View Full Version : New to the Group Needing Advice!

01-15-2007, 12:27 PM
Hi my name is Lori and I am the mother of soon to be six year old twin girls. We live in Virginia - and Anna one of my twins has Prader Willi Syndrome of which one side effect is severe scoliosis - she wore a boston brace for three years off and on - her size due to her Prader Willi made it very difficult - anyway her curve is now at 65 degrees and her doctor wants to do VEPTR surgery - has anyone done this? I am very nervous and have done a lot of research and it makes sense but seems scarey and I know it is relatively new.

Any thoughts or advice would be appreciated.

Lori Guthrie :confused:

01-15-2007, 01:05 PM
Hi Lori...

I'm sure that Carmell will respond when she sees your message. Until then, click on the Search icon above and do a search on VEPTR. There have been other discussions.


01-16-2007, 02:17 PM
Hi Lori,

I saw your post on the VEPTR.com site. I know you will find lots of experiences there - many families in various stages of treatment for scoliosis. Many children with very different medical conditions. You are in great company.

01-22-2007, 08:46 PM
Hello, I am new as well but have been reading for a few weeks. My 8 year old was diagnosed with scoliosis but after heading to a larger hospital, she was diagnosed with spondylolysis and spondylithesis due to her hyperflexibility. I am concerned that she is only 8 and we are in for a long haul. We have an appointment at Boston children's this week with a spinal specialist.

Spencer's Dad
01-23-2007, 03:48 PM

Welcome to the forum. I hope all will go well over the next few weeks and months while you figure everything out. One thing is for sure, the folks here can help you get through it. If you have questions, post them. If you just want to vent. Post that too. Everyone here has been through similar things and we know how hard it is to get through. Especially at first when you don't really know what is going on. The beginning is the worst time because you just don't know what is going to happen, what to expect, etc. But you can do it!! And hopefully you will find things are going to be okay, maybe even better than you expected.

If it is going to be a long haul, my advice is to make sure you get doctors you can really trust and develop a relationship with. The forum is good place to look for recommendations on docs and hospitals. Hopefully you have a children's hospital close by with pediatric orthopedists who specialized and have experience treating kids with scoli and the spondylolysis and spondylithesis.

Welcome again. Hang in there. You can do it. Keep us posted.

01-28-2007, 10:16 PM
Hi Spencers Dad,

It seems like it has been such a long haul already! We went to Boston Children's and after waiting for almost 1 hour, they told us the there was a mistake in scheduling and the Dr we were supposed to see was not even in town. Just so you know, the hospital is 4 hours away. After the longest day in the world and my sister (a lawyer) telling them we weren't leaving without seeing someone, we ended up with a doctor that was fine. He confirmed the diagnosis and now we need to work with the Physical therapist to set her up for 3 days per week. The really long haul begins......

Question, they put her on Ibuprofen 200mg every three hours and after the first day,she was sick to her stomach. Any ideas on how to calm this or other things that might have helped?

J's Mom

Spencer's Dad
01-29-2007, 12:36 AM
mmm...that is a long day. Been there and done that before. Many times actually, but our hospital is only 30 minutes away. So I guess if you add a four hour drive onto an all day hospital visit it really is the long haul. Maybe you should look into staying at the Ronald Mcdonald House the night before or after (or both) your appointments. Then at least you can be rested for the drive. Dont know the cost in Boston, but the RMH here only charges $10 a night and offers a bed, kitchen and shower. We dont use it because we live so close, but we have helped others get there and it has been very helpful to them.

As far as the pain meds go, you may want to ask questions to your docs about the options here. My understanding is that ibuprofen is best for pain from inflamation (not boney issues) and works better on some body systems than others (such as soft tissue inflamation). Acetominephen (tylenol) is better for fevers and is a good general pain reliever. I know people who have stomach irritation when taking ibuprofen and so they switched to acetominephen and have had better success. There are other non prescription pain meds that may work as well as ibuprofen but you really should ask your doc about these. Another question I would pursue is why J is suffering from chronic pain and if there is anything that can be done to more permanently end the pain.

One other recommendation I would make is that since you live so far from your ortho, make sure you get a really good pediatrician that is closer to you. Someone who can help take care of more day to day issues, such as pain meds, and can help interpret information from your ortho, and can coordinate care and treatment programs. We have actually scheduled appointments for Spencer purely for the purpose of interviewing the doc before we allow treatment. And we had to pay for a couple of interview appointments before we found a developmental pediatrician that we really love. It was very much worth it!!! Having a good doc that you trust and who listens to you is priceless.

Hang in there. You're all J has and she may need you for a long time to come. You can do it though, and it is SO worth it. When it gets overwhelming, just remember to take deep breaths. Keep us informed and dont hesitate to post your questions or if you just need to vent. The parents here are very understanding and helpful. Between the lot of us, we have been through it all!!! But you probably should start a new thread since you are tied to someone else's thread here. You will get better responses if people can tell you are not just replying to someone else's thread.