Insecurities - what do you think?

>> Monday, April 24, 2017

“Problems are not stop signs, they are guidelines.”– Robert Schuller

Bug is still having bad nights. The caffeine does seem to help him a little but not as much as the first two days. Typical Bug.

Tomorrow is a big day in my book, but not everyone feels like it will be productive or worth. Because I am extremely insecure at that moment, let's go through why I think he needs this MRI and why I give him a 90% chance of having a tethered cord. Let's keep it simple too.

In children, symptoms may include:

  1. Lesions, hairy patches, dimples, or fatty tumours on the lower back
  2. Foot and spinal deformities
  3. Weakness in the legs
  4. Change in or abnormal gait including awkwardness while running or wearing the tips or side of one shoe
  5. Low back pain
  6. Scoliosis
  7. Urinary irregularities (incontinence or retention)

Bug Bum.
Crooked crease or not? Because he wasn't standing
you couldn't see his dimple so I helped a little.
This is the base of his spine NOT his rectum.
That indent there is a sacral dimple.
1. Bug does not have lesions, hairy patches or fatty tumors. He DOES have a sacral dimple and the top of his butt crease is crooked.

2. Bug does have foot deformities that developed over time, so my question is: congenital deformities or deformities caused by something external/internal?

3. Bug has been losing strength in his legs over the last year. These last few days, he can barely walk and his legs give out randomly. He WILL walk but he has to be very motivated and when he does he shuffles. This is not something he has ever done before. It's new. Like really new.

4. His gait has changed substantially over the last year. He won't run or skip like he used to, and his toe-walking is insane now. He has open sores on the top of two toes that I noticed in his bath yesterday. Ya, I cried.

5. I have no idea if he has any low back pain but he won't sit for long and when he does, he shifts around a lot. That COULD mean he was uncomfortable. Who knows for sure? Only Bug.

6. He does NOT have scoliosis.

7. Lately he has been retaining a lot. I mean a lot. He will only pee once a day, twice sometimes but it's always a lot. He used to pee several times a day, more than three times.
So if you look back we can put a checkmark on all but ONE of those categories. And ONE is up in the air.

We also know that depending on the severity of the tethered, blood flow to the brain and extremities can be compromised. That, along with pain, could account for some of the seizure increase as of late. I have all sorts of theories about why we had a good run in December but that means nothing if you can't verify. This MRI will verify.

If he doesn't have a tethered cord, all bets are off. I have no idea where to go from here. We will keep trying new medications but he will have foot surgery. If he continues to toe-walk after the surgery, he may end up unable to walk at all within a few short years. This is a big one either way,  and it IS essential since we can check off so many of those symptoms. So why do I feel so stupid for getting this?


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Diamond Potential Awareness Award

Diamond Potential Awareness Award
Thank you Holly at Diamond Potential for this award. Awareness leads to understanding and acceptance. And let's face it, we all need to feel accepted for who we are. The battle has just begun!

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