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Thread: Autistic teen with rapidly progressive scoliosis

  1. #1
    Join Date
    Mar 2007
    Posts
    9

    Autistic teen with rapidly progressive scoliosis

    Hello,

    I'm new to this wonderful forum. Our 14.11 y/o son MJ has autism, a severe lifelong neurodevelopmental disability which primarily affects their ability to communicate, play, make friends, and handle the environment. Over the past 9 months MJ has developed a rapidly progressive scoliosis condition. MJ also has colitis and now weighs 102.5 lbs! He is verbal, and considered high-functioning. He understands pretty much what is going on.

    Bracing wasn't recommended by a previous pediatric orthopedist. Rather, a wait and see approach was recommended for six months. Maybe he was concerned MJ would not tolerate wearing a brace. Six months later, we learned the curve had more than doubled. We were told it was too late to wear a brace and surgery was recommended.

    While seeking a second opinion, we found a pediatric orthopedic surgeon who specializes in scoliosis and accepts our insurance. He really connects with MJ, supports our family and has good chemistry with us. The hospital staff also treats him with dignity and respect. This is a very important factor for us.

    A recent MRI which MJ was put to sleep for, finds the curve well over 50 degrees. MJ is scheduled to have surgery on June 20th at Mount Sinai Hospital in NY. The surgery will be a "fusion with instrumentation from T-4 to L-2, perhaps shorter." Bending films find him to be "extremely flexible." His surgeon explained to him a need for four weeks of Procrit shots to help prepare his body for surgery, and for pain meds afterwards he can self-manage by pushing a button. The first shot will be on Tues.

    MJ asked a friend (also on the autism spectrum) to draw a self-portrait of him defeating scoliosis. He told his friend what to draw and which words to use. MJ asked me to give the cartoon to his doctor -- before the surgery. He can clearly visualize his "defeat over scoliosis" and wants his doctor to visualize it too. MJ seems to be handling this so far with humor and courage. He travels over 120 miles to/from school daily (1 1/2 hr.) each way. I know he's looking forward to having no summer school and possibly beyond this year. I'm not sure what else to tell him about the recovery process. As we get closer to the 20th he'll probably get more nervous. Is it possible for him to have a mild sedative the night before and morning before going into OR? Our family, including two of his three adult sisters (took vacation time) and will stay at the hospital's guest residence for the week. I plan to be with MJ as much as possible. I'm sure my husband will too.

    We are four weeks away from the big event. Personally, I have good days where I am counting our blessings, feeling confident, grateful there is treatment for this disease, arranging for supports and services. Then there are bad days when I am filled with uncertainty and panic. My husband and daughters seem to be more at peace with all this. Although Crystal did say her heart dropped after a trip to Wal-Mart to buy items for the hospital/home.

    What I really need is your support, suggestions or any advice you could give me to help us prepare MJ for surgery and during the recovery process. How did you cope while your child was in surgery, and afterwards. I've read the Preparing For Surgery suggestions. We're using this helpful guide as our checklist. I'm sharing what I learn and experience on a new blog, www.autism-and-scoliosis.blogspot.com. Hopefully other parents of autistic children needing surgery can be helped by our story. Thank you for reading my long post!

    Wanda
    A Child With Autism Can Get Their Needs Met...
    From Preschool To Adult Services
    www.child-autism-parent-cafe.com
    Practical ways to help, plan and manage daily living with autism
    Last edited by wbtori; 05-28-2007 at 05:13 PM.

  2. #2
    Join Date
    Jan 2007
    Location
    new jersey
    Posts
    154
    In school I did a project on autism. It's actually really sad.

    I'll pray for MJ and your family.

    Best of luck on the 20th!
    i have scoliosis. third boston brace. (:

  3. #3
    Join Date
    Oct 2005
    Posts
    178
    You and your husband sound like really AWESOME parents. The fact that you can set up your own blog to share your experiences to help others, shows that you have really come to terms with what's going on and are moving forward. So far as the medication goes, it mainly depends on two things, first being any other meds that may interact negatively with any sedative. The other being how comfortable your doctor is with prescribing something for MJ. There's a good bet that he will get what they call "pre-op meds" the morning of the surgery to calm him down prior to going to the operating room. From what you've said, I'm wondering who's going to need the sedative, him, or you. (LOL) It sounds as if your son is already prepared for the surgery. I wish you all the best and will keep you in my thoughts.

  4. #4
    Join Date
    Apr 2007
    Location
    Seattle, WA
    Posts
    385
    It sounds like you are doing a great job helping your son deal with this. You do seem like an incredible parent, so positive & proactive. You & your situation are inspiring me to try to stop feeling sorry for myself & for the fact that my son has congenital scoliosis. I'm aware of many of the issues involved with autism & the challenge to connect with an autistic person & his/her feelings. The way you've been planning ahead & helping him, or letting others help him, deal with this, such as by drawing his feelings seems so valuable.

    Other than what is becoming an increasingly obvious spinal curvature, my son has had a relatively "normal" life. He is incredibly bright & imaginative & healthy. But he doesn't seem to want to deal with his upcoming surgery in a directly verbal way. I'm the one who needs the most support now & maybe in your family it's you who needs it most too. So, for what it's worth & wherever you are, you have my support.

    Keep up the great work!
    Laurie

  5. #5
    Join Date
    Mar 2007
    Posts
    9
    Thanks so much for your replies and for your support...!

    Yesterday I needed a shoulder so badly, and couldn't find my way back here to read your replies. Today, I found my way back with no problem. The UPS guy delivered a package. He usually fires lots of questions at me. Instead of doing my usual dodge, I found myself telling him about MJ's upcoming surgery. My husband became annoyed and said what are you telling the UPS guy for? I don't know. The surgery was on my mind and I just found myself sharing...

    Yes, I do think that besides MJ I'm the one who needs the most support around here. lol I've read many of the posts here and then share them with my family. There's been lots of planning in a short time, and after a few Wal-Mart trips things are starting to fall into place just as his doctor's secretary promised it would. I've begun packing me and MJ's bags. One for ICU and another for when he gets to his room. I'm such a bad packer. Thank God for the 'lists of items to bring' posted here.

    Wow, it's June 1st already! The days ahead are filled with fun things for MJ to do. Yesterday a picnic with a new friends group in a beautiful park, called Sally's Dream ( a park for all children). Tomorrow Shrek 3, Sunday a children's program at a new church, Monday Playland, next Friday a teen dance.

    Laurie, I understand how bewildering it can be when your son doesn't tell you what's on his mind. On Tues. MJ had his first Procrit shot series. He refused to talk or answer our questions from the time he woke up until hours later after the shot. He was relieved "it only hurt a little." He did really well -- no reaction. Then we went to the diner for lunch. Next Thursday is the 2nd of four shots. The last one will be given right before surgery. We got a call from our school district yesterday. They will purchase the low-end communication device his speech therapist recommended for MJ in time for the hospital. He has a tendency to 'shut-down' whenever he's sick, stressed or hurting. Hopefully this'll help especially for survival language like I'm hungry, I'm bored, I need ___. We're practicing using a walkie-talkie -- funny . We bought a baby monitor if that doesn't work the first few weeks home.

    The hospital bed, bed tray, raised toilet seat, & shower seat gets delivered on the 15th. We'll leave for the hospital's guest residence hotel on the 19th. I'm wondering if having the hospital bed early will prepare MJ for his new bed at the hospital, or if it may scare him. I could reschedule delivery until after he's discharged and gets home. Any thoughts on this?

    Thanks again... I'm so grateful a link to this forum was shared with me by another parent.

    Wanda

  6. #6
    Join Date
    Mar 2007
    Posts
    9

    Surgery is successful and we're home!

    Hello,

    I'm thrilled to share that MJ's 7 hour surgery by Dr. Benjamin D. Roye on 6/20 at Mt. Sinai Medical Center in NYC is "successful with 100% correction." His thoracic curve was in the high 50s, progressing further with right shoulder higher than left and rib hump. The compensatory curve was in the 20s. The treatment plan originally was T4-L2. Dr. Roye said his thoracic curve was so flexible and easy to correct the compensatory curve straightened perfectly he decided to fuse at L1 vs. L2. The waiting was hard but not as bad as anticipated. MJ did not need any blood transfusions during or after surgery. There were no throat or chest tubes. But significant short-term facial swelling.

    After a four day hospital stay, we arrived yesterday afternoon exhausted and happy to be back home. 'Everyone who wants to go home tomorrow raise your hands.' And we'd all raise our hands each time he said it. Yesterday MJ could barely walk with two of us assisting him. Today he's walking alone -- tall and straight -- whenever he feels like it. He came downstairs with his dad's help three times. All in all MJ's doing well despite some pain which is being managed with Pergocet/Tylenol. His incision appears to be healing nicely. I'm surprised at how long, thin and straight it is. I understand now why some people admire their scoli scars. Do I need another scoliosis surgery Mommy? No, you don't. Then I want to thank Dr. Roye for giving me a straight back.

    Thank you for your support and well wishes. They are deeply appreciated!

    Wanda - MJ's mom
    14 y/o, autistic
    T4-L1 surgery 6/20/07
    "100 successful"
    Last edited by wbtori; 06-25-2007 at 10:14 PM.

  7. #7
    Join Date
    Apr 2007
    Location
    Seattle, WA
    Posts
    385

    That's great!

    Congratulations on a successful surgery. I'm glad to hear that MJ is well on the road to recovery & feeling well enough to be up & about more & more each day. It must be such a relief to have the surgery over with. I can't wait to have my son's surgery day be over. The anxiety is getting overwhelming & I find myself alternating between tears, anger, & anxiety/worry many hours of the day when my kids are at school. I'm just trying to keep as busy as possible. It's always great to hear of good outcomes though - they help keep my positive energy alive & well too. Thanks for letting us know how it went.

    Laurie
    Laurie

    Mother of Alexander & Zachary:
    Alex is 16 years old and in the 11th grade. He has congenital scoliosis due to a hemivertebrae at T10. Wore a TLSO brace for 3 1/2 years. Pre-op curves were T45 & L65; curves post-op are approx. T31 & L34. Had a posterior spinal fusion from T8 to L3 on 7/12/07 at age 12. Doing great now in so many ways, but still working on improving posture.
    Zach is 13 years old and very energetic.

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