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Friday, July 30, 2010

MRI Update/What is a Tethered Cord Anyway?

For those of you who are wondering, the MRI went fine. The boy wasn't sure about taking the medicine that would mean he wouldn't remember much or care about the procedure, but in the end he decided to go for it. He became very drowsy and seemingly content within 20 minutes. The procedure went just fine although it took quite awhile to get the anesthesia out of his system and the poor kid threw up several times before beginning to get back to normal. Not to worry though, he asked for his promised Lego toys and a cheeseburger before the night was through!

As to tethered cord, thanks to Children's Hospital Boston for this excellent description: 

As a human embryo develops, the spinal cord starts out as a flat plate of cells on the surface of the embryo. This plate later rolls into a tube and becomes surrounded by a tough covering called the dura, then muscle and bone, which form later in the process. During fetal development, the spine lengthens faster than the spinal cord, so that the lower end of the spinal cord ends up at the level of the second or third vertebrae in the lower back. 

If all goes smoothly, the cord grows so it can move up and down freely in a channel within the protective bones of the spine. But sometimes the spinal cord becomes attached, or tethered, to the surrounding tissue, usually at the base of the back. If this happens, the cord will become tight and stretched as the child grows, leading to symptoms of nerve damage, such as weakness or numbness in the legs, back pain, and trouble controlling the bladder or bowels.

If the syndrome is associated with myelodysplasia, it will usually be repaired at the same time as the neural tube defect. It can also be caused by a spinal lipoma (fatty deposit in and around the spinal cord), injury, tumor or (most commonly) by a fatty or tight filum (the filament of tissue that extends from the lower end of the spinal cord). In these cases, a child may not develop symptoms until they hit a growth spurt later in life. Surgery to release the spinal cord and allow it to move freely is the recommended treatment for a tethered cord that is causing symptoms. In fatty or tight filum cases, this surgery is relatively quick and straightforward.
And so now we wait. Apparently it should take about 3-5 business days (sometime next week maybe?) to get the MRI back and read by the pediatric neurosurgeon, Dr. Monica Wehby who is apparently great and OPB just did a story on her -- click on her name to read all about her!

Thursday, July 29, 2010

The Lightening Thief gets an MRI

So this is it. MRI day. For those who think these things are easy with SPD, they would be well... wrong. 

Looking forward to it being over. We got the boy up early to make sure he ate something before the deadline of 7 am. Now he is moaning about hunger... expect that will last until we are done. He is getting close to the deadline for clear liquids as well so if I can manage to get these two kids dressed, we are going to the store for some Gatorade (one of his favorites) to tide him over until the 11 am deadline for that. 

I found a play date for the girl (thank goodness I don't have to deal with that as well). 

I've already contacted the radiology department since they mentioned something about an IV. My immediate thought, "Are you kidding me? There is no way you are gonna get that to happen unless the boy is O*U*T!" Luckily that is the plan. 

So most children would just breath in the sedation and fall asleep and wake when the procedure is over no worse for wear but maybe a bit groggy and/or queasy-ish... my boy remembers the way it felt from having his tubes put in and likens it to slow death! Great that makes things easy now doesn't it?! Asking your child to relive the feeling of a slow death... nice. 

So... I called radiology and they said there is an option of pre-sedation that brings on a pseudo amnesia (scary thought). Of course they mentioned it tastes nasty... how's that gonna work...  but they did say it is a small amount and they can squirt it in his mouth... so hopefully with a tight hold (if need be) we can make this work. 

I positioned it to the boy that this was a great thing. Take this quick tiny bit of medicine and you won't even remember the slow feeling of death! (Gosh... let's hope his desire to get this over with and get to eat can win against the forces of neurological messaging!) 

I guess it is appropos that we are watching The Lightening Thief... epic battle of wills! 

Monday, July 26, 2010

MRI Madness

We have a big week ahead of us with this MRI scheduled for Thursday morning. 

Hurdle #1:  When to tell the boy about it. 
Hurdle #2:  No food for 6 hours before hand (so effectively none that morning). 
Hurdle #3:  Getting him into the van to go and then out at the facility. 
Hurdle #4:  What am I willing to bribe him with in order to get this done? 
Hurdle #5:  Paying the bill once it's done. 
Hurdle #6:  Dealing with the overnight hospital stay (if needed) for laser surgery! 

I guess we truly have to take this one day, step at a time. Could be over on Thursday or not. 

And once this is taken care of, there's the orthodontia issue, possible tiny hole in his ear issue and how in the heck to get his blood drawn issue (in order to figure out what's missing from his diet since he's lost weight over the summer!) 

Ahhhh with SPD, the fun never ends!

Saturday, July 24, 2010

10 things we are doing this summer related to SPD (sort of)

  1. The boy has started occupational therapy - AGAIN.
  2. The girl is scheduled for an SPD evaluation (mostly in case she is a SEEKER). 
  3. The boy is scheduled for his MRI (shhhh don't say anything to him yet). 
  4. We are starting to do brushing again this summer. 
  5. We will start the listening program again if we can connect our old OT w/our new OT.
  6. The boy is scheduled to see an orthodontist next month regarding his mouth structure and how it might change. 
  7. We may well end up paying out of pocket for speech therapy if our dang school district let's the proposed cuts to special education stand. 
  8. We need to get a blood draw for the boy so we can figure out what vitamins and minerals he is missing and supplement. 
  9. Now that the boy's ear tubes finally came out (years later), we are having him seen by the ENT next month about new potential low frequency hearing loss which may be a tiny hole in his ear. 
  10. We keep on keeping on trying to have as much fun between all this medical stuff as we can, including trips that make the boy exercise and build muscles and get outside (such as Mt. Rainier)!
And you?