Few Funny SB things!!!

Hello Everyone!! This being my first post for the new year, Wish you All A Very Happy New Year!!
So I had started drafting this post some time back, then got busy with Christmas n the New Year until now.And to my disappointment, I was unable to find links to research materials, etc for some of my points herein.. :( So here's requesting to those who can help me with links to the related study materials, Please Please do comment in the Comments Section. So here they go -

I wish someone had told me earlier....which is why I want to tell new parents with SB kids...
There are a few things I have discovered over the years, which are similar among most SB kids. I discovered them by posts from other parents of SB kids/adults with SB in various Spina bifida support groups on Facebook. These groups are amazing and I will share their links at the end of this post.All are administered and are very safe places...

So. I shall put up a small list of 'funny things' (issues?) associated with spina bifida.

1. Noddy! -

Since childhood, Vineet has been nodding his head up-down while watching T.V., or maybe sometimes just like that. And I still tease him calling him 'Noddy' :) His dadi  (grandmother) made a point when she once explained that maybe because his head was so heavy, it eased the tension on the neck by nodding. I agreed. Then once when I was going through one of the groups, I came to know that its a common sight to see SB kids and adults nodding their heads so, and this was observed in one of the numerous 'Spina bifida Conferences" held in the U.S.
And I thought to myself - Wow, thats cute... :)

2. Picking at hands and fingers -

When Vinsy was in my tummy, I used to hear a thudding sound whenever I was hungry, and although I knew his legs weren't moving, I sometimes hoped and wished he was kicking when hungry.Then out he came and I realised that he was striking his hands against each other.Sometimes so vehemently that his tiny nails would make scratch marks on his tiny hands.So we made tiny mittens for his hands :) Now as the years went by, the scratching continued as vehemently,to the point that he kept picking at the scabs that were formed too! It would stop only during the winters when he would be wearing full sleeved clothes. Even then he would be picking at the nail base to the point when you could see raw flesh! Nothing stopped him and no amount of scolding helped.
Then again, I discovered in the group posts that it was another common 'funny thing' with SB. Nowadays I apply tape over his fingers that he had picked badly until it got well, threatening to put it back as soon as I saw any peeling!
And it still goes on... :/

3. Sudden Loud Noise -

This one should actually be the first point coz its familiar and common to all SB kids or adults - The unbearable sudden, loud sound of a cracker. It's actually kind of funny coz Vineet can sit through a Rock concert, but one cracker bursting nearby,or the sudden occasional thunder and lightening, can put him in hyper-scared mode for the rest of the day (or night for that matter ). So when he was a kid he would be crying throughout the night when the Indian  festival called "Mahalaya " was being celebrated-people  burst crackers throughout the night . I would be awake with him too, making sure no one burst  one near our house. But even a far off one with a loud noise would keep him awake.
Until we thought of earphones . Now as I write , I fail to recollect why we took so long to put earphones for him !! :/
So as I chanced upon an as article on the Internet about why this was a common topic of discussion in most groups especially with young parents of an SB kid, in short it has something to do with the VP shunt passing behind the ears . I think I should put a link to the article here at this point for those who would like to know more about this .

4. Gagging -

 Most kids and adults with spina bifida have an associated condition called Arnold Chiari malformation Type I or II . Due to this, even as babies, persons with spina bifida have difficulty in swallowing food (gagging) .Again , as spina bifida is a "snow flake" condition , meaning each one affected has different conditions , not everyone may have this problem . Vineet has. Unfortunately or maybe fortunately, as his unvarying food intake makes for regular stool formation and accidents are almost nil. Praise God!
And so for those who are curious to know how this condition affects eating and/or swallowing , here is the link  - http://www.mayoclinic.org/diseases-conditions/chiari-malformation/home/ovc-20249651

5. Dental Problems -

So I just found out that dental deformities in spina bifida (as well as kids with other neuro defects) kids are termed - 'DENTAL CARIES ' by the Medical fraternity. Vineet does have some amount of defect but it is mainly the front tooth which has been displaced by him during growing up years, nothing other than that. If you are interested in a clinical finding, I found a link- http://www.scielo.br/pdf/bdj/v20n5/v20n5a14.pdf

6. Sleep Apnea -

Man, I didn't know this too was associated with spina bifida. With Vineet, it has improved a lot now, but when he was younger and I was beside him while he slept, there were times when his breathing would just stop.I would wait... and wait...thinking what the heck was happening. And finally after a minute or so he would take a long deep breath, much to my relief!! Then I came across the term 'sleep apnea' being used for it in one of our SB groups.This can be caused by conditions like scoliosis , structural defects , or even the weakness of the abdominal or chest wall muscles. 
Here is a great link to some more of these issues - http://www.spinabifida.net/15-health-care-issues-for-adults-living-with-spina-bifida.html


So as I said at the beginning of my post, here are the links to a few of the Awesome Spina bifida groups on Facebook. They are very supportive of all my queries and very informative.

https://www.facebook.com/groups/UbSBGroup/
https://www.facebook.com/groups/28352543484/
https://www.facebook.com/groups/291783857503880/
https://www.facebook.com/groups/RollingWithSpinaBifida/
https://www.facebook.com/groups/spinabifidaassociationofindia/

Until next time, bye All, Thankyou for going through Vineet's Journey! God Bless you All!