Help me please !

[Kaysphotography]

So here's my story on February 13th 2013 my 2 year 2 month old son was watching tv when he starting coughing so bad I thought he was choking on something but he wasn't eating so i thought it was his spit or something but he couldn't gethis breath back he started turning blue so he got rushed to the hospital and put on air , I was told he had croup and he was hospitalized for over a week befor they sent him home , but it never got better i took him back and they said he has asthma and he was put on puffers , few weeks later he was just getting sicker he wouldn't eat and started coughing up blood , was told by ER doctor the coughing was hurting his lungs , then he started getting nose bleeds so back I went , he was admitted after yelling of pains in his head in the waiting room, ct came back fine but he had a lot of fluid in his middle ear , he was put on a Iv antibiotic and stayed in the hospital , day three of this stay his ear had a small trace of blood coming out of the right ear , of course they said he must have been picking at it , but days later the small trace got to be more and more till it would drip out his ear then his left ear started bleeding they said the infection was bad enough it caused the bleeding , now my son is coughing getying nose bleeds ,bleeding ears and pains in his head , he was sent home because blood work and ct was fine , he went to see a ENT who put tubes in his ears in in may 2013 because these infections would not go away , June my sons ears got worse and he started having trouble hearing , he wouldn't eat and slept all the time , in aug 2013 my son was sent to a children's hospital because these red/purple marks started showing all over his face,neck,chest,back and he started having traces of blood in his pamper and red blood cells in his urine , it's now oct 2013 and my son still has all these problems but now they blood is coming out of his skin were the marks are . But doctors say he is to young for wegeners I believe my son is slowly dieing and no one will help me , I live in Nova Scotia , Canada btw . Do you think my son has wegeners ??

[Debbie C]

Hi Kay, I am so sorry for what you and your poor son are going through. I can't believe they released him from the hosp. with all these symtoms and no further testing. Phil on here lives in Canada and I think he's knows all the top notch drs. to go to. I'm sure he will chime in on here and maybe he can help. Has he been seen by a reumatologist or by a neuroglogist for his head? It just seems weird that it came on all of a sudden while he was just sitting there. Had he been sick before? Did they do a ct scan of his lungs. I am sorry I can't help but I definately think you need to find some specialist SOON. Keep us posted, and I will keep you both in my prayers:hug2:

[drz]

Carrie is on this forum and lives in NB. Maybe she can offer some advice on how to get another consult with a better doctor.
They should keep pursuing what is wrong till they have a diagnosis so they know how to treat the problem. What are they call the problems so far? Why isn't treatment helping if they think they know what is wrong? I don't know how your health care system works but I would keep searching for help till I found some.

[Kaysphotography]

They have him undiagnosed , right now all behind his ear started in a rash , I'm so worried but they say his age is ruling out wegeners , but its the only thing I can find the remotely comes close to what is going on , they did a chest scan and it always comes back he has a chest infection of some sort , his ct on his head came back find so they say don't worry about it , my peds doctor said if he was 14 or older she would diagnose it with wegeners but his age there's no way :/ my poor boy is always bleeding from his sinus areas (ears,nose) and the marks are like broken blood vessels bleeding out into the top layer of skin , also blood in his urine that you can see, but they said kidney infection ...

[Kaysphotography]

Forgot to add his doctor did blood work and noticed my son didn't take to any of his baby needles (2months,6months,12months,18months,24months)

[pberggren1]

This could be Wegs but in such a young child it is hard to say for sure. Only a good Wegs doc or Pediatrician would know for sure. My former doc is in Yarmouth now. His name is Senyo Tagboto. He is a nephrologist. Not sure he would see your son though being that he is under 18. The youngest I have heard of WG is in a 4 yr old girl. I would also think there would be some good docs in Halifax that would know Wegs. I would go to a university hospital there.

[TommyG]

I'm very sorry for you and your son. I don't know if there has been other cases of Wegeners in children with similar ages to your son. However, his symptoms sure sound like Wegeners to me. In fact I had most the same symptoms; bloody noses, ear pain, hearing loss, a red rash similar to the one you described, coughing up blood, and severe headaches. Also, so many of us had trouble getting diagnosed when our disease began. I would agree that getting your son diagnosed quickly is crucial. Maybe a second opinion from a Wegeners specialist?

[Alysia]

Hi,
I am so sorry for you and for your son.
my "formal" WG started acutely at age 40 but was smoldering years before. in addition, when I was 17 yo I had strange joints inflamtion plus strange wounds in my skin. I think is was wg and then I was in non-med remision for years.
The point is that just yesterday my mom told me that since I was 2 yo I had a lot of ear infections, that the docs were drainning my ears and then there was a lot of purulence and blood. I remeber myself dimly, taking cotton wool out of my ears full of blood, and terrible pains in the head.
I think WG is an option.
I am sending my praying to you and to your son.
please update us.

[mishb]

Hi Kay,

I have heard a story like this just recently with a little boy - his sister is a member on here and has WG.
It does sound like WG but please don't get your heart set on just the one condition, when there could be other conditions that it could also be....keep looking and keep pushing those doctors.


This particular little boy was bleeding through his skin and basically everywhere else plus the rash.

He had what is known as ITP (Idiopathic Thrombocytopenic Purpura).
He received an infusion of IGG (immunoglobulin G) and things came good.

Has this been tested?

My heart goes out to you and your son - I hope and pray that an answer is found very quickly.

[gilders]

Michelle speaks sense.
All the symptoms you describe are symptoms of WG, but as Michelle mentions, it could be another condition. I know that's not much use to you and your son.

I know that there is supposedly older ages where WG is more likely, but more and more cases that hear of (mostly from this site) seem to be younger and younger people (I was 17 when diagnosed). I have not heard of a definite lower age limit for WG. There is exceptionally rare cases of other illness such as Alzheimer's in very young people, so I would not personally be surprised if a 2 year old had WG.

I really feel for you and your son. I think all you can do is to keep pressing for a diagnosis.

[drz]

They have him undiagnosed , right now all behind his ear started in a rash , I'm so worried but they say his age is ruling out wegeners , but its the only thing I can find the remotely comes close to what is going on , they did a chest scan and it always comes back he has a chest infection of some sort , his ct on his head came back find so they say don't worry about it , my peds doctor said if he was 14 or older she would diagnose it with wegeners but his age there's no way :/ my poor boy is always bleeding from his sinus areas (ears,nose) and the marks are like broken blood vessels bleeding out into the top layer of skin , also blood in his urine that you can see, but they said kidney infection ...

If they can't diagnose it and treat it will they help you by referring you to another treatment facility that might have the skills and expertise to diagnose him correctly and start appropriate treatment. If it were my child we would go to the Mayo Clinic since they are known as world class medical facility that specializes in cases hard to diagnose or treat. The next best option to a world class medical facility is finding the largest medical facility affiliated with the best med school that you can reach. University med facilities seem to like a challenge and will be most interested in any unusual medical problem. I also think they will be highly motivated to obtain some relief for the child and family too.

Wegs can imitate a lot of different medical problems which is part of the reason it is often hard to diagnose, but if they think it is like GPA, are they willing to start treating it like GPA. I understand the need to be very careful about any treatment for a child that young so i would want some expert pediatrician involved in any treatment.

[rebekah]

Oh, Kay, I'm so sorry to hear about everything you are currently going through with your son. I had most of those symptoms, so it sounds like it could possibly be wegs. I don't think the doctor should discard it as a possibility just because of his young age. But like Michelle said it could also be something else. I would recommend finding a doctor that has experience with WG or, if possible, make a trip to Mayo or Cleveland Clinic. I hope you have an answer soon so he can be on his way to feeling better. Please keep us posted on your son's health. Sending prayers your way.

[Kaysphotography]

Noah (my son) he was already tested for that and does not have it , today then did a skin biopsy to check the vessels , he is starting to get sores on and in his mouth ? And has a blister looking thing in his nose

[COWG]

The C-ANCA test would tell if he has WG, a specialist in Vasculitis, or other rheumatic diseases would do that test.

[annekat]

I believe I have read somewhere of a child almost as young as your son who had WG. I would not rule it out, but would also consider what the others have said about other possible conditions. It appears you must be very persistent. It is hard to imagine them sending you home with a child that young in the shape he is in. They need to try harder and to quit using the excuse that he is too young for Wegener's. If it isn't WG, they need to find out what it is instead of just giving up on him. They could contact one of the medical consultants on the Vasculitis Foundation website, under Support, and ask them if this child could possibly have Wegener's, or if they won't, perhaps you could do it yourself. This sounds like an emergency that has been going on too long. I'm glad you found our forum and I wish we could be of more help. Please let us know how things go. I'll keep you in my thoughts and prayers.

[Kaysphotography]

He had his biopsy with on location freezing and today woke up sick with a high fever and bloody ear , his head hurts and his legs are sore to the touch we are takin him to the er now

[Alysia]

Dear Kay,
my heart and my praying are with you and Noah.
it is good decision to take him to er. don't let them send him home without diagnosis and treatment.
please update us. we are with you. holding your hand and praying.

[mishb]

Prayers are being sent from Australia too Kay.

Good luck at the ER and, if it was me, there is no way my child would be going home in the sick state he is in.
Put your foot down - do what ever you can.

I hope things get sorted out quickly

[drz]

Best wishes for some good news and quick recovery.

[whatthewhat]

Kay (?) - YES IT CAN BE. Please contact me - I will pm you my info - I can put you in touch with a couple of moms who have young children with wegs. Also - the Pediatric Rheumatologists of Children's Hospital Los Angeles have many Wegener's cases & can consult with your doc - ask your doc to do so (immediately.)