Announcement

Collapse
No announcement yet.

i'm new - and daughter scheduled for surgery

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • i'm new - and daughter scheduled for surgery

    hi, i'm new to this site. sharing my story w/you about my daughter who will be 10 in april. not only was she born w/idiopathic scoliosis (which was diagnosed at 15 months) she also was born w/a rare, incurable skin condition called epidermoylsis bullosa or eb. more info on eb, www.debra.org. getting back to scoliosis, our last appt 12/10/04 showed the s curve had progressed from (upper) 39 to 51 and (lower) 36 to 48. looking at her you wouldn't see quite see it. the curve has started to press into the lungs, which she feels at times, she has experience back pain. she does display a hump (lack of better word) on the right side of her back. her clothes are very partial to one side of her body and her torso has twisted. her right side of the chest is lower than the left. we were told that surgery at this point is the only corrective measure. she is scheduled for april 13. she will be 10 in april. she would be receiving 2 titanium rods along side the spine. w/her skin condition, the whole surgery issue makes it very difficult. the form of eb gabriella has is the mild form but the more severe subtype. simple short words, she is missing protein in the first layer of her skin. any trauma or friction peels her skin right off. she blisters very easily as this is the way for the skin to protect itself. we have to lance the blisters w/a sterile needle and at times bandage to promote healing and prevent infection. one out of every 50,000 are born w/eb. she's a tough cookie but i beside myself that she has to have the surgery. thoughts?
    sylvia (mom) and dad w/o eb and no family history.

  • #2
    Sylvia....Where do I start? Make sure you are dealing with a pediatric doctor who specializes in the spine; make sure he is aware of her eb, because I'm sure this will need to be considered during surgery; be sure to ask if they will be doing "growing rods" since at the age of 10, I'm sure she isn't done growing yet.

    I'm sure you will get more advice/suggestions as you've come to the right place for help. Welcome!

    Mary Lou

    Comment


    • #3
      Hi Sylvia,

      Danell/Connie mentioned your daughter on another lists I belong to. I hope you don't mind - she is very concerned about you and your daughter. Typically I would suggest seeing a Ped. Ortho who specializes in adjustable rod procedures, but with her EB condition, I understand very well that having only ONE surgery is more than enough. Make sure they are recommending the best procedure that will have the least amount of risk of future problems. Sometimes a posterior-only surgery done on someone who isn't fully grown will cause a crankshaft problem later in life - crankshaft means that the front part of the spine grows while the back part (that was fused) does not. Make sure to discuss ALL options with the ortho so you have the best care possible. Make sure your ortho has done many SUCCESSFUL surgeries like this on 10yr old girls. My son is 9yrs old (will be 10 in May) and is very small. He is 48 inches tall and weighs 46 pounds. He has adjustable titanium rods which require surgery every 6 months to lengthen the rods. I can imagine it would be hard on your daughter to have surgery even once, let alone multiple times. I don't have many suggestions, but please know we care. Please keep us posted.
      Carmell
      mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

      Comment


      • #4
        thanks guys......marylou, we wouldn't be doing the growing rods because of her skin. multiple surgeries are to risky w/gabby's eb. we are w/a pediatric surgeon who specializes in spine and tumors. he's done numerous surgeries. infact, he just corrected scoliosis on a 12 year old from liberia. i feel very comfortable and confident in the doctors. i guess it's a combo w/surgery and the skin issues we will be dealing with. not only is gabby's eb external, it is also orally, esophagus (sp?), too. and docs are very aware of eb. the derm at chop is also our derm doc which will be on the team. and carmell, wow, all your kids of spinal problems? it was briefly explained where the rod would going according to the curve. 2-3 inches at top 2-3 below rods can still grow. this will be discussed in more detail at our meeting in march.

        thanks all for your concern. i feel like i'm not the only one.

        Comment

        Working...
        X