Mayo Moments

Friday, 18 May 2012

No News is NOT necessarily Good News.

The old adage "No news is good news", doesn't always apply.  In the case of this blog, no news just means I am feeling too defeated to type the same thing over and over again.  

Our much anticipated and long awaited trip to the Endocrinologist was a bust.  After doing yet another hour long medical history and ANOTHER full physical, all the same questions and answers, all the same physical checks (down to 49lbscrap!), tests and responses, we got the same answer as always...."We have no idea".  or "There is definitely something going on with her, but it isn't something that falls within our specialty."  or in this case, "There is absolutely no hormone in the human body that can cause the types of issues that Leah experiences."  

As a bonus, they agreed to do some blood work, to repeat it every 6 months and to continue following her for the next couple of years to see if anything develops -  but basically they threw up their hands and shrugged.

Based on bloodwork and medical history they ruled out Ehlers-Danlos Syndrome, Parathyroid disease and Fibromuscular Dysplasia - I had added these three to my list due to recommendations and research.

For Leah it is the same old thing - usually misses at least 2 days a week of school, the cooperation at the school is still less than desired but we are at lease getting the bare basics of what we requested.

We are struggling so hard to find a balance for Leah.  If she does "too much" at night, she doesn't have the reserves to make it to school the next day.  Currently, too much amounts to a 30min swimming lesson and 20-30 minutes in Games Galore (running, playing games in the YMCA gym) on Monday nights - it doesn't even push her bed time back, but it is too much.  I don't think she has made it to school on a Tuesday since Christmas!  If she plays outside "too much" after school, she doesn't make it through supper and may or may not make it to school the next morning.  She already misses her outside playtime during lunch at school while she is taking a nap, and soon will be kept inside the school on the hot/humid days.  She had to give up gymnastics, she only goes to the house of her best friend to play, no other play dates, she has to stay within sight of the house or with an older sibling at all times.  We are already (hotly) debating letting her go on the family vacation to the cottage this year - my instincts say no, but my heart says yes.  

When does she get to just be a kid and have fun?

Following along on that thought, I came across an excellent story written by a lady with Lupus - it is about how she finally stumbled upon a way to describe what having a chronic illness is like.  It is called "The Spoon Theory"
It has spread like wildfire among the disease/syndrome forums.  I am in complete agreement with her explanation as it exactly illustrates what Leah goes through.  As such I have added this photo of Leah.  She is now an official "Spoonie"!

Please keep Leah in your thoughts and prayers as we await a decision from the Mayo Clinic.  A month or so ago, I stumbled upon a chain of links while doing research that led to a Mayo Clinic Self Referral form.  Feeling a little foolish and a whole lot nervous, I filled it out and sent it off.  I sent along the introductory letter I have created and keep up to date with all of Leah's symptoms and medical history to give to each of her doctors.  A couple days later they requested copies of Leah's medical records, scans, MRIs, doctor's letters, THE WORKS!  I organized all that info and sent it off.  A couple days ago I was notified it is being reviewed by a doctor and they will decide if they want to see her.  They have an entire department set aside to deal with "International Patients" and really make an effort to keep us informed of where we are in the process.  My understanding at this point, is that if they feel Leah could benefit from their expertise or that THEY could benefit from diagnosing, researching and treating Leah, than we would go to Minnesota to be seen by some of the best medical minds in the world!  Since she seems to have stumped the ones in Ontario, lets move onto the ones in Minnesota!  

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