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New User
Posts: 3
| I cannot tell you all how happy I am to have found this group!
My name is Carla, mom to Henry (15 months old) and adopted 3 months ago from Ukraine...he was misdiagnosed with arthrogryposis there but really has Larsen's Syndrome, a very rare (like 12 kids in US have it) genetic disorder that resulted in his cleft palate, dislocated hips, elbows, and knees and a 110 degree spinal curvature... He has had multiple hospitalizations for pneumonia/ bronchitis/ croup...
I just found out about the VEPTR procedure through our PT and am very interested in it for our little (13 pounds due to severe malnutrition) little guy...
First, I read the FB group is very active, what is the title so I can ask for an invite?
Second, Dr. Campbell is now at CHOP right? How have those of you who began treatment with a local orthopedic doc dealt with telling him/her that you want to see Dr. Campbell to consider VEPTR? I want to keep on good terms with our really nice local doc but he is not really interested in considering anything other than traditional surgery in 3-5 years...
Finally, parents with kiddies with a curvature that was over 90 degrees, what sort of correction have you gotten with VEPTR? I was told with traditional surgery corrections of 20 degrees are considered a very good result...but I believe VEPTR has better results most of the time, right?
Thanks so much!
Carla
www.bringinghenryhome.blogspot.com ( if you would like to see our little guy!) |
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Expert
Posts: 3243
   
Location: Utah | Hi Carla, Welcome! I will try to find a moderator for the VEPTR kids FB group to have them add you. I think the title of the group is VEPTR Kids... hmm... Dr. Campbell is one of the co-inventors of the VEPTR, but there are several very good, and very experienced ped. orthos in the country who will do a great job. The benefit/perk of going to CHOP is that they have the dynamic MRI to visualize the lungs and how they work. With a curve as large as Henry's, his lungs are already compromised. Part of his lack of weight gain issue could be that his body is using all the calories he takes in just to keep breathing and oxygenating. Many of our kids have that issue here. There aren't enough calories left for typical weight gain and growth. The VEPTR docs all understand this. If you let us know what part of the USA you are in we can offer suggestions if traveling to CHOP is difficult. Your local ortho should support you in getting another opinion. S/he should never discourage you from wanting to learn more about your child's condition. The degree of improvement after any surgery is subjective. There are many variables involved and each child is very different. If Henry has a flexible spine, you may see a huge improvement in the beginning. Then, his spine may "settle" into a position that is between the worst measurement and the post-implant surgery measurement. My Braydon (now 16yrs old) did not get any correction in his congenital curve with the VEPTR, but his lower compensatory curve improved some, and the best part was that his right lung gained 40% more in volume and size with the implant surgery! His body is also very well balanced - shoulders are even, pelvis and neck well aligned, etc. Sending our best your way. Looking forward to getting to know your family.
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New User
Posts: 3
| Yes! Henry's problems gaining weight and multiple hospitalizations for breathing problems all "make sense" when I began to read the other stories here...
I am in the Chicago area so it seems that getting to any place that does VEPTR would entail quite a bit of travel...I have heard great things about CHOP and Dr. Campbell, and because Henry is on the low side (13 pounds) of the weight I think is usually required I would want to go where they have lots of experience with the tiny kiddies... Thanks so much! I found the Room TO Breathe FB and we page too...
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Member
Posts: 8
| U of M Mott's has a great program!!! We love Ab's team of Doctor'd there. She will be getting the VEPTR hopefully soon we just need her to be tall enough. It is only a few hours from Chicago and they have in there new facilty a Ronald McDonald house that you can stay in since you have to travel. |
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New User
Posts: 3
| Abbee - is that University of Michigan or Minnesota? And how big do they want your little one to get before the procedure? Henry is only 13 pounds and 25 inches long at 15 months...it is probably the "triple whammy" of malnutrition for a year in orphanage/his Larsen's syndrome (he will be very short)/and how hard he has to work to breathe...I saw that Dr. Campbell at CHOP recently did VEPTR on the smallest kid ever this fall, 12 and a half pounds, so I thought he would have the most experience with really tiny kiddies...
Thanks for taking the time to post! Merry Christmas!
Carla - Henry's mom
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Member
Posts: 8
| It is U of Michigan. Ab's is 27 inches long and 16 pds at 7 months we are very blessed she has no stomach issues and the reason they want her to grow more is that she has no lung issues as of now. The more she can grow the less expansions she will need in the future. Dr Campbell is great, we also went to Bostons Childrens Hospital who is ranked number 1 for pedriatic orthepedic surgeries and are experts with the VEPTR and they are the reason we chose U of M. With how many surgeries it will be in the long run it was best to be closer to home. I was skeptial at first but once I met her team I knew she was in great hands. Believe me I understand wanting to see the best and Dr. Campbell co created the VEPTR. Good luck in your decision I know how tough it is.
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Expert
Posts: 3970
Location: Plymouth, Pennsylvania | WELCOME CARLA TO THE 'VEPTR BOARD'...AND THANK YOU FOR SHARING HENRY WITH US....WE HAVE SEVERAL FB SITES NOW WITH EVERYDAY INFORMATION...HERE IS ONE OF THE LINKS...http://www.facebook.com/home.php?#!/groups/56052176312/
THE FACEBOOK SITES ARE BASICALLY NEW, AND SOME WONDERFUL INFORMATION, AND MANY OF THE PEOPLE COMING TO THEM IN SITUATION LIKE YOUR OWN, WHERE YOU ARE IN THE BEGINNING OF THE PROCESS...I ALSO SUGGEST, WHEN YOU HAVE TIME, THAT YOU MIGHT READ THRU MANY OF THESE POST HERE ON THE 'VEPTR BOARD'...LOTS OF HISTORY, AND PICTURES...ANSWERS, ECT...
ZOE IS SOON TO BE 14, AND AT THE END OF THE VEPTR PROCESS...SHE WAS #8 FOR BOSTON CHILDRENS-DR. JOHN EMANS...DR. CAMPBELL WAS ALSO ON HER CASE IN THE EARLIER YEARS...ALTHOUGH HE MET US IN BOSTON...WE NEVER TRAVELED TO TEXAS...WE LIVE IN PENNSYLVANIA, AND TRAVEL ABOUT 6 HOURS TO BOSTON...WHERE WE EVENTUALLY TRANSFERRED ALL HER CARE AND DOCTORS TO...VERY DO-ABLE, AND WE FELT IT VERY IMPORTANT TO KEEP HER WITH A TEAM AND ANESTHESIOLOGISTS THAT KNEW HER WELL...I WISH AND PRAYER FOR THE BEST FOR HENRY...AND PLEASE KEEP US POSTED, AND JOIN US ON 'FACEBOOK'...GOD BLESS...
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New Intro and looking for FB group...
