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gwenllian111
11-13-2010, 05:35 AM
Hi guys,

So sorry haven't posted for ages, have been frantically busy lately.

My daughter, Seren, is now 5 and a half years old. I had her when I was having a terrible flare up, and as a result I had awful pre eclampsia, and when I was pregnant, she stopped growing, and the whole thing was an absolute nightmare. So, she was born at 33 weeks weighing a tiny 3lbs. She was very small for dates, and has had a problem since birth gaining weight.

She has been systemically unwell for years now. Loss of appetite, constant high temperature, extreme fatigue, and raised ESR and CRP. ESR: 122, CRP: 98 last week - NO INFECTION). She FINALLY had some immunology tests today to check signs of an auto immune disease. In a way i'm relieved, but also angry that it's taken the doctors so long to do something instead of fobbing us off all the time.

The sheer thought of my little girl suffering like WG patients do, makes my heart sink. Is there any way that WG is hereditary? Do her symptoms sound auto immune related to you?

I just want her better, with a quality of life she deserves. x

drz
11-13-2010, 05:58 AM
Hi guys,

So sorry haven't posted for ages, have been frantically busy lately.

My daughter, Seren, is now 5 and a half years old. I had her when I was having a terrible flare up, and as a result I had awful pre eclampsia, and when I was pregnant, she stopped growing, and the whole thing was an absolute nightmare. So, she was born at 33 weeks weighing a tiny 3lbs. She was very small for dates, and has had a problem since birth gaining weight.

She has been systemically unwell for years now. Loss of appetite, constant high temperature, extreme fatigue, and raised ESR and CRP. ESR: 122, CRP: 98 last week - NO INFECTION). She FINALLY had some immunology tests today to check signs of an auto immune disease. In a way i'm relieved, but also angry that it's taken the doctors so long to do something instead of fobbing us off all the time.

The sheer thought of my little girl suffering like WG patients do, makes my heart sink. Is there any way that WG is hereditary? Do her symptoms sound auto immune related to you?

I just want her better, with a quality of life she deserves. x

I have not read anything that suggests a hereditary component to the disease. Infections and exposure to toxin might be a factor but this is not established as medical fact either.

Jack
11-13-2010, 06:06 AM
All the work seems to point away from it being hereditary. There are hardly any instances of more than one case in the same family.

eileenv
11-13-2010, 06:19 AM
Jack i don't think it is hereditary but i have an auto immune disease ?wegener's, my son when he was 29(he's 39 now) was in hospital with schonlein henoch purura, he has had no reoccurance of the disease since.

elephant
11-13-2010, 06:27 AM
Gwen, sounds like your daughter might have some kind of rare autoimmune disease. It is so hard to diagnosis children especially with autoimmune diseases, not many pediatric Rheumatologist who specialize rare autoimmune disease's. I know CNN did a piece on a hospital that took care of children with rare diseases ....meaning these docs took cases that other docs could not figure out. I will try to find it for you.

jola57
11-13-2010, 07:13 AM
Gwen, a doctor in Toronto, Canada is doing a research into genetics of Wegeners. I think her name is Dr. Siminowich maybe it would be worth it to contact her. Please look her up on the internet. Oh Gwen I realy hope that it is just something simple and she outgrows it.

Sangye
11-13-2010, 08:40 AM
Gwen, low-grade fevers are more likely with autoimmune diseases. Chronic high fevers suggest some sort of infection. Chronically fighting an infection and spiking high fevers would certainly cause fatigue. I know you said "no infection" but some things like Lyme Disease do not cause typical changes in WBCs to indicate infection. It'd be a good idea to bring her to a major center and have a pediatric rheumatologist and infectious disease specialist work together to figure it out, if such a thing is possible.

Brooke
11-13-2010, 09:24 AM
Poor girl, I hope she gets better fast!