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Kobis Update

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#1 kobi



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Posted 22 June 2007 - 11:15 PM

Hi all Kobi has benn diagnosed with diffuse scleroderma. He has thickining around lungs, skin and fingers are arched , all of his body is stiiff and treatment is steroids via drip once a month, immune suppressents daily, physio daily, regular blood tests, is this common form of treatment. l dont know how to deal with being told my 14 yr old has to live with a disease and also kobi when he notices silly little wounds cause big problems with sclero. how can l best deal with these situations as they arise. He loves outdoors, motorbikes, bikes and scooters and of course he does not see it as serious. kobi is the third child case of scleroderma at Melbournes childrens hospital this hospital caters for children all over australia. regards jenny kobis mum.

#2 Margaret


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Posted 23 June 2007 - 01:15 AM

Hi Jenny ,

I don't know what to say exept that I am walking in your shoes, too. Gareth (19y/o) was diagnosed last Nov.....his is internal with no skin issues.....yet. I know that he spent the last 8 months in pain and is still suffering from gastro issues. It's so hard to watch. He ate his breakfast and is back upstairs in bed. He did start Plaquenil 3 weeks ago and I do see some 'light' back in his eyes and he does have more energy. Just wanted to let you know you and Kobi are in my thoughts.

Take care, Everyone.

#3 jefa


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Posted 23 June 2007 - 02:30 AM

Hi, Jenny (and Kobi)

I am sorry to hear about Kobi's diagnosis, but glad he is in good hands at the Melbourne Children's Hospital and receiving treatment right away. My advice to both of you is to work very hard to keep as much normal activity as you can. There may be limitations to some of the things Kobi will be able to do, but keeping active is good for the mind and spirit as well as the body. Kobi needs to be with his friends and have fun as do all 14 year olds. He will eventually become accustomed to the new routine and appreciate how to best take care of himself. And of course you will be his rock. :)
Warm wishes,

Carrie Maddoux
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International Scleroderma Network (ISN)

#4 Sam


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Posted 23 June 2007 - 02:32 AM

Jenny, it sounds like the doctors are doing everything they can for Kobi, I 'm sorry to hear all that he is going through. All I can say is take some deep breaths and just take it easy and just be there for Kobi. I know its hard being a caregiver, so you make sure your taking care of your self. I'm glad Margaret posted to you as well. I think its good to talk with outher parents who children have sclero also. I hope this has help you, take care, Sam

#5 WestCoast1


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Posted 23 June 2007 - 06:07 AM

Hello Kobi's mum,
Thank you for the update on Kobi. It sounds as though Kobi is getting good care from both the Children's hospital and from you! I really do agree with Jefa that doing all of those "boy" things would be very good for Kobi dispite the possible complications.


#6 nan


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Posted 23 June 2007 - 06:54 AM

Wow! You have a lot on your plate. It sounds like Kobi has great doctors and that they are being aggressive in treating the scleroderma. My son is 14 turning 15 and I can't imagine him dealing with scleroderma. Of course, kids are a lot tougher than you think. They're quite resilient. My thoughts are with you. Take care of yourself too.

#7 epasen


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Posted 24 June 2007 - 09:37 AM

Awww, it was really hard to read what your whole family is going trough :[ Hope it's not getting too bad and luckily he's getting great care! :)

Take care,

#8 janey


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Posted 24 June 2007 - 12:09 PM

Hey Mum,
Thanks for letting us know how Kobi's tests went. I'm so sorry that he was diagnosed with dSSc and is already seeing many of the symptoms. It's so important that you and he stay on top of things and make the doctor aware of any and all changes. Gotta catch things early. We do have a page on Juvenile Scleroderma. It lists several research studies that you might find interesting. The first study under the research section states

"Juvenile SSc appears to be less severe than in adults because children have less internal organ involvement, a less specific autoantibody profile, and a better long-term outcome."

You've received some good advice and I say "ditto". Let Kobi do as much of all that kid stuff that he can do. Any fun is a great distraction! Oh - to be a kid again! Please keep us up on Kobi's status and give him a very big hug. Our thoughts are with him.

Big Hugs,
Janey Willis
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#9 epasen


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Posted 27 June 2007 - 04:46 AM


just noticed you're wondering how to deal with "sclero situations" and what to tell Kobi.. well my opinion is you have to be totally honest, cause it's his life you're talking about. When things come up, it's best to hear then right away as they are. I've realized this very clearly: I got this disease when I was so little I didn't understand it, and when I grew up things were "okay" and I think my parents never told me things they should have, maybe they thought they weren't important.

Your son has nice interests, and staying busy with life and interesting, normal things and living like normal teenager are best things your son can do :)

#10 Sharonvandee


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Posted 27 June 2007 - 11:25 AM

Sorry to hear that your family is learning to deal with this. I am off to Melbourne soon to see sepcialist and I have heard there are some great DR there which I hope are helping you and your family find ways to cope.
Kindest Regards


Diagnosis Scleroderma-crest, Scolliosis, Asthma, ILD, Plueral Fibrosis, GERD, Hiatus hernia, Anticardiolipin positive, ANA positive

a little bent and broken and almost beyond repair!