Posts tagged with lysosomal-storage-disorder

Anatomy of an Intrathecal Clinical Trial Visit

Posted Friday October 28, 2011 by Melissa

Now that we only have 4-day visits instead of 9-day visits, things...

Now that we only have 4-day visits instead of 9-day visits, things seem to go much more quickly. There’s definitely time for some fun stuff (less now that the trips...

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Advocacy Series: Advocacy in 4 Steps

Posted Monday October 24, 2011 by Melissa

I recently spoke at an MPS family meeting about advocacy in different...

I recently spoke at an MPS family meeting about advocacy in different contexts and was asked by several families to compile the presentation and slides and share them. Since the...

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Advocacy

Milestones

Posted Wednesday July 20, 2011 by Melissa

Milestones are things we hear about before our babies are ever born....

Milestones are things we hear about before our babies are ever born. There are pregnancy milestones that then become first year milestones, and second, and on and on. For many...

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IT dose 8

An MPS Cardiology Visit

Posted Wednesday June 22, 2011 by Melissa

Children with MPS often suffer from cardiac manifestations of the disease. The...

Children with MPS often suffer from cardiac manifestations of the disease. The GAG builds up in the heart itself and the valves, causing leakage or “regurgitation” and may enlarge the...

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Echocardiogram

MPS II Intrathecal Trial on Hold

Posted Wednesday June 15, 2011 by Melissa

UPDATE: As of 7/1/11, the suspension on enrollment in the intrathecal trial...

UPDATE: As of 7/1/11, the suspension on enrollment in the intrathecal trial was lifted by the UNC Institutional Review Board. ———————————————– A clinical trial is never a place to get...

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Taking Time

Therapy Thursday: Weighted Garments and Blankets

Posted Thursday May 26, 2011 by Melissa

In keeping with a prior post about making weighted toys, I thought...

In keeping with a prior post about making weighted toys, I thought we’d take the next step and discuss weighted garments and blankets. Sometimes these are also discussed along with...

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Case sleeping at the hospital with his blanket

Be Still My Beating Heart

Posted Friday April 29, 2011 by Melissa

(Humming to Sting as I type this) I really did have to...

(Humming to Sting as I type this) I really did have to still my heart when I heard the latest news. So as not to steal the Thomas family’s thunder,...

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Heart anatomy

Games and Puzzles

Posted Wednesday April 27, 2011 by Melissa

Not too many parents are excited when their child is enamored by...

Not too many parents are excited when their child is enamored by a video game, but I was jumping for joy today. I wasn’t sure what to expect when Case...

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Case playing video game

Therapy Thursday: Making Weighted Toys

Posted Thursday April 21, 2011 by Melissa

Many of our kids have issues with proprioception, a word I had...

Many of our kids have issues with proprioception, a word I had never heard of until about a year ago. I never understood why Case liked to push furniture around....

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Cozy Coupe

Top 10 Tuesday: Top 10 Signs Your Son is in a Clinical Trial

Posted Tuesday April 19, 2011 by Melissa

Welcome to our first Top Ten Tuesday! On a side note, if...

Welcome to our first Top Ten Tuesday! On a side note, if you have any submissions or ideas to use as future Top 10 Lists, feel free to submit them...

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Top 10

Case’s Elaprase Treatment

Posted Saturday April 02, 2011 by Melissa

Every Thursday since July 2009, Case has traveled to Vanderbilt Children’s Hospital...

Every Thursday since July 2009, Case has traveled to Vanderbilt Children’s Hospital to receive an infusion of a drug called Elaprase. So, by now, Case has had approximately 80 infusions...

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Hospital bed sleeping

Recreation Therapy, Case style

Posted Thursday March 31, 2011 by Melissa

Being in a hospital for many days each month is almost enough...

Being in a hospital for many days each month is almost enough to drive a child (or his mother) crazy, right? Especially when that child has issues with hyperactivity, attention...

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Recreation Therapy

One Port, Two Port, Red Port, Blue Port

Posted Tuesday March 29, 2011 by Melissa

Today, Case received his 4th dose of intrathecal idursulfase or Miracase as...

Today, Case received his 4th dose of intrathecal idursulfase or Miracase as we’ve dubbed it. Now, this sounds like a smooth ordeal, but the potential for hangups exists all along...

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Mommy and Case

What in the world is a lysosome?

Posted Monday February 07, 2011 by Melissa

ly·so·some [lahy–suh-sohm] –noun Cell Biology. a cell organelle containing enzymes that digest...

ly·so·some [lahy–suh-sohm] –noun Cell Biology. a cell organelle containing enzymes that digest particles and that disintegrate the cell after its death. Have you ever wondered what in the world is...

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