Hello, New Here!!

[MegansMom]

Hello all, I am new to this forum, I post always on the CN forum....
My name is Tracy, and my daughter Megan is 10 1/2 yrs old and has CP due to a birth injury where she was deprived of oxygen for approx 30 mins....She is non verbal, non mobile, seizure disorder, cortical visual impairment, sleep apnea and scoliosis.....At Meggies last ortho visit her curve was at 48 without her TLSO brace and 38 with it....We go back on May 9th and see if it has progressed and if it has gotten much worse that horrible surgery word will be coming....It is the one surgery I fear so much......I was just curious if you all could give me some pointers here.....I am just so scared about this.....God is great, and if he takes us to it, he will see us thru it.....It is just so darn scary......
Tracy

[Alison]

Hi Tracy

Meg looks like an absolute angel :-),

There's a mum on here (Lorrie) who's daughter has severe Cerebral Palsy and there currently on the waiting list for surgery; she'll probably be a good source of pointers

My best pointers would be to ask lots and lots of questions no matter how strange or insignificant they might feel , even perhaps start making a list and put it on the fridge and you can all add questions (you, your husband and your kids) to ask the surgeon.

To have complete and absolute trust in Meg's surgeon and ultimately feel at ease with him/her.

Alison

[Lura]

Hi Tracy!

My name is Lura, and my son Alex, a precious Down syndrome child, had scoliosis surgery March 28. Alex is 12, and he came out of the surgery beautifully! Fused from T2-L4 or 14 vertebrae. I, too, was terrified mostly because Alex couldn't understand what was to be done to him. The way he has come through this can only be explained by God talking to him, because I sure didn't have the words! I told myself over and over that there is a reason we have these children and a reason they must endure what they must. Maybe to touch a life, or teach a lesson, whatever the reason, God carries them through! You said your husband is Scott and that he is wonderful, well I am engaged to a beautiful man who is also named Scott, go figure!!! I can assure you, from one mom of a special needs child to another, your daughter will amaze you on this journey!

All the best to you. Til next time,

Lura

[nikyergen]

Tracy,
Megan is absolutely beautiful. And what handsome sons too. I wish I could help you more, but I can do a lot of praying for you. Lura knows first hand about what you are going through. Carmell is a pretty good hand at some of this stuff that you may have to endure, she's endured spine surgeries for her son Braydon every six months since he was an infant. Hopefully, she will see your post too. She had a great idea for us to get steri-strips off my daughters back. And it worked. Another good one is Lorrie, her daughter is Genevieve. She is getting ready for the surgery experience. These mom's, along with others that I am not familiar with, can give you more tips that I can even think of.

Ask lots of questions here and with your doctors. If you thought of it to ask, it isn't a silly question. Ask, ask, ask.

Keep us update on Megan.

Lots of prayers for your family.

'til later,
Nikki

[lorrie]

Hi Tracy

Good to meet you. We're waiting for surgery at the moment and I quite agree - this is a scary one.
I don't want to depress you but I do think you need to be prepared for surgery at some time: our consultant told me that, although idiopathic scoliosis can sometimes stop progressing if it can be controlled enough till a youngster has stopped growing, this is not the way it works with cerebral palsy. He reckoned that, brace or no brace, it would continue to get worse as Genevieve got older until it would severely compromise her health.
The advantage of having surgery way before that point is that the spine is still relatively flexible and you can get a much better result with less traumatic surgery.
I see Megan is only 101/2 so she will still have her major growth spurt to go. I would have thought it likely that they would want to put off surgery till after that, if at all feasible - though it might not be if she's progressing very fast. Genevieve is seventeen so has done most of her growing.
The problem we've had is trying to get her to understand what's going to happen. It's taken lots of repetion and pictures and a model spine. I don't know what Megan's level of understanding is but I would advise you to try to make it all as clear to her as possible. I tend to think that, if you keep things from youngsters, they just stop trusting you and then you really can't help them through it.
Genevieve can't cope with all the technicalities (not sure I can!!) but she does now know that her back needs mending and it will be better afterwards although it's going to be horrible and scary having it done.
Has Megan had much surgery already?
One positive thing (nice to have one anyway), my consultant did reckon that kids with all these issues did actually tend to recover faster and cope better with the surgery than 'normal' youngsters - perhaps because they are so used to having things like physio and hospital treatment.
I seem to have written you an essay so I'd better stop now.
Let us know how you get on.
Best wishes,
Lorrie

[Carmell]

Hi Tracy,

Welcome to the board. I just wanted to echo what has already been said - that this is a great place to ask questions and share experiences. Remember that every patient is different, especially these kids with multiple medical issues going on.

I do know of a few CP kids who have had rod placement surgery. Did your surgeon mention whether or not Megan may need to continue wearing a brace after the fusion/rod surgery? Sometimes with CP the soft tissue just doesn't want to re-align with the new position of the spine. This can cause more stress and tension on the fused area. I also agree with the others who said that you want to make sure surgery sooner than later is the best option. A 48 degree curve in one person can be tolerated for a long time, yet in another person, it may need surgical intervention sooner than later.

Please be sure to ask lots of questions that are specific to Megan. Take someone with you (if possible) to help you remember the information. There's lots out there. I hope everything goes well for both of you.

My best,

[MegansMom]

Thank you all so much.....
Lorrie,
Megan has undergone 2 hip surgeries, hamstring surgeries, splat surgery, tubes, adenoids, strabismus but have all went GREAT!!!! Our ortho is wonderful, I have 100 % trust in him, we have been seeing him for 10 yrs and he specializes in neuromotor disorders and spinal surgeries, so he has done numerous and has the bedside manner of a saint.....Besides the surgery itself one of my greatest fears is the thought of her being in pain for ever after the surgery and regressing in all the milestones she has achieved....She seems to be in no pain at this time, but I can tell just in the last 6 mos that the curve has gotten worse.....We will see what he says in a few weeks....I will keep you all posted.......I feel so lucky to have my family at Braintalk and now I have all you guys as my other family....
Thanks and will talk to you soon.
Tracy