Search:

It's been awhile since I've been on this forum. I came here initially when my daughter was born -- she has 9 incomplete vertebrae and we can honestly say they can't agree on the degree - other than...

We went for our 3 month evaluation and Emily's curve is the same as it was in July. We were really happy to hear that. Dr. Betz did say he wouldn't do anything to her until she's 8-10 degrees...

I wanted to welcome you. I don't have much experience with VEPTR as of yet, since my daughter is only 17 months and they don't want to do it until she's 2.

I do want to comment about Dr. Betz &...

Well the appointment went very well. I'm VERY impressed with the PA and Dr. Betz. They really seemed to know what they were talking about and there was no talking of fusion (Yea! - which Blakemore...

Thanks everyone. I may be in touch after our first appointment on Wednesday. My husband usually takes care of the appointments - as he's the stay at home parent. But initial ones - I like to be...

We just got great news.. our appointment is next Wednesday - I'll let you know how it went.

Thanks we think she's pretty special!

I just had to share my news. After dealing with Dr. Blakemore at childrens for almost a year now and having such difficulty with her, we've finally decided to go to Dr. Betz at Shriner's Hospital. ...

OK.. I know I haven't posted in a while, but Emily has been doing really well since her stent procedure. So we finally broke down and went to see the Orthopedic doctor to see what the next step was...

I agree with Carmell - my daughter had an MRI done to check on the spinal cord - and I would have a few people read it just to make sure.

However, if she's moving around alright I would assume...

Hi Gail! I'm Erin mother to Emily who is also a VATER/VACTERL baby.. She was born with cystic kidneys - only one is actually working, congenital scoliosis (9 vertebrae didn't form correctly) and...

Thanks for all the replies..

I totally trust the heart dr's at Children's Hospital in DC. Dr. Jonas is one of the front people in pediatric heart surgeries. Even though he doesn't do the cath...

Lots of things going on... we're in the process of moving and so if I haven't posted in awhile that's why.

Em went in on Dec 1st for angioplasty. After taking a lot of pictures - they decided it...

Emily not only has the spine issues, but her left hand/wrist aren't as strong and she tends to hold her thumb inside her hand a lot. Just wondered if anyone else's child had a similar problem. We...

Update - We finally got a letter from the dr explaining a few things.. would like to hear your opinion on osome things...

They said from the chest xray they measured a right 60-degree...

Well I'm not sure she'll qualify for the VEPTR procedure. She had pulmunary artresia and tetrology of fallot, which means she'll be having at least 2 more heart surgeries that we know of.. so...

Thanks for all the support. Today's appointment was LOOONG.. waiting that is...I personally wouldn't have cared, but it was 2 hours before I got in the back and it was another 1 1/2 before I got...

Thanks for all the information.. I'm definitely going in to this meeting with the dr feeling a lot better about what I'm expecting..

For those of you whom went to Shriners.. did you have to get a...

Thanks to both for the information. I looked up Shriners online. The only reason at the moment I'm staying with Children's is basically because it's closer and I want to hear what this dr says. I...

Carmell - just a quick question - at what time did your son have his first surgery on his back..

I have another appt this week with the other ortho dr, I'm hoping to find out more about her spine...

Thanks for the replies. I just needed to get everything out last night after the appointment. I'm sure we'll be fine, just every so often I get a momentary OMG moment. The term you used sounds...

I just found this forum. My daughter was diagnosed with cystic kidneys and a heart issue in utero. We didn't know about the scoliosis until after she was born. My daughter had heart surgery when...