We are heading to Minnesota!

I have submitted an appointment request to the Mayo Clinic!  And even more crazy?  They responded with a request for all of Leah's medical records and test results!  And even crazier???  We have an appointment date! Praise the Lord!  His hand is felt in all we do.  Thank you everyone for the prayers you have already sent up on our behalf.

Leah's first appointment with the Mayo Clinic in Rochester, Minnesota is August 7, 2012!  (Yes THIS year!)  They say to expect a stay of 5-8 days.  She will be considered an outpatient though so she will be able to come back to the hotel room with me each night.  From the letter they sent...

Length of Stay: The average length of stay for patients to complete a routine medical exam is 5 to 8 business days, but the actual time spent at the clinic will depend upon the complexity of your case and appointment availability at the time of your appointment.  It can be difficult to predict in advance.  In some circumstances, your evaluation, surgery or treatment may involve a return visit.

She needs to show up that first morning having fasted and they will get going right away.

What to Expect at the Appointment:Your child's Mayo Clinic visit will begin with a thorough evaluation of the medical concerns. The primary physician, who will be responsible for coordinating your child's care, will order additional tests or consultations with specialists, based upon your child's medical needs.  After testing has been completed, the physician will review the results with you and make final recommendations.

Now our biggest obstacle is arranging the finances.  Please, please, please continue to keep her in your prayers.

Dexadrine

Dexadrine (Dextroamphetamine) is a powerful psychostimulant which produces increased wakefulness, energy and self-confidence in association with decreased fatigue and appetite. It works primarily by inducing the release of the neurotransmitters dopamine and norepinephrine from their storage areas in nerve terminals.  (wikipedia)  It is used with great success in treating ADHD, narcolepsy and chronic fatigue.


Well whatever it does and whatever it  is, it is certainly working.  As long as Leah takes the pill in the morning and then again after her nap at school she is able to stay at school.  If, like this morning, her dose is forgotten, the school is calling by about 10am.


As for noticeable side effects for Leah...have you ever seen the movie Hoodwinked?  She is a little bit like the character Twitchy on caffeine.  Chatters a mile a minute about the minutiae of her day, is restless and amazingly enough quite distract-able. This gradually wears off by about suppertime and then shortly after that she is ready for bed.

Her morning dose keeps her going until about 11, then she is able to take a nap at school, eat lunch and get her next dose.  It hasn't affected her appetite too much at lunch as she gets to eat prior to taking another one.

On the weekends and other school holidays, she does not get the meds.  This does result in episodes and extra sleepiness on those days but we believe her body needs a break from the medication and we want her to be eating as much as she can on those days.  Currently I do not plan on keeping her on it over the summer break.  

In less than a month we finally get the appointment with the Endocrinologist. Our success with the Dexedrine might be the key we are looking for in getting a diagnosis.  Hopefully it will help him at least narrow down the possibilities.

A Little Bit of Everything :)

Greetings Friends, Family, loyal readers!  No real updates today on Leah herself, but wanted to keep you all up to date on everything else that is going on with her.

ROM Update
As some of you may have noticed via Facebook, I got tired of waiting for the ROM to respond to my complaint regarding their treatment of us.  So I sent a more tersely worded email.

I am shocked and saddened to see that the staff at ROM have not yet responded to my email.  Your auto reply states up to 3 days, elsewhere on the website it was stated up to 7 days.  It has been 9 days and I have yet to hear from anyone.

 

Our friends, family and readers of a blog we have created for my daughter were quite distraught to hear how callously we were treated.  I had hoped to update them with an explanation but it appears obvious to all of us, that it matters little to you how situations such as this can affect the enjoyment of one family and more particularly the enjoyment of one very sick little girl.

 

I am truly disappointed, we had expected better from the ROM.

 

Kate Balint

 

Needless to say this got a response within 90 minutes.  From there things went very well.  It appears there is some sort of glitch with their website comments page - they didn't get the original email, but they know I sent one because I had the autoreply.  The woman I spoke to - the Head of Customer Experience, has begun to look into the incident, was very apologetic and understanding of our needs.  She has offered to purchase or rent a larger stroller/pushchair for kids like Leah who don't require a wheelchair but are too big for the umbrella strollers they loan out. 

 

All in all the experience taught me a few of things

• It is easier to take a stand for my daughter than for myself - usually I don't make complaints, write letters or cause a fuss.
• Taking a stand and making my feelings known, is not actually physically painful or emotionally traumatising!  Who knew!  I have been avoiding it like the plague for my entire life.
• I always knew the little phrase "If at first you don't succeed, try, try again", but I don't think I had ever put it into action in this way.  Between our struggles getting a diagnosis and now with the ROM, I have a greater appreciation for such a simple yet powerful little phrase.
• Mention that you have a blog - and watch how quickly things move along!  Again, the power of words!  :)

Referral
It is a long traumatising, aggravating, frustrating story - but basically Leah now has referrals to both the Neurology department at McMaster and at Sick Kids.  We have the appointment for McMaster on Wednesday (YEAH!) and Sick Kids is reviewing her file and we should hear from them shortly (we've heard that before!)


Neurology Appointment
While at McMaster Leah will be seeing Dr. Callen (click to see his bio).  

Is it okay to be excited(?) and nervous (nauseous) at the same time?  On one hand, we will be moving closer to a diagnosis which is good.  But on the other hand we will be moving closer to a diagnosis which is scary!  Once we have that diagnosis there is no more pretending that everything will go back to normal.  We will have to create a new normal for Leah and our family and I feel so unprepared.  

So I have been doing what I do best: RESEARCHING.  I started out with a 1 inch binder and have had to move up to a 3 incher.  My printer is gasping for a break and all the Internet browsing has introduced a few viruses onto my computer - thank goodness Paul is a computer genius!

My brain is overflowing with details, stats, acronyms and info.  Based on everything I have read (and by golly it is A LOT!), I have compiled a list of questions and things to discuss with the doctor.  

I have also created an overview of Leah and her symptoms with a timeline of her bloodwork results to give him.  I figure we have wasted a whole lot of time getting to this point and I really want to make this first appointment count for more than a meet and greet.

Normally I would have Paul, or my Mom come with us, just to have another set of ears.  Someone else to ask questions and to fill in the blanks when  I forget things later. (notice I said when not if...I know my weaknesses!) Unfortunately, the fates are working against me this week and everybody is busy, so I'm contemplating playing spy and taping a recorder on me (joking ?).  All humour aside, I am going to do my best to suppress my natural awe of doctors and attempt to take control of the appointment and steer it in the directions I want it to go and to take notes along the way.

School and Leah
Still an ongoing issue, she missed 11 days in November alone.  Her teacher finally went on her maternity leave so now she has a new teacher.  She has been filled in on the issues but doesn't seem to completely have a grasp on it.  To make things even more complicated the supply principal has been changed as well, so I have requested a sit down meeting with them both to review the protocol and update it as necessary.

She is occasionally wearing the pull ups when she feels it is necessary, and has disclosed to me that have been other occasions recently when it has happened but she was so embarrassed she didn't tell anyone.  My poor baby girl, my heart breaks for her little bits each day.  And yet, she is so stoic and matter of fact about all of this.  She doesn't whine or cry about missing out on things, going to so many appointments or having so many tests.  She makes me so proud and she makes me be stronger for her.

Alrighty, I think that is enough for today, if you made it this far thanks!  I have always had a writing/talking style more like making a short story long, rather than a long story short!

Keep the prayer coming and your fingers crossed that we have a great appointment on Wednesday!  I will update as soon as I can.

Thanks as always.

Overwhelmed

I am humbled and overwhelmed by the outpouring of support, love and information we have received in such a short time.  The blog has almost reached 650 views!  So many more brains are working on this problem and I appreciate everyone who has taken the time to read and post.  To think that in everyone's incredibly hectic busy lives, time was put aside for a little girl that most of you have never even met, thank you, thank you THANK YOU!

As I said, we have received so many tips, advice, links and information.  I will be spending today doing more research and compiling a list of items to take up with her pediatrician.

On the good news front, I used my charm and determination to get her an appointment at McMaster with the Hematology department.  They are the doctors that look after her older brother who has an un-named bleeding disorder caused by the platelets not being sticky enough - therefore causing an extended bleeding time, easy and bigger bruising and weak clots that can easily break away.

Anyway, I practically begged them to see her and they agreed.  She will be at McMaster bright and early on Wednesday.  If all goes well, and my husband is insistent and charming enough, maybe we can cut through some red tape and find a back door to the neurology department.

Keep you fingers crossed and the information coming!

Kate and Leah