
So true that everyone is different. It sounds like Dale did exceedingly well to be off all drugs in less than a year. That is pretty amazing to me, but shows it is possible. And that Kirk was in remission for 20 years is also very impressive. I feel I have done very well with my Wegs and responded well to the drugs, but I'm still on them after 2 years, though no longer on the original CTX but on the milder MTX instead. I was dx'ed at 58 and am now 60, and I don't know how differently younger people respond to treatment than older ones, or how much of a factor age is. I think you will feel better when you start to see Sam's symptoms improve once he has been on proper treatment for a couple of months. The problem is that many of us do need to stay on the drugs because they are what is keeping the symptoms under control. Take all the encouragement you can from those who have indeed gotten into remission and off the drugs.

Alysia
06-01-2013, 03:35 PM
. I was blessed with WG over thirty years ago. I then enjoyed twenty years of drug free remission and good basic health.
.

wow, this is very impressing and encouraging ! any "tips" how you did it ?

Rini
07-03-2013, 07:09 PM
Carrie, you and your son sound like a great team, and you complement each other with your very different personalities. I think it's likely that he will pick up some your headstrong characteristics as he learns to deal with having Wegs. And you may soften up a bit, too, who knows?

I got the feeling in one of your posts you hadn't told him yet.... maybe you have by now. But I was thinking about how one would go about telling a young person something like this. I know he already knows he is sick, and may be relieved, as many of us were, to know the cause. I guess I would start out not by saying the scary name of the disease but by explaining that it is a disorder of the immune system, that it is rare, but that more and more people are being diagnosed, so he is far from alone with it, and of course that docs are getting better and better at treating it and people are doing better than ever at living with it. And there are other people his age who have it, some have been on this forum, and I'm sure there must be some in your general area. Perhaps he could meet some of them. Also, once things are better under control, he should be able to resume all of his activities, the artistic and romantic pursuits. It is not contagious! But he does need to be careful about catching germs from others while using immunosuppressant drugs. I have been in public a lot and NOT caught things, but it is quite possible, and precautions should be taken. But that needn't ruin his social life if he is careful.

We would love to hear from your son here on the forum if he is ever up to it! Though I understand, from his point of view, we are a bunch of oldsters. We do have Rini on here, who I think is in her late teens and somewhere in the midwest; you might check her out on the Wegs map link at top of page or the members list.

Best wishes to you both as you come to terms with this!

Ya im sorry I have been off. Doing college :D The hardest part is rapping the idea around my brain. Getting diagnosed can seem bad but It was something I fought for. Now that you know what it is you can handle it better. Once all the body symptoms quite down and I got used to my new body (it really is like mutating), It is just hard to digest and take in the changes. This really just makes people stronger from all the people I have talked to on this forum. Climbing mount Everest or just walking out of the hospital to a plain to Mexico followed by college. This ordeal is often the hardest for the people on the outside who are unable to just put it all back to the old way. I have found a lot of younger people in the US tend to run on facebook? I really hope the diagnosis leads to the right drug and he starts feeling better quickly!

Rini
07-03-2013, 07:12 PM
wow, this is very impressing and encouraging ! any "tips" how you did it ?

I second this!!!

annekat
07-04-2013, 01:22 AM
Glad to see you on again, Rini! Going to school and having WG at the same time would eat up a huge amount of your time. And having a life, too, for that matter! There's been another thread on here recently where Dale and Kirk talk about their long drug-free remissions... I forget the name of it, though. Not sure about any "tips", though.... maybe they were just lucky.... but I do think they were both initially treated with cyclophosphamide (CTX, Cytoxan). Dale is still in remission, but I believe Kirk (me2) eventually relapsed and is on RTX now.

Carrie, I also hope your son is doing well, and we'd be glad to hear about his progress!

cerulean22
07-13-2013, 07:45 AM
Carrie you need to stay strong! As a son who got diagnosed at 22 my parents were my rocks. I still doubt if ill ever be able to do anything with my life but i know i can. You just have to stay positive for your son you are all he has. I am so sorry this is affecting your family too. its tough but things get better. I hope everything goes well! Just stay strong for him, you have no idea whats going through our heads as people who are actually affected and feel it everyday.

jenniofdallas1
12-18-2013, 01:30 PM
Carrie, my 14 year old son was just recently diagnosed with Wegeners. That's how I found you I went to google and typed in 14 year old son diagnosed with wegeners. I don't think I would have found this forum otherwise. I think we have alot in common and would like to know how he is progressing. We have just started plasma pheresis, prednasone, and rutiximab. I am on Facebook and here. Jennifer Burns Christopher on FB

annekat
12-18-2013, 02:04 PM
Welcome to the forum, Jennifer, and I'm so sorry for your reason for needing to be here. We would be glad to hear whatever you would like to share about your son. We have a New Member Introductions section which you can access from the main forum page. We have had people as young as your son on here who have ended up recovering nicely. We also have Rini, who posted above, who was also in her teens when diagnosed, and I think is doing pretty well. Best wishes for his recovery and getting back to a normal life for a teen. It must be a hard time for you all to go through, but chances are it will get a lot better. Here on the forum, you will feel less alone. I don't know that we have heard from Carrie for awhile, but you can always send her a private message, or hopefully she will get notification of this reply to her thread.

whatthewhat
12-18-2013, 02:33 PM
Hi - I just sent you a message on Facebook, JBC about moms of weggies.

drz
06-06-2014, 05:04 AM
I'm so sorry that your son is diagnosed. Well don't worry there are so many solutions of this if he really is.

i don't think this type of comment is helpful. What do you mean??? :confused1: "if he really is"? "Don't Worry!"

There is treatment for Wegs but NO solutions and no one is NOT going to worry about such a diagnosis. Also you are replying to a post several months old and that member has not been active here for several months.

Alysia
06-06-2014, 05:11 AM
i don't think this type of comment is helpful. What do you mean??? :confused1: "if he really is"? "Don't Worry!"

There is treatment for Wegs but NO solutions and no one is NOT going to worry about such a diagnosis. Also you are replying to a post several months old and that member has not been active here for several months.

drz, this man is not a weggie. I wrote to vdub. I hope he will kick him out soon.

annekat
06-06-2014, 06:41 AM
How dare he intrude on our forum like this. Obviously he knows nothing about Wegs, nor does he really care about it or us. It is all posturing, and he's not doing a very good job of it, either.

BookNut
06-06-2014, 10:25 AM
I have read a few other posts and comments from him...and found many of them a little hard to interpret. Could it be a language issue? Could it be that english is a second language, and hence some awkward wording? By using the word solutions, maybe he means treatments, not a cure. I am just not sure, because his use of English seems a bit tenuous. And some folks are not good at expressing themselves. On the other hand ... he might just be trying to create some mayhem. When you read the comments on web pages that are unmoderated open forums, the comments are enough to make your hair stand on end. None of us (even us "honorary Weggies") need that kind of discussion. We need supportive members. I will be interested to see what happens here.

annekat
06-06-2014, 10:41 AM
I don't know, Jacquie, he might or might not be a native English speaker, but he won't say anything about himself or his experience with Wegener's, and his reply to the parent of the 14 year old was very vague and did not seem like it came from someone who knows Wegs at all. It seemed like he was trying to make himself appear genuine by replying to a post. I think the last straw was on the post Alysia pointed out, where he was asking for "suggestions", and it turned out he was directly pointing us to an ad for a product that has to do with gastric bypass but nothing to do with Wegs. I think if he was genuine, he'd be asking for suggestions about dealing with Wegs, either for himself or someone he knows who has it. He never mentions Wegs in his posts at all. I think we've reached the conclusion he isn't genuine, is trying to sell something, and is an impostor. I guess it will be a little embarrassing if we are wrong, but I doubt it.

BookNut
06-06-2014, 10:54 AM
Ahhh.... I missed the part about suggestions. That certainly DOES sound like an attempt to perpetrate a scam on this serious private forum. The poor language structure actually does mimic the kind of scam emails that we all get and consign to our junk mailboxes every day. THAT is certainly something that should be nipped in the bud immediately! Thanks for pointing out the "suggestions" post. Oh, the tragedy of the librarian who doesn't read the whole thing!!

LisaT
06-06-2014, 05:25 PM
Just realized something... He must have posted on this particular thread because he did a search for gastric bypass... This boy's mom mentioned her gastric bypass surgery in one of her earlier posts on this thread. So he's definitely here for something that has nothing to do with Wegs or the rest of us. Obnoxious.

does anyone know how this family is doing? As usual I started reading the thread thinking it was new information because it popped up first under what's new, and now I'd really like to know whether he's okay...

Alysia
06-07-2014, 01:46 AM
I have read a few other posts and comments from him...and found many of them a little hard to interpret. Could it be a language issue? Could it be that english is a second language, and hence some awkward wording? By using the word solutions, maybe he means treatments, not a cure. I am just not sure, because his use of English seems a bit tenuous. And some folks are not good at expressing themselves. On the other hand ... he might just be trying to create some mayhem. When you read the comments on web pages that are unmoderated open forums, the comments are enough to make your hair stand on end. None of us (even us "honorary Weggies") need that kind of discussion. We need supportive members. I will be interested to see what happens here.

I reported yesterday to vdub, and drz wrote to andrew, and I wrote today again to andrew.
the man is an ugly trol :predrage:
I am waiting for the moment that they will kick him out, better with a kick in his *** :predrage:

annekat
06-07-2014, 02:18 AM
Good sleuthing, Lisa. It is a shame that this thread about the boy with WG has become polluted by this guy's shenanigans. I, too, wonder how the boy and his family are doing. I wish them the best.

LisaT
06-07-2014, 02:56 AM
Sure hope he's okay. It must be very difficult as a parent to see your child so sick...

Jayne 14
06-07-2014, 11:14 AM
I'd like to wish the 14 year old all the luck too
This is the perfect place to get help / advice
Has really helped me : ignore the the nasty hacker : he sucks


Sent from my iPad using Tapatalk

BarbW
06-07-2014, 02:26 PM
I teach high school and those with diseases do manage.
Get a 504 if he has special medical needs.
A 504 will follow him to college. An IEP won't.
These people here are great help.

Alysia
06-07-2014, 05:01 PM
just to put a warning in this thread as well: a troll was writing here trying to sell something. he was kicked out and his posts had deleted. but if anyone on this thread got any PM from Danny crowford, be careful from this nasty troll.

daystarr8
10-07-2014, 06:07 PM
Carrie G. I was diagnosed at 9 yrs old I'm 44 now. I was so ill my kidneys we bleeding so bad. My upper respiratory was hit so hard my hearing is 65% loss but I had good doctors who made a lot of guesses and I'm here. Aside from some serious relapses I've had a wonderful life. My mother and father aloud me to enjoy life and we stayed positive and never missed medication or anything fun in life. Anything is possible. I work full time as a cardiac sonographer and have my own business on the side. Don't let this disease cripple you. Fight it!!! Win it!!

maria garcia
10-15-2014, 04:02 PM
Has anyone kept in touch with CarrieG , her son diagnosed with Wegners. I see she never wrote again! im wondering how her son is doing?

maria garcia
10-15-2014, 04:04 PM
Has anyone kept in touch with CarrieG? She never wrote again! I wonder how her son is doing.