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Introduction

cynthiar2003cynthiar2003 member
in Special Needs
Hey there - new here. My son just turned one and I just realized the Bump had a special needs board. DS has form of spina bifida called lipomyelomeningocele. He has DAFOs for both feet and sees an orthopedist, neurologist and urologist regularly (in addition to his pedi). He actually does very well (he's not affected above the waist) but we do have PT 2x per week and cath him 1x per day. 

Its been a journey but he's our first so its really all we know. He's been developing fine but we are realizing the walking will take some time. Anyhoo, just wanted to introduce myself and say hello! Interested if there are other SB/Lipo parents here...
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Re: Introduction

  • realisticdreamsrealisticdreams member
    Hi!  My daughter who is 4 has lipomeningomyelocele, plus multiple other dx.  (some related and some not). She had 18 docs the last time I checked.  We dont' do PT anymore because we kind of hit a wall with it, and she has some other dx for which PT isn't always helpful.  We used to cath 4x a day but that was a huge issue for her because she has a lot of sensation (if not extra painful) down there, so we did a dilation and right now considering options for doing the Mitrofanoff/trying to cath again/not knowing wth we are gonna do.

    We just got approval for her wheelchair, she can walk short distances, but not long and at 53lbs has outgrown most strollers, and is extremely difficult for me to lift!  She used to have SMOs and then orthotics.

    Welcome!!
    DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned

    DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3


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