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lenacourt · Joined: 15 Jan 2008 Posts: 4801 Location: Leicestershire

We have just got back from Olivia's meeting at Coventry.

They held a conference with pediatric orthopedic surgeons, adult orthopedic surgeons and other medical proffessionals. There was a power point presentation of Olivia's case, with images from xrays, CT scans and MRI scans detailing Olivia's condition and her EDS, with all the other problems she has. They discussed the implications of further hip surgery, with regards to her EDS and the effects immobilising Olivia will have on her other joints and the outcome seems to be pointing towards shelving surgery and seeing if the lycra suit will keep Olivia's hips in a good position, as the MRI showed there is a good amount of cartiledge around the shallow sockets that could ossify and turn into bone, therefore increasing the depth and size of the sockets, removing the need for Pelvic and Femoral Osteotomies! The effects of the lycra suit have greatly improved the prognosis for Olivia's hips and could rule out further surgery all together! If things go to plan, the lycra suit will keep Olivia's hips in a very good position and the cartiledge will ossify and turn to bone. With her legs straight, it is clear on the xrays that although the angles are good, the sockets are insufficent in size and the femoral head is 2 thirds out of the socket, but in an abducted position, they sit nicely within the sockets. Therefore, the plan is to wait to see if wearing the lycra suit to prevent dislocations will help the cartiledge to ossify, inprove the size of the sockets and completely remove the need for surgery!

We couldn't have hoped for a better outcome! Something as simple as her lycra suit could prevent Olivia from needing major reconstructive hip surgery now and in the future! Surely, the NHS cannot argue there is no supporting evidence after this! The team are going to write up documentation to support the use of Lycra suits in cases like Olivia's!

We are so relieved and so happy, obviously this all needs to be finalised and confirmed in writing, but the opinion today seems to be that Olivia will not be having her hip surgery in September, thanks to her lycra suit!!!!!!!!

Very Happy

_________________
Olivia 26/9/06 Bi-lat. 2closed/1open reduction/11mnths in cast pelvic & fem ost's due soon
http://www.caringbridge.org/visit/oliviajane

darenandsunneva · Joined: 11 May 2010 Posts: 80 Location: Lincoln, UK

Wonderful news.........what every parent wants to hear xx
_________________
Darcie Thorpe
CDH diagnosed at 12 months
Closed Reduction 07 June 2010
DLA granted 08/07/10

Hazel1403 · Joined: 26 Nov 2009 Posts: 118 Location: West Sussex

That is great news Lena - So glad that the suit seems to be helping. Thank god for the lions club. x
_________________
Lexie 21/12/08
Traction 11/01/10 til 18/01/10
Closed reduction and spica 18/01/10
1st Spica change 9/3/10
2nd Spica change to broomsticks 13/04/10

elly · Joined: 30 Jul 2008 Posts: 78

Awh Lena that is just fantastic!!!!!!!!!

So pleased Olivia and yourself have received some well deserved news

Elly

penny · Posted: Wed Jul 28, 2010 5:44 pm Post subject:

That is certainly some news to smile about at last!

Looks like Lily will have surgery on 24th August so not long and I am going to mention the lycra suit to Prof. Clarke to see about he thinks about them.

Penny x
_________________
Lily-Mae 31/01/05 Prof Clarke
Bi-Lateral CDH
Left open reduction x2
Left Pelvic Osteotomy
Awaiting Femoral Osteotomy

TAYL5980 · Posted: Thu Jul 29, 2010 7:25 am Post subject:

Brilliant news Lena! Mr. Green

Really happy that the lycra suit is helping Olivia too! I keep reading that first news story over and over again because it's so nice! Makes me all teary eyed! Smile

_________________

rumor · Joined: 02 Jul 2008 Posts: 132 Location: galway ireland

Aww Lena that is super duper news...yay for Lycra suits!!!
_________________
Twin girls born 24/1/08
Closed reduction 20/6/08,casts for 18 weeks-Failed
Abigail repeat closed reduction 5/11/08
Both twins Brace Sept 09
Abigail Pelvic Osteotomy 23/03/10
Emily Open Reduction 20/04/10

LisaS · Joined: 09 Jun 2009 Posts: 136 Location: Chelmsford

best news that I have heard in ages Very Happy

Lisa
x
_________________
Emma dob 18/1/04
Diagnosed 20/5/09 - age 5
Pelvic & femoral osteotomies 9/11/09 (Mr Bradish GOSH)
Check up 27/9/10 - metalwork to be removed?

Kirsty+Annika · Joined: 06 Mar 2010 Posts: 49 Location: Southampton

That is amazing news Lena - really pleased for you and Olivia of course!!

Kirsty x

DMM35 · Joined: 19 Jun 2008 Posts: 735 Location: Cheshire

Great news! xx
_________________
Emily22/5/08 DDH-5 days(bi-lat).Pavlick failed. Medial open reduction -27/9/08 (Alder Hey).Spica to brace 20/1/09 Brace free 20/5/09!

djshakey · Joined: 22 Jul 2009 Posts: 98 Location: Buckinghamshire, UK

That's fab news Lena. Fingers crossed for you.

Andy, Sandy & Daisy x

katyl · Joined: 04 Aug 2009 Posts: 154 Location: Edinburgh

Wow, great news! Smile

Katy x
_________________
Sophie born 19/06/08
DDH Left Hip, Open Reduction 20/07/09, Derotation Osteotomy 24/08/09
Cast off 07/10/09

Speno · Joined: 30 Jun 2010 Posts: 16 Location: York

Brilliant news! Just goes to show that you really have to push for things sometimes, as I seem to remember reading that it was you that pushed for the lycra in the first place!

Best of luck to you both

x

lenacourt · Joined: 15 Jan 2008 Posts: 4801 Location: Leicestershire

I'm just so confused...

why do they always lay the difficult decisions on the parents? Been there, done that, living with the torture of the "what if's" The dilema is...

After the conference last week the general gist was no surgery for Olivia because the lycra suit will hold the hips and the cartiledge will turn to bone and make the sockets bigger...

Now I've had a phone call... after we left there was further discussion, whilst half the room agreed on what was said - no surgery - the other half of the room think it would be beneficial to still do femoral osteotomies to improve the postition of Olivia's thigh bones and how they sit in the sockets, which means the sockets will then develop better and cause less problems later in life....

So, do we leave it and see if there are problems later in life or put Olivia through having her thigh bones broken and reshaped, metal work put in to hold them on the off chance that there may be problems later in life?????

I don't know! we have until September to make a decision!

Why is nothing ever easy? Confused

_________________
Olivia 26/9/06 Bi-lat. 2closed/1open reduction/11mnths in cast pelvic & fem ost's due soon
http://www.caringbridge.org/visit/oliviajane

wendyk · Joined: 19 Mar 2008 Posts: 34 Location: Midlands

Lena,

that's superb and wonderful news- I am so happy for you!!!
Wow, Olivia is very special medical example for future children as well as being a very special little girl anyhow. What a fantastic result with such a simple treatment as a lycra suit.

We had baby Lara on 7th June and her hips were scanned a couple of weeks ago- ALL CLEAR! We were so very happy- nothing needed to be done, we were in happy shock and opened some fizz to celebrate! She is a little angel and the exact replica of Jenna at this age, they're going to be like 2 peas out of a pod.

Jenna meanwhile is in BCH next week to decide whether she'll need femeral osteotomy in december or to leave it another year....I'll keep you posted.

Wendy
xx
_________________
Jenna 13/05/07. DDH dx at birth.
Pavlik 5 wks-fail.
Traction closed red 6wks spica-fail. Open red 6 wks spica-fail. Traction, open red aborted (complications) broken femur 6 wks spica. Pelvic ost '09. Femoral ost expected 2010. Birmingham CH, Mr Bache