|
|
New User
Posts: 2
| Hi Everyone,
My daughter, Mary Graham, is almost 9 months old with a 50 degree curve and very rigid scoliosis. It has progressed since birth. Tried a cast, but that did nothing. She also has significant hip dysplasia, no hip sockets. Have scheduled surgery at Children's in Birmingham to help improve her hips. Still going through genetic testing and scheduled to see a neurologist. They are unsure about her "type" of scoliosis and the reason behind it. Her MRI and xrays showed normal bones. There are no fused ribs or vertebrae. The doctors don't know why her back is so rigid, possibly could be a muscular scoliosis. Do any of your children have anything similar to this?
We are heading to CHOP this Sunday to see Dr. Campbell on Monday morning. Our pulmonologist believes the VEPTR will be in her near future. We know it's going to be a tough road for her. Wanted to also know what questions I should ask when we see Campbell for the first time? I have enjoyed reading all your stories and the fact that everyone seems to love Campbell and his team. I think God has lead us to where we need to be to get the best treatment for Mary Graham.
thanks for all your stories...it helps to have found other families going through similar situations.
take care,
Jennifer Sheppard (mom to Mary Graham) |
|
| |
|
Expert
Posts: 3243
   
Location: Utah | Welcome! Nice to "meet" you. As you know, there are many on this list in various stages of VEPTR treatment. Each child is unique and has very different medical issues. I'm sure you will find this a great place to share experiences and support. My Braydon is now 16yrs old. We went to Texas when Dr. Campbell was there to have his implant surgery. Braydon now sees Dr. John Smith in Salt Lake City. There is a very good pediatric orthopedic surgeon in Little Rock - Dr. Richard McCarthy. If you still have questions after seeing Dr. Campbell, Dr. McCarthy may be a good one to visit. My suggestion is to ask questions that are specific to Mary Graham. Ask about what risks are involved with surgery. What risks are there for waiting. Dr. Campbell is big on current and future lung function. He will answer any questions you have about the lungs. Good luck next week. Let us know how your appointment goes.
|
|
| |
|
Veteran
Posts: 167
Location: Phoenix, AZ | Hi Jennifer. It's great to have you on the VEPTR site. You mentioned that Mary is going through some genetic testing. Our son Carter has a genetic disorder called Mosaic Trisomy 16. It was discovered after having an amniocentesis. We had that procedure done becuase during our first ultrasound, my plancenta looked like it could not nourish a baby. It had holes like Swiss Cheese. Like I said they found an extra 16th chromosome in some, but not all of his cells, making it Mosaic Trisomy 16. He has been tested after he was born, but they are unable to find the disorder. I'm only mentioning it because we would have never known that Carter has this if we hadn't done the testing while I was pregnant. So... even if they don't find anything from her skin, or blood, or cells in her cheek, it doesn't mean that there isn't something there tying it all together. Carter had a hodgepodge of anomalies. I hope you do find the answers because it would be hard for me not to know why the anomalies are there. He was born with 54 degree scoliosis which progress to about 84 degrees by the time he had surgery at 18 months.
Carter is missing muscle on his right pectoral side and has a very minimal nipple, but he hasn't shown any problems with his strength so far. We are not experienced with a muscular scoliosis. Dr. Campbell did Carter's initial implants. His team did an extrememly thorough job of checking Carter out before the surgery. In fact, they found two heart conditions, which our doctors looked for and missed. We also felt very secure in that he had a lot of state of the art equipment that other hospitals might not have. We have a children's hospital in our city, but our ortho surgeon.. who could also perform the procedure, did not have access to the same type of imaging.
I wish you and Mary well and peace through the holidays, |
|
| |
|
New User
Posts: 2
| We had a good visit with Dr. Campbell in Philly a few weeks ago. Mary Graham's scoliosis is still progressing and starting to twist and affect her lungs. Dr. Campbell believes she needs the veptr, most like 2 of them, soon. So we are scheduled to have her surgery March 13th. She will have just turned one. Of course we are very anxious about the surgery and what will come after that. We loved Dr. Campbell and the staff and know she will be in excellent hands and that is the place she needs to be. Did any of your children have veptrs this young? Kristy, you mentioned Carter did at 18 months. How was his recovery? Any complications? MG is only 14 pounds, so we are hoping she puts on some weight before the surgery.
We will return to CHOP in February for MRI, CT scans, pulmononary testing-the full workup. Mary Graham had hip surgery last week here in Birmingham, so she is in a full spica cast from the shoulders down right now, but she is such a trooper and actually doing amazing. She should be out of this cast and possibly in a harness in mid-January. Any advice for us is great? Did any of you stay at Ronald McDonald? How long was your stay in the hospital? We are most likely going to do that since we will be there for a long time.
So many questions, I'm grateful for any advice or guidance. Thanks!
Jennifer
|
|
| |
|
Elite Veteran
Posts: 853
Location: Fort Wayne, IN | Welcome!
I'm glad to hear that your appointment at CHOP, and the hip surgery went well.
My son's scoliosis is caused by a genetic muscle disease. Since he was also very small for his age, and at the time VEPTR was still considered experimental, my son was 2 1/2 years old before we were able to get his VEPTR surgery done.
I hope Mary Graham is healing nicely from her hip surgery. Good luck in March, and let us know if there are any specific questions we can help you answer!
|
|
| |
|
Member
Posts: 15
Location: Texas | Hi Jennifer-
I just wanted to say hi and that my son, Corbin, had his initial implant when he was 11 months old. He had a few complications, but not because he was so young. In fact, we have been nothing but pleased with his VEPTR experience. Corbin has a big fan club at home, so I post an on-line journal so that our friends and family know how he is doing (and I don't have to make phone calls!) The link to Corbin's medical page is below and it has links to each of his surgery. I do not expect your first surgery to go like his (due to his complications) but it might give you a little insight to how things go. We see Dr. Simmons in San Antonio but Dr. Campbell consulted on Corbin's case and rounded on him a few times while he was in the hospital. He was great. Good luck and God bless. Please let me know if there is anything I can do to help.
Holly
http://www.themockexpress.com/Corbin_Medical.html
|
|
| |
We are new to all this...
