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Who knows?
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Caspian`s mom
Posted 2010-01-22 9:01 AM (#38624)
Subject: Who knows?


Member

Posts: 11

My name is Camilla and I am from Norway. My son Caspian is now 7 months. When he was born they found out right away that he was missing 6 of his rib on the right side. and he also has scolioces. He also had a vsd and his right lung was a little smaller. Hes right kidney missed.
Anyway, his vsd is no longer there :););) and he is a happy little boy whit no problems....YET!!! But i am very concerned about his futures and have many questions that no one in Norway can answer. There is no one else in Norway with this as i know...
He was diagnosed with Jarcho Levin, but now they don`t think it is that diagnose anyway...So i am a little lost...
Is there anyone who knows anything about this?

( hope you understand my bad english )
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Zoes Nana
Posted 2010-01-22 4:02 PM (#38625 - in reply to #38624)
Subject: Re: Who knows?



Expert

Posts: 3970
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Location: Plymouth, Pennsylvania
CAMILLA, WELCOME TO THE VEPTR BOARD...
AND THANK YOU FOR SHARING YOUR SON WITH US...
ZOE WAS BORN MUCH LIKE YOUR SON, BUT HER CONDITION IS DIAGNOSED AS "VATER/VACTERL ASSOCIATION"...
A CONDITION INVOLVING MULTIBLE SYSTEMS...
EACH CHILD IS DIFFERENT, BUT THE WORLD OFFERS MUCH HOPE TODAY....
ZOE IS ALIVE TODAY THRU THE MIRACLE OF THE "VEPTR", AND THE BRILLIANT MINDS IN MEDICAL SCIENCE...
AS BIG AS THIS WORLD IS...IT IS STILL A SMALL WORLD, AND YOU WILL FIND THE ANSWERS....
THE MIRACLE OF THE "INTERNET" MAKES MANY THINGS POSSIBLE TODAY...
PLEASE KEEP US POSTED, AND ASK ANY QUESTIONS YOU NEED TOO HERE...MANY OF THE DOCTORS HERE ARE CONNECTED TO BY EMAIL, AND VERY WILLING TO TALK WITH PARENTS, AND THERE DOCTORS....
GOD BLESS...
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Caspian`s mom
Posted 2010-01-22 6:05 PM (#38629 - in reply to #38624)
Subject: Re: Who knows?


Member

Posts: 11

Zoes Nana
Thank you very much for your answer.
i am so glad i found this web side Maybe i can find out more about Caspian`s diagnose
And the best of all...now i don`t fell so alone.
I wish you all the best;)
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Wendy
Posted 2010-01-22 7:00 PM (#38630 - in reply to #38629)
Subject: Re: Who knows?



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Posts: 599
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Location: Southern California
Hi Camilla,

Good luck to you... My son who is now 10, was born with several missing and fused ribs on left, thoracic region scoliosis, missing left kidney and a heart defect - as well as a hand thumb deformity... He was ultimately diagnosed with VACTERL Syndrome, but there was discussion on whether it was Jarcho Levin or possibly CHARGE Syndrome as well. VACTERL ended up being the final diagnosis. Regardless, each individual birth defect needs to be treated independantly and it really didn't matter to us what the overall diagnosis was... However, with some syndromes, such as Jarcho Levin, I believe, there is a hereditary/genetic element, so it is important to find out for future children and future generations of the family... Again, best wishes to you.

Wendy
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Caspian`s mom
Posted 2010-01-23 8:21 AM (#38631 - in reply to #38624)
Subject: Re: Who knows?


Member

Posts: 11

Dear Wendy

Thank you so so much...I found something about VACTERL Syndrome and everything seem`s too match
How is your son now? Has he had an operation and if, how old was he then?
And again- thank you
Best wishes to you to...
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Wendy
Posted 2010-01-25 4:03 PM (#38639 - in reply to #38631)
Subject: Re: Who knows?



Extreme Veteran

Posts: 599
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Location: Southern California
Hello Camilla,

Alex is doing great! He had full heart repair surgery at 6 mos of age. He's had over 20 surgeries over his lifetime. He is 10 years old... He had hand repair at 11 mos, and had his major VEPTR implant surgery done when he was 2.5 years old. He is rarely sick, active and happy. His back is definitely not perfect -- but he is functioning well and living life fully.

W.
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Caspian`s mom
Posted 2010-01-25 5:06 PM (#38640 - in reply to #38624)
Subject: Re: Who knows?


Member

Posts: 11

Wendy.
Wendy
Can I ask you how many ribs he is missing on the left side? it is the bottom or the top or are they a bit everywhere?
my son is missing the 6 lower ribs on the right-hand side. and some of those he has are possibly grown.
He has a scoliose of around 40% now. He has spent corset since he was 2 months. and we were told he had to use it until he was 15.
but now it's under discussion whether to use it. specialist said he did not need to use the corset as there will be significant for his wealth alike. He's supposed to operate anyway.
I hope he will not have to use it ever more. Why worried him more than necessary, when not working. Did your son corset?
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Wendy
Posted 2010-01-27 1:14 PM (#38651 - in reply to #38640)
Subject: Re: Who knows?



Extreme Veteran

Posts: 599
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Location: Southern California
hello,

i am not sure how many ribs are missing on left... I'd say about half - in the middle spine... What he did have was alot of "floating" ribs (small, malformed) at bottom and top, and a significant mass of fused ribs in middle, which were separated and two VEPTR devices were placed to keep them open and spread apart. You can see his heart beating, because it is not enclosed within a rib cage, if you look at his chest... I have an xray of my son in the albums on this site (look under "Wendy").

My son has never had to wear a "corset" or "brace" (as we call it here in the US). From what I understand, most often, braces do not help or provide any correction for congenital scoliosis... However, braces CAN provide support, and some protection for missing ribs, but it is not something that can correct malformed vertetbrae...

hope this helps.

Edited by Wendy 2010-01-27 1:20 PM
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Caspian`s mom
Posted 2010-09-05 1:42 PM (#39766 - in reply to #38624)
Subject: Re: Who knows?


Member

Posts: 11

Hello...Its been a long time since i was on this page.
Caspian is now 14 mounths and doing very very well ;);) He is a happy little boy. But he will have his first veptr surgery maybe in 5 mounths. Atleast before he gets 2 years old.
i am so exited. ho will things be after surgery`? must him live with pain after or??
ihope we will be able to stop hes scolioses a littlebit becouse the back seems to be wors. i thing his scolioese is 50% now. it was 33 when he was born.
When can they operate his back? many questions from me...
They say God doesnt give you anything you cant handle. I just wish he didnt have so much trust in me....
- Camilla -
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Zoes Nana
Posted 2010-09-06 12:34 PM (#39773 - in reply to #38624)
Subject: Re: Who knows?



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Location: Plymouth, Pennsylvania
CAMILLA,
I HAVE SEEN CHILDREN HAVE THE SURGERY AT THE RANGE YOU MENTION...EVERY CHILD THOUGH IS DIFFERENT...
THE SURGERY IS NOT AN EASY ONE, AND THE ROAD IS NOT AS EASY ROAD....AS THERE WILL BE PAIN, AND TIME FOR HEALING, BUT I WILL ASSURE YOU THIS...
THE QUALITY OF LIFE, THAT IT HAS GIVEN TO ZOE, AND SO MANY OTHERS...LEAVES ME SPEECHLESS....
IT HAS NOW BEEN 10 YEARS FOR ZOE WITH HER VEPTRS...A LIFE THAT WOULD HAVE NEVER EXSISTED TODAY WERE IT NOT FOR '2 TITANIUM RIBS'...
THANK YOU SO MUCH FOR SHARING CASPIAN WITH US, AND PLEASE KEEP US POSTED...
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Caspian`s mom
Posted 2010-10-08 1:21 PM (#39989 - in reply to #38624)
Subject: RE: Who knows?


Member

Posts: 11

CAPSIAN CAN WALK. He is now 15 mounths. I`m so proud..;) He is climing everywere and seems too find hes own way in every singel way..
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Carmell
Posted 2010-10-08 9:50 PM (#40004 - in reply to #39989)
Subject: RE: Who knows?



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Location: Utah
Congratulations to Capsian!  What a great accomplishment for him, and you too!  Thanks for letting us know!  Hope everything else is going well...
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Caspian`s mom
Posted 2010-11-27 5:49 PM (#40339 - in reply to #38624)
Subject: Re: Who knows?


Member

Posts: 11

My dear Caspian.
Many days have been heavy. Many tears have been fields.
The uncertainty has been bad. How will the future be? will you have a nice life?
Will the operations help you?
We have many concerns with you, but fortunately even more joy.
You are a wonderful hearted boy. When you ran across the floor with the world's loveliest smile. Then I know inside me that this is going to be fine.
Soon we will go down to the national hospital for X-ray and planning of the first veptr operation. We are excited and a little scared. But have a great hope in me that this is good. We need to do. Now we are ready for everything. This we will do together my beloved prince;)
Mommy loves you and will always stand by your side;)
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Caspian`s mom
Posted 2011-11-20 10:53 AM (#41429 - in reply to #38624)
Subject: Re: Who knows?


Member

Posts: 11

The day after his 2-year day Caspian had hes first veptr surgery at Rikshospitalet in Oslo.
The Operation went beyond all expectations. It is amazing what doctors can do today. Move ribs, split them up, insert titanium rods and I do not know what. Fantastic;)
A big thank you to Rolf Rise and anyone who does a wonderful job at the hospital for these children;)
It will be operation every six months, but not as large intervention every time. But when you see the result of the operation I have to say that my major concerns are not present longer. my dear boy is so great and has really been just fine after surgery.
Thanks for that technology has come so far that today;););)
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Diane17
Posted 2011-11-21 8:25 PM (#41430 - in reply to #38624)
Subject: Re: Who knows?



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That's wonderful so glad caspian is doing well.
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mommom_of_four
Posted 2011-11-21 10:14 PM (#41431 - in reply to #38624)
Subject: Re: Who knows?



Member

Posts: 15

Such great news! Glad to hear he is doing good.
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Carmell
Posted 2011-11-21 10:27 PM (#41432 - in reply to #41429)
Subject: Re: Who knows?



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Location: Utah
So glad to hear the good news!  Many hugs and well wishes all the future surgeries go as smoothly.
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Nicki, Alex's Mom
Posted 2011-11-22 12:51 AM (#41435 - in reply to #41429)
Subject: Re: Who knows?



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Location: Fort Wayne, IN
Excellent! I'm very happy to hear that things are going so well for Caspian! Thank you for letting us know.
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Emily's Mom
Posted 2011-11-25 8:24 PM (#41440 - in reply to #38624)
Subject: Re: Who knows?


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Great news!
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