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Old 19th February 2014, 03:36 AM
elievans6 elievans6 is offline
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Join Date: Feb 2014
Posts: 2
Default New here, would love some help

Hello Everyone, my name's Elizabeth. I was hoping to get some experiences or advice concerning the fusion & rod surgery. A few months ago my daughter, Julia's, spine changed drastically. She's 12yrs old with neuromuscular sc. The then, slight S curve, is now 75 degrees upper back and 45 degrees lower. Her orthopedic dr. is unable to do the surgery and is sending a referral to a dr. she knows at Children's H. They're taking another x-ray to see if there's been any change within the last few months. But I know surgery is inevitable and we have about a year before her spine starts losing it's flexibility. Honestly, this was no easy decision to make. The more I learned about the positives and negatives about the procedure, the more undecided I became. So let me tell ya a little bit about my kiddo. Her 1st year she was diagnosed with severe periventricular leukomalasia (PVL) and intractable seizures. She depends on total care. She doesn't speak, but does vocalize and has the most contagious laugh! She's been on the keto diet since she was 3 for her seizures. All of these components has equalled to her low bone density but we've been working with an endocrinologist for this. She's had a couple of surgery's, feeding tube placement and nissan fundoplication, and she bounced back wonderfully. I'm wondering from you all how you managed to care for your loved one during recovery. Julia weighs 80lbs and like I said needs total care. I unfortunately don't get help from my family, and I'm a single mom of 4. Her father can only help on the weekends he's not working. I do have a friend, she's also Julia's hired caregiver, who's been here for Julia and plans on being here as much as possible through this process. Any tips or advice is very welcome. Thanks so much

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Old 19th February 2014, 11:09 AM
burdle burdle is offline
Join Date: Jul 2009
Location: Sussex
Posts: 702
Default Re: New here, would love some help


Just wanted to say what an inspirational mum you sound! . I cannot offer advice but someone will be along very soon I am sure who can- there are lots of good people here and they have tremendous knowledge and experience.

Sending love to you and your daughter!

Burdle -
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Old 19th February 2014, 07:21 PM
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GillyG GillyG is offline
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Join Date: Jan 1970
Location: Sheffield, UK
Posts: 16,217
Default Re: New here, would love some help

Hello there Elizabeth

I'm the one with scoliosis in my family so I have no experience of what it's like caring for a child who is awaiting surgery. I'm glad you've joined us though because we have plenty of members who will be able to share their experience and help you through this difficult time. She has one very important thing in her favour though - having you as her mum!
Me, a Mod? Nah ... I'll always be a rocker
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Old 20th February 2014, 02:35 AM
elievans6 elievans6 is offline
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Join Date: Feb 2014
Posts: 2
Default Re: New here, would love some help

Thank you both for your support, I really do appreciate it! It helps so much to be a part of a group that understands all the physical and emotional ups and downs that we must face. Your support gives me that extra boost in these trying times.
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Old 20th February 2014, 01:55 PM
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tonibunny tonibunny is offline
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Join Date: Jan 1970
Posts: 15,399
Default Re: New here, would love some help

Hi Elizabeth, welcome to SSO

My gosh you have a lot to deal with, you sound like a pretty awesome mum! We are all here for you and will hopefully be able to support you as your daughter goes through this surgery. I'm not sure we have any members with kids who have similar issues to your daughter, but there are plenty of us who are either parents or who have had surgery ourselves. I myself had surgery at 10 for a 76 degree curve, but with no other issues I bounced through it. Hopefully your daughter will come through just fine too- hospitals are great at managing post-op pain in children, in fact I can't remember being in any pain following those surgeries when I was 10, just some stiffness when I got up for the first time afterwards

Lots of love to you and your daughter,

Toni xx
37 years old, diagnosed with infantile idiopathic scoliosis at 6 months old with curves of 62(T) and 40(L) degrees. Casting and Milwaukee braces until surgery at 10 - ant release/pos fusion T1-T12, halo traction. Post op cast and then TLSO. Further surgery at 18 (ant release/pos fusion extended to L3 to include lumbar curve, costoplasty) and 25 (another costoplasty). Fusion extended to L4 at 33 (XLIF with 4 pedicle screws and two short rods). Pre-op curves: 76(T) and 70(L). Post-op curves: 45(T) and 35(L). Diagnosed with Ehlers-Danlos Syndrome aged 34; scoliosis almost certainly due to this rather than being idiopathic.
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