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bjoyner
Posted 2011-04-27 6:14 PM (#41051)
Subject: seeking information


Member

Posts: 6

Location: Untited Kingdom
Hi there all,

Over the last week it has been bought to my attention that there maybe hope for my 16 mth old daughter yet. The VEPTR procedure. I have many questions I want to ask but not sure were to start.

My daughter was born with cerebro costa mandibular syndrom with perrie robin sequence and feb 2011 was also diagnosed with scholiosis "s" form which is currently sitting at a 36 degrees. My daughter has server gaps in almost all of her ribs front to back as well as 2 ribs that are lituarally floating posing a threat of damaging her lungs and other vital organs nearby. this is without the cleft palate which has been repaired as well as the malrotation of her bowl which has also been repaired.
Despite all of her medical problems she is a very indipendant little girl who isn't afraid to say how she feels she is sitting up walking with very little support eating/drinking well however still only just weights over 13lb.

Our doctors have mentioned 1 surgical procedure but not this one despite the fact this has been successfully performed in LONDON CARDIFF LIVERPOOL etc... According to some research I have come across.

Can anyone offer both information that I can take to our doctors regarding this VEPTR procedure so that a referrel can be made as well as information should we have to begin the process of going futher a field for help such has BOSTON / CHOP?

Last but not least information on how to help my 11 yr old son who has the same condition as his little sister but without the scoliosis. Myself and my partner are struggling to work out how and when to tell him the true extent of his sisters problems and the potential outcome if we carn't find convince or provide her with medical assistance she so desprately needs.

Thank you for taking the time to read this I look forward to all responses.

Brianne x
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Zoes Nana
Posted 2011-05-02 3:38 PM (#41071 - in reply to #41051)
Subject: Re: seeking information



Expert

Posts: 3970
200010005001001001001002525
Location: Plymouth, Pennsylvania
BRIANNE,
WELCOME TO THE VEPTR BOARD...
YOU MENTION BOSTON AND CHOP...AND THAT WOULD BE 2 HIGHLY SUGGESTED HOSPITAL WITH 'CORE' VEPTR DOCS AT BOTH, AND THE INVNETOR OF THE 'VEPTR' DEVISE AT CHOP RUNNING A PROGRAM THERE...MY SUGGESTION IS MAYBE START WITH AN EMAIL...TO BOTH..I LOOK FORWARD TO HEARING MORE FROM YOU...AND I HAVE THE EMAIL ADDRESS IF YOU WANT THEM...GOD BLESS...
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bjoyner
Posted 2011-05-06 1:55 PM (#41084 - in reply to #41071)
Subject: Re: seeking information


Member

Posts: 6

Location: Untited Kingdom
Hi there,

Thank you for your message it is much appriated.
I have already emailed Mr Emons unfortunately I am still awaiting a reply. I would definately like the inventors contact information email etc.. What sort of information would you put into the email that might grab there attention? Is it worth mentioning that I live in the UK? Would this make a difference particularlly as I have now discovered that the procedure is in fact now available in the UK.

How would you broach the subject with your daughters doctors? Would it help if my daughters doctors at least agreed to getting a second opinion as well as exploring the possisibily of the VEPTR procedure by way of refferrals etc.. Also what sort of questions would you ask your daughters doctors?
Your advice and any usefull information will be greatly recieved.

Brianne x
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The Handleys
Posted 2011-05-09 5:22 PM (#41087 - in reply to #41051)
Subject: RE: seeking information



Member

Posts: 22

Location: Maryland
Hi Brianne,

My 20 month old daughter had her VEPTR's placed at CHOP and we felt very confident in the care she received there. The operation has made a world of difference for her and she is doing very well! My daughter was also born with Pierre Robin so I can understand much of where you are coming from with the combination of conditions your daughter has to deal with, except for the cerebro costo mandibular syndrome. From what I've heard of it, it's extremely rare. I know of one person who's daughter has that condition and it seems very challenging, but it seems like your daughter is able to do a lot despite her condition. That is wonderful.

Here are some great videos on YouTube that CHOP recently came out with that might be informative to you or the doctors you see. Dr. Campbell, the inventor of the VEPTR device, is in many of the videos. There are a series of 8 videos:

Video 1 - http://www.youtube.com/watch?v=cFeLG7ZdW4A
Video 2 - http://www.youtube.com/watch?v=TdFXX_DNcjY
Video 3 - http://www.youtube.com/watch?v=iiGeK3dhArU
Video 4 - http://www.youtube.com/watch?v=12Rq479cifc
Video 5 - http://www.youtube.com/watch?v=vL0Yo2Ay_lU
Video 6 - http://www.youtube.com/watch?v=pl_3UCsT8NM
Video 7 - http://www.youtube.com/watch?v=zW79zgxtpRk
Video 8 - http://www.youtube.com/watch?v=n4SpuvxcwEs

Take care and good luck. I hope the very best for your family. Let me know if there is anything else I can do to help!

Sincerely,

Lindsay



Edited by The Handleys 2011-05-09 5:28 PM
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Zoes Nana
Posted 2011-05-17 6:49 PM (#41095 - in reply to #41051)
Subject: Re: seeking information



Expert

Posts: 3970
200010005001001001001002525
Location: Plymouth, Pennsylvania
HOPING THAT YOU HAVE HEARD SOMETHING?
GOD BLESS...
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bjoyner
Posted 2011-05-24 7:01 PM (#41110 - in reply to #41051)
Subject: Re: seeking information


Member

Posts: 6

Location: Untited Kingdom
Hi there Lynsdey,

Thank you for your message and king words as well as the information you have given. CCM is indeed extremely rare and much more so as my 11yr old son also has CCM as well as pierre robin sequence as do I. You can imagine the hype that I and my children course amounst the medical world. We have many challenges but none that we are unable to deal with some easier then others granted.

As of yet we have not heard anything from Mr. Campbell or Mr. Emans and we are still waiting for a date for my daughters MRI and CT Scan as well as an appointment to see our consultant so that we can discuss the VEPTR procedure.

I always knew that these things take time these professionals are busy and there are some many patients that they can attend to at anyone time.

Frustration is beginning to set-in and I am beginning to get impatient and annoyed but I know I need to get a grip and know that one way or another this procedure will be discussed and an assessment will be given eventually. Perhaps some advice on how I can politely grab ones attention alittle quicker.

I will keep you all posted as and when I have news...

Many thanks to all

Brianne x x
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DStepp
Posted 2011-05-25 6:57 PM (#41113 - in reply to #41051)
Subject: Re: seeking information


Regular

Posts: 78
252525
My Son Bradley goes to Dr. Campbell. Emailing got me no where. His nurse Brian tells me he gets around 2,000 emails a day. So I just called the office and explained Bradleys situation and they got me appt. within the month. And the process started in May 2010 and He got surgery Jan. 18th of this year. He is doing great!!! Gave Bradley a whole new life. Its a rough start and surgery but in the long run worth it:):) Dr. Campbells office # is 215-590-1527. I will pray for your little girl:)
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bjoyner
Posted 2011-05-26 4:28 PM (#41116 - in reply to #41051)
Subject: Re: seeking information


Member

Posts: 6

Location: Untited Kingdom
Hi there,

Thank you for your message.

I'm pleased that your son is doing so well and experiencing life as he should, I'm also relieved that you and your family are able to enjoy watching your boy knowing that he has a chance. Whilst me and my family are also enjoying our time watching our little madam Jessica its never far from our minds it could cruely end at a blink of an eye. We look forward to the day where we can rest our thoughts and just enjoy.

I'm wondering weather it would be worth phoning however my dilema is that I live in the UK. The number you have provided is definately useful does the number include the area code outside of the states? if not would you or anyone else be able to provide the number so that I could call.

Many thanks to all your messages of thoughts and prayers as well as useful information tips and suggestions.

Brianne Jessica's Mom x
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kchristensen
Posted 2011-05-26 5:07 PM (#41117 - in reply to #41051)
Subject: RE: seeking information



Veteran

Posts: 167
1002525
Location: Phoenix, AZ
Hi Brianne,
My son Carter had his VEPTR done at CHOP by Dr. Campbell. His nurse Brian, was extremely helpful. I would advise calling, calling, and calling some more if you are not able to get a hold of anyone. I don't have the number for out of the US calling, but if you go to the CHOP website, there might be just a general number for those out of the country. It would probably send you to the operator. Ask for Orthopaedic surgery, Dr. Campbell's office. Once you are transfered ask to speak with Brian. I would call every few days and tell them where you are from so that he could at least advice you about weather or not the VEPTR sounds like a good fit for your daughter. Then you will most likely need to go to CHOP for an initial appointment. We live in AZ which is on the other side of the country, but we flew three times to PA so that he could have his surgery with Dr. Campbell. In my opinion it was very much worth it because not only is the most experienced doctor doing the surgery, but the rest of the medical staff are familiar with the VEPTR as well. If you do go out there, I would recommend staying at the McDonald House. It is a charity that offers a room for $15/ night but they do not make you pay if you are unable.... they basically ask you to pay that amount to help keep the faciliy running. They have a van that goes to the hospital, but we walked most days. Look up the McDonald House on the website before you go. You need to call so that they can write your name down, but there are no guarantees that there will be a room available. They can give you the names of a few hotels that you can make reservations with and cancel that day if you are able to stay with the McDonald House. They also provide dinner for the families, and they have a family room and playroom for tots.
In a way you are fortunate to be able to talk with your children about your experiences and challenges with the condition. I sometimes worry that Carter may feel alone because we don't know anyone in the state that has had the VEPTR.
Good luck with everything.
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bjoyner
Posted 2011-05-28 6:45 AM (#41120 - in reply to #41051)
Subject: Re: seeking information


Member

Posts: 6

Location: Untited Kingdom
Hi Kristy,

Firstly let say thank you for all your kind and useful information all of which will only help me and my family get the help we need for our daughter and perhaps my son.

You are right in saying that in a way I am fortunate as are my 2 kids. Its not every day that you stumble across a family with more than one who have to live with a rare condition net alone understand it. Its so hard for parents but equally for the children particularlly the young ones. I remember those childhood days very clearly. I'm the eldest of 4 none of my siblings have this condition and my parents had never heard of it net alone know anything about it. "How could they possibly understand" is what I always use to ask! The one thing however that I was always greatfull for and still am is that despite the lack of understanding there were always there they always tried to support and in most cases blindly. There love and protectiveness was unconditional and still is to this day. I want lie your boy will undouptably go through stages of confusion he will become frustrated and may well blame anyone and everyone for all that he has and will continue to go through. My advice is never stop being his mom always allow him to sound off without taking it to heart and always always tell him Your my BOY and I love you I believe in you and you are capable "The stars are there for the taking" . As Carter gets older include him in all desitions never hide anything from him or lye to him. If he wants to do something help and support him in achieving try not to wrap him up in cotton wool. My children are very lucky I know not only do they have me who actually does understand but they have each other to. There so loving so caring and supportive of one another and they are very funny together to. I'm not sure about in the states but our local childrens hospital of whom my children are under there care have several support groups for both parents and children of which I do take my children to another opportunity for them to meet other children alike. Also as my son is 11.5 yrs old he is a member on a website special taliored for children and just resently I have joined the face book page which is open to parents children family and professionals and of course there is here too. See if there is anything where you are by way of groups it might be through chop there is.

If there is anything that I can do or advice I can give you or simple need to sound off then I am here. My experiences are from a patient and parent background spanning 32 yrs in total and I've been through more than my fair share.

I wish you carter and your family all the best hugs and a prayer

Brianne (Jessica's mom) xx
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kchristensen
Posted 2011-05-28 9:16 PM (#41121 - in reply to #41120)
Subject: Re: seeking information



Veteran

Posts: 167
1002525
Location: Phoenix, AZ
Thanks Brianne!
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bjoyner
Posted 2011-06-15 2:53 AM (#41177 - in reply to #41051)
Subject: Re: seeking information


Member

Posts: 6

Location: Untited Kingdom
Just thought I would update...

We have now been given a date for my daughters MRI and CT scan (18/07/2011) Hoping that Jessica remains well so that the scans can go ahead. Unfortunately Jessica will have to be put to sleep which worries me as she is a GRADE 4... On the plus side our new journeny will begin which has got to be better then sitting in limbo land!!

As of yet we have not heard anything from either Mr. Campbell or Mr. Emans so our next step will be scans talk to our uk team and through them contact the states!!

In the mean time we have been enjoying having fun loving the sunshine as well as preparing for our eldest to begin a new journey within education.

Jessica is now walking confidently all by herself learning to climb as well as learning to sit herself down and last but not least eating her food at a table and displaying good manners not bad for a little girl of 18 mths who's had so much to catch up on!!

Speech wise she is also improving daily but still along way to go but we'll get there!

I do hope everyone is doing well my continued thoughts and prayers to our amazing children and there families

Brianne (Tom and Jessica mom)

xx
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