Hi there to all, just taking a moment to introduce myself. My name is catherine, and I have a 5 year old daughter with spastic diplegia. I also have three sons aged 6, 3, and 19 months.
Poodle was diagnosed at 17 months. It took me a while to convince some one that something was amiss. Poodle was born at 36 weeks after a hard pregnancy, as i was very ill with crohns disease. She did not meet any of her milestones and our very incompetant mchn told me that I was being a paranoid. It took moving to a new town and one visit to a new mchn for the ball to start rolling resulting finally in a diagnosis.
Poodle is an amazing little girl that thank goodness, is able to walk, although a bit wonky, independantly, however she has to use a walker or walking sticks for longer distances. She is starting school next year and is so excited that she is already wearing a uniform to her transition days.
Poodle has had botox and phenol injections since she was 2, every 4-6 months, and in april this year she had an aductor release. the botox though has stopped working now and the docs at Royal children Hospital here in Oz are talking about a Selective Dorsal Rhizotomy. As of last friday we have been short listed for the procedure and heading to RCH on the 14th to discuss options. All goes according to plan we are looking at March for the op.
Anyway that's our story, I am looking forward to sharing stories and getting advice from you all especially those that have walked the path we are about to travel!!! We would love to hear from people that have had ian SDR done themselves or have children that have had it done. Ultimately the decision for surgery lies with us, and think i need to be better prepared.
Last edited by poodlesmum; 01-03-2011 at 06:36 AM.
Wow thats great you are able to still get that surgery. They stopped doing that surgery in Brisbane completely. A bit bummed as my son would have been a potential candidate. would love for you to post after the op to hear how you go with it all.
Hi there Catherine, glad you found the place. Have you had a look in the old posts about SDR? Or maybe you could title a post SDR to be more direct and get more responses.
I'm can only imagin the excitement yet trepidation you must be feeling. I hope you get some of the answers you're looking for on here. As you probably already know the Prof is one of the best surgeons in the world so Poodle is in good hands with him.
Hey Lea how are you going, Thanks heaps for letting me know about this site I am hoping that we can find out heaps of info so that we can go in fully armed to the next appointment. Good suggestion about changing the name i was right on to that Rose..lol.
You are right about Prof he is amazing. He did M's adductor release in April this year. The surgery is now definately going ahead, so now we have to do alot of baseline tests so they have an idea as to how well it has gone I suppose. The neurosurgeon that is apparently doing the op is Allison Wray, who was one of the ones that operated on Krishna and trisna the siamese twins, so that is encouraging, I was sure to ask the doc if she had done an SDR before though hahaha.
I hope Leacie is doing well we will have to catch up one time when I am in melb and we can compare notes
Karimsmum Hi how are you that is a bummer about not having the op up there, I will def keep you informed of our progress. Have you thought of contacting RCH to see if they will do it.
He too went through botox for a time. Was on oral baclofen. I researched SDR thinking it was a good option for him. In doing my research, I discovered Intrathecal Baclofen. I scheduled him for a trial. It worked. Proceeded to the implant surgery. I could hold my son for the first time in years without breaking a sweat. He could sit on the side of the bed a dangle. Dangle!!! His tone was drastically reduced. Bonus:reversible. Something a SDR is not. If it doesn't work, it never will.
Just wanted to throw another option out there. Best of luck!