Questions for appointments, and thoughts to approach.

[Guest guest]

Hi Alison,I know that you have already had some responses, but I thought I'd share our story with you.Kylie was diagnosed in August 2010 at age 17 months with "severe dorsal scoliosis" with her curve being over 45 degrees at that time. We live in Ontario, Canada where referrals take time. I know now, that for casting, time is not your friend when trying to get treatment started but I'm thankful for that time anyway as it gave me time to research, ask questions, connect with other parents etc. We finally had our MRI in January (after being on an "emergency" list for 2 months!) and then started casting in May. It was a long process and I was a bit frustrated as Kylie had passed that optimal window to be casted.She was casted May 18th without any kind of shirt underneath, wore that cast until June 20th, was scheduled to be recasted on June 21st. When we removed her cast (here at home) we found that she had some skin irritation and I was a bit concerned with that. Due to an emergency the Doc had to attend to, her casting was put off. I took this time to pursue the shirts and the Dr. Agreed. (He's INCREDIBLE to work with.) We were then rescheduled for July 5th but the shirt did not arrive to Canada in time. I had a very hard time making a decision, but opted to delay casting without the shirt. Maybe now, I would have casted her, since I know I could put the shirt on once it arrived but not having any experience with the shirt, this didn't cross my mind as an option. Because of the Dr.'s schedule and the summer, we ended up not rescheduling her until August 31st. We used the time to enjoy the summer as a family. This decision would not work for everyone, but it worked for us.August 31st she was re-casted in her 2nd cast with a Knit rite shirt. And by this time, we had also received a "cast cooler" both the shirt and the cast cooler were fantastic for dealing with the "itchies". October 5, her cast was removed, she was in a wedding on October 9th and then re-casted on October 11th. She is now down to 15 degrees in cast. Her highest measurement was at 49. I've attached photos of the progress.Our dr. is not trained by Dr. Mehta, but has attended some conferences, workshops etc, and adheres to her casting principles. I did at one time contemplate pursuing a referral to a Mehta trained doctor, but I'm ecstatic by the results we have so far and we've decided to stay with our Dr. who is excellent at hearing our concerns, he welcomes my ideas (which most come from this list) and we are seeing progress. Again, this approach wont work for everyone, but I am glad that we gave him a chance. Staying close to home (2 hours) has allowed us to sleep in our own bed every time except day one of the first casting. We have a dr. that listens and is open to ideas and learning. I believe that this is why we have achieved the results that we have. I know that there are many that feel strongly that Dr. Mehta's techniques are the only way to see success, however, I see it just a little differently. I believe that she has been a pioneer in this field and has opened the minds of professionals to this technique and approach. I'm grateful for the work that she did, but I also think that our Dr. has been successful at reading her work, and applying the principals with great success.He hasn't done many casts, but he clearly is brilliant and willing to learn from other professionals success (this definitely includes Mehta!) They use a "make-shift table" which concerned me, but I can't argue with the results that I'm seeing. Obviously Kylie's spine is not stiff, and is accepting to treatment, which helps but I think it is a combination of MANY things, including our Dr.'s willingness to have an open mind. He has ALWAYS been open to any of my thoughts and in fact, none of them are new to him. He hasn't been surprised by anything I have brought up so he's clearly talking to and reading the work of other professionals. I've attached Kylie's 1st xray and the latest. It still brings tears to my eyes to see the difference in only three procedures and at that time a total of less than 12 weeks in cast!Becky, Mom to Kylie now 33 months. Waiting for a casting date for cast #4.

On 2011-11-30, at 8:24 AM, Alison Bell wrote:

Hi

A brief recap of our story so far:

My son, Johannes, was diagnosed at 8 months with scoliosis. He is now 19 months. MRI scan and x rays have shown it is idiopathic with no structural problems. His spine is an S shape (picture attached) with top curve about 30-32 degrees (though one consultant said 36 degrees) and the lower one about 26 degrees. There is about 10-12* RVAD and 10* rotation. I've read that the usual RVAD rule (most curves below 20* are the ones that resolve) doesn't apply to S shaped curv

es, so using the RVAD isn't necessarily helpful in determining whether it's progressive either.

He is being treated at Birmingham Royal Orthopaedic Hosptial (UK) and since June has had "soft" casts applied every 2 weeks (a bandage that hardens after about 2 minutes, so he's wrapped up and then the plasterer applies pressure on the curve until it hardens). His curve has not progressed since June, but it also has made *no* progress (one consultant dragged in from retirement to help the waiting list said it had, but the main consultant my son is under has now said that man was wrong)