RE: Re: Alison & Johannes

[Guest guest]

We’ll be thinking of you and lil J. next Weds! Please keep us posted.HRH From: infantile scoliosis treatment [mailto:infantile scoliosis treatment ] On Behalf Of AlisonSent: Wednesday, March 14, 2012 5:31 AMinfantile scoliosis treatment Subject: Re: Cole and the Crooked Flower! Many many thanks for this book Jenn (and her family). It arrived yesterday I read it to Johannes this morning for the first time. He then asked for it to be re-read another THREE times one after another. He pointed and pointed at the picture of Cole in cast - I don't think he's seen another child in cast (It made me realise I need to get more pictures!). I've given a copy to the nursery and they're delighted - they want to help Johannes to prepare for his first proper casting next week. It's not Mehta because the consultant isn't Mehta trained, but the frame and cast sound like yours do complete with holes at the front and back of the cast etc. It's been a long wait (you may remember that J was treated with bandages that hardened for months until I requested a second opinion at a different hospital). Many thanks for your help in looking at alternatives. When J had his last x-rays (finally got them in February), the consultant said his curves still hadn't changed so I decided to wait until our appt on March 21st rather than push to go to the US or whatever. I am sad that we wasted so much time - but glad that we start proper casting next week (Wed 21). He will be 22 months and I found his scoliosis at 8 months. I really wish I'd known then what I know now and pushed to go to a different hospital earlier. However, his curves have never changed (we've had different angles given to us because they all read these things differently, but when the consultants compare the x-rays they say it hasn't progressed). He is still S-shaped with top curve about 30-36 degrees and bottom curve 26-32 degrees (depending on who's measuring). The new consultant said that because his RVAD is less than 20, his curves may be of the type that resolve on their own(using Mehta's findings). But he said that at the end of the appt and wasn't proposing 'wait and see' or anything - he's happy to do the casting. I don't understand why they would suddenly resolve at this stage if they haven't resolved yet so I'm glad we're doing the casting. The arrival of the book is very timely to prepare him for next week. It's great to have a happy ending when talking about his treatment. It makes me feel better and more hopeful too :-)Best wishesAlison Link to our blog: http://infantilescoliosis-diary.blogspot.com/ >> I have to give a huge shout out to Jenn and her family for doing such a> remarkable job on the childrens book! I got mine last Thurs!! The topic> of a childrens book explaining ET w/ Mehta casting has come up many times> over the last decade and we're so excited to finally be able to provide> this to scoli kiddos everywhere. I could have never tackled this on my> own and if I did, it wouldnt be out for another 5 yrs...And, probably> wouldnt be as well done! The dedication Jenn and her family (and so many> others) have given to the ET cause is remarkable and ISOP is so very> grateful to every single one of you on CAST and every other scoli forum> that is spreading the word.> Cole and the Crooked Flower should be in every hospital waiting room> (ortho & Peds)on the planet. We should also get it to as many schools as> possible. Please think of everywhere we can circulate it and we'll find a> way to get it there!> Also, if theres anyone out there that speaks a language other than english> and would be willing to translate, please let us know.> PLEASE, Please share this wonderful book with everyone you know. Heres a> link to purchase:> http://shop.earthycrunchymama.com/collections/recently-added/products/cole-the-crooked-flower> THANK YOU Leggett family!> HRH>

[Guest guest]

GREAT news, Alison! Im so happy to hear this!Thanks for keeping us posted on lil J’s progress.HRH From: infantile scoliosis treatment [mailto:infantile scoliosis treatment ] On Behalf Of AlisonSent: Tuesday, May 08, 2012 4:27 AMinfantile scoliosis treatment Subject: Re: Anyone from the UK on here? HiI'm from the UK (Coventry - where are you?). My son was being treated at Birmingham Royal Orthopaedic Hospital with a different kind of cast. I was unhappy and asked to be transferred to Oxford where they do a similar kind of casting to Mehta. It isn't Mehta (the consultant isn't trained by Mehta) but it's v similar, on the right frame, has holes in the front and back etc. J's curves have improved dramatically since the first proper casting in March (it took till he was 22 months to get the proper casting, despite diagnosis at 8 months...). His curves are now 19 degrees top and bottom of the curve (were 36 and 27). I'm about to go on holiday for a week, so can't write much at the mo, but am v happy to correspond about this.SAUK the charity have details of other parents you can contact in the UK. Through them I found parents who had had similar casting (but not Mehta). I believe Great Ormond Street, Middlesex and Liverpool Alder Hey all do similar casting.Take careAlison >> Hi,> I am looking for advice on behalf of someone else. Wondering if there is anyone from the UK on here? Or who knows of which doctors cast in the UK?>