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Thread: Update and Question

  1. #1
    Join Date
    Jul 2006
    Location
    Pennsylvania
    Posts
    21

    Update and Question

    Lots of things going on... we're in the process of moving and so if I haven't posted in awhile that's why.

    Em went in on Dec 1st for angioplasty. After taking a lot of pictures - they decided it would be in her best interest to have a stent put in. Well they tried a few times, but every time they got close, her blood pressure and O2 stats dropped - so the ended up doing the angioplasty.

    Now - we're in wait mode to see what will happen next :

    1) In a couple of months they try the stent again (best case)
    2) In a couple of months they do open heart surgery to replace the conduit

    #2 frightens me as if that happens, then we'll have to postpone the spine surgery - because I'm not about to have her do 2 major surgeries back to back.

    Now for my question - anyone have any good links for things like seats etc that can be used to help babies with congenital scoliosis? I have a special chair the wraps around - but I'm still having to prop with towels/blankets. She's really growing now and the curve which was 60 degrees a couple of months ago - is really getting pronounced. So I'd like to find some things that will help her sit up better.
    -------------------------------------
    Erin - Mother to Emily who was born with:

    1) Pulumnary Artresia/Tetralogy of Fallot
    - 2 conduit replacement surgeries
    - 2 stents inserted in conduit

    2) Congenital Scoliosis (9 incomplete vertebrae - 2 hemi)

    3) Cystic Kidneys
    - Right one non-functioning
    - Left one growing and working well

  2. #2
    Join Date
    Apr 2004
    Location
    Morpeth, Northumberland
    Posts
    194
    Hi Kerina
    Have a look at www.leckey.com - they do supportive seating for all ages. Particularly look at the section labelled tumbleforms which is aimed at little people.
    My daughter had a Leckey chair from when she was about 3 or 4 and she loved it - it was very comfortable even though it looked scary!

    It's a UK firm though and I'm not sure if they're available across there.

    Regards
    Lorrie

  3. #3
    Join Date
    Sep 2003
    Location
    north of boston, ma
    Posts
    122
    i don't know any special needs kids who have used these, but the infants who have had these, the moms rave about it:

    http://www.bumbobabyseat.com/

    i wished i had known about these when my 2 were little, but i didn't find out until after they were too big to use it.

    hope this helps,
    deshea
    mom to lucas 6 1/2 yrs old with infantile scoliosis diagnosed at 18 mos 68o/45o;
    spinal detethering due to a tight/fatty filum at 22 mos;
    tlso and charleston brace from 18 mos to 2 1/2 yrs old at children's boston, ma;
    serial plaster casting from 2 1/2 until 4 1/2 at shriners in erie, pa;
    now in a spinecor brace at 21o/19o from montreal. next appt. sept 2008
    and ruby (3 1/2 yrs old and a handful!)
    north of boston, ma

  4. #4
    Join Date
    Jun 2004
    Posts
    55

    Stenting

    Good Morning,

    I haven't had time to check in here lately, but when I saw that your darling daughter needed some stenting done I thought I might post a bit. My son Sean has had 14 cardiac cath/angioplasties, with 4 stents placed. They have helped him tremendously, though it is frustrating that he continues to need further work... are you comfortable with the docs doing the work, or have you considered getting a 2nd opinion elsewhere? Sean has been to several places for his vascular issues, we found the best help at Boston Children's hospital, they were awesome. (though thankfully our local docs in Idaho are also quite good, and are fine for most of his care).

    As for seating, I am afraid I wont be of much help. Sean's scoliosis was not found till he was 2, and by 5 he had already had 5 surgeries for grow rods and his first fusion. He is going to be 10 next month, and is doing marvelously well following halo traction and fusion 2 yrs ago in Seattle.

    Anyway, will keep your little one in my prayers... let me know if I can help in some way...

    Hugs, heidi
    Heidi (mom to 3 boys, Sean is 9 and has LCDH, SBS, is TPN, O2, and Bipap dependent, has SVC stenosis/stent x4, severe malignant scoliosis fused twice from T1-L2, halo traction for 2 months, severe restrictive lung disease, a CVL and GT, Fundo x2, and is one of my heroes.)

  5. #5
    Join Date
    Dec 2006
    Posts
    5

    halos

    i had a halo for 3 months and 3 days. i would not wish it on my worst enemy. it didn't help in the end as i now have constant bad pain in my entire upper body.its just another torture device invented by docs.
    laura

  6. #6
    Join Date
    Jul 2006
    Location
    Pennsylvania
    Posts
    21
    Thanks for all the replies..

    I totally trust the heart dr's at Children's Hospital in DC. Dr. Jonas is one of the front people in pediatric heart surgeries. Even though he doesn't do the cath procedures - the whole cardiac staff is awesome!

    The good news is they're going to try another cath procedure to get the stent in her in Feb. So depending on how that goes - will depend on what we do with her back surgery.
    -------------------------------------
    Erin - Mother to Emily who was born with:

    1) Pulumnary Artresia/Tetralogy of Fallot
    - 2 conduit replacement surgeries
    - 2 stents inserted in conduit

    2) Congenital Scoliosis (9 incomplete vertebrae - 2 hemi)

    3) Cystic Kidneys
    - Right one non-functioning
    - Left one growing and working well

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