Life with a boy and his Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum and two Super Sisters and one yummy baby brother.

Friday, March 1, 2013

Kinda hot and bothered!

As I have mentioned I have been researching Tethered Spinal Cord Syndrome. One thing that was very comforting with Gator, was reading about other children who have Hypoplastic Left Heart Syndrome... When I type in searches for HLHS about 1100 pages come up... I have been able to find 3 people's stories of infantile TSCS. What the what???? And... these are old stories, so its not like I could leave a comment to chat with these people. So I am hoping that someone knows someone who can chat or is going through the same thing. Thanks!!! Otherwise I will have to stay hot and bothered. Well, maybe not hot. It is the end of February and pretty cold outside in Utah. It is a teeny bit discouraging to know May's syndrome is more rare. May's condition effects 1 in 1,000 babies. Gators effects 1 in 100 babies. I have been spoiled by the support of friends and family for both kids, but our heart family's support is empathetic support. To me it is pretty valuable. I kinda really wish there was something similar.


Jamie said...

I'm not sure if this will be helpful at all, but my friend with Lupus uses this site to connect with others. I searched Tethered Spinal Cord Syndrome and there were a few people listed. This is the link

likeschocolate said...

I think this mom can answer your question. There daughter just had surgery for tethered cord. Kelleyn

Brandis said...

If you're not familiar with Mommies of Miracles, their facebook page would be a great place to search for other TSCS families.

Stephanie said...

Hi! I surfed somewhat randomly onto your blog tonight and Tethered Cord caught my attention. My 12 y.o. son was dx'd with TCS when he was 2 years old. He has (or had??.. he hasn't let me look at his butt in several years.. hah ha!!) a sacral dimple but the 'tell' was that he always walks on his toes. Always!

Anyway, he had an MRI to diagnose tethered cord (We saw Dr. Walker too!). However, the ONLY symptom was toe walking. He still does it, but it's not as noticeable now that he's 5 feet tall and wears big manly shoes (heh). It never effected bowel or bladder control, leg strength, back pain, etc.

When I googled (okay, maybe there wasn't google 10 years ago, I can't remember!)I also remember not finding much info or support for TCS. It seemed like the children experiencing extreme difficulties with TCS had multiple congenital defects. I couldn't find any stories about otherwise physically "normal" children that only had TCS.

So 10 years later.. TCS causes my son pretty much zero problems. I forget he has it until I stumble upon a blog and remember.. oh yeah, William has that! lol. I wonder if that is why so little info shows up on the web (then and now)?

Hopefully your little Squishy (so cute!!) will also have no issues with her TCS and you can essentially forget about it too. But if she tippy toes around like a little princess when she starts walking.. well, you'll know why. ;)