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.

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 49lbs! crap!), 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!  

Appointments! Medications!! Report Cards!!! Oh My!

As I mentioned in the last post, Leah was prescribed Dexadrine as a method of *hopefully* keeping her more awake and alert during school hours.  On day 3 of the meds, the school called to say she was exhibiting some new symptoms and they weren't sure what to make of it.  She complained of her right eye (what is with that RIGHT eye?!?!?!?) being very blurry and the right side of her face feeling funny - which after much questioning really meant numb.

I attempted to get an appointment with our paediatrician, but not only was he not in the office that day, but none of his partners were either!  I tried to call the neurologist but he is on vacation and apparently so was his nurse although her voice mail didn't say that, so I left a message asking for advice.  Against my better judgement I took her to our local hospital.  Now, don't get me wrong, I used to work for this hospital, I know that it has many good attributes, but I also know that the waits are long, the nurses (not all of them) can be rude and lazy, that some of the doctors need refresher manners courses and sometimes they just aren't all that effectual.  But as with anything else, some days are good and some days are bad.

Well that day certainly wasn't my day.  We had an hour's wait just to be triaged.  I explained to the nurse that she has a neurological history, that she is currently being followed by her pediatrician and 3 specialists,that this was a new medicine with new symptoms.  I told her I was concerned about it possibly being a TIA She took Leah's temperature, checked her O2 and heart rate, asked me to guess at her weight, gave her a priority level of 3 on a scale of 1-5 and sent us back to the waiting room. Then we waited another 6 hours to see the doctor only to be told that since she seemed to be doing better that maybe it was "only" a complex migraine, but taking into consideration her neurological background he really couldn't be certain and we should follow up with her doctor!  Oh and maybe stop the meds until we spoke with the specialist. Well, by that time I had had no sleep from working the night before, it was now 7pm.  I was so tired I was nauseous and between the lack of food, stress, frustration and worry, I was cranky and very very close to becoming weepy.

 But I held it together and very politely told him what I thought of his hospital, his triage nurse, his emergency department and our treatment.  I explained to him that the symptoms he was seeing at the 7 hour mark were quite different than they had been when we first arrived. I told him it was unconscionable that a child with a history of neurological issues, presenting with neurological problems should be left for 6 hours and not even been checked on by a nurse!  Not once did someone come and see if she was okay, or if there were any changes!  That it was inexplicable that the triage nurse did not do any other sort of check on Leah.  Didn't check her eyes, blood pressure, balance, or even a set of very basic neuro checks.  He was very understanding, apologetic, attempted to explain away the long wait and the triage nurse's inexperience with children etc.  But in the end, none of it mattered.  Her symptoms persisted until the next day and then disappeared.....as usual.

On Monday we went for her follow up visit to the Sleep Specialist - he didn't feel the medication caused the symptoms and that it might just be a progression of whatever it is Leah has.  He had neglected to look into the functional MRI, and restarted her on the meds.  We go back to see him on the 27th.

Just because this picture makes me smile!  It is from her sleep study from a couple of months ago- she woke up with the cords wrapped around her neck 2x and the wildest hair I have ever seen on her!  Obviously she is a restless sleeper!

Report Card
For many students, getting a report card like Leah's would be great.  She had a B- average, a few Cs, an A or two but mostly in the B range.  For Leah who previously has had an A to A- average, I was not happy.  The teacher commented right in the notes, that Leah is constantly struggling to catch up due to her frequent absences - 29.5 days.  But that only captures the time missed when I have called in to say she won't be in school.  That number is deceptively low - it doesn't show all the days that I get a phone call shortly after lunch saying she needs to come home.  In reality she is at  50+ days missed.  If an average school year has 190 days in it and we are only in February (60% of the year), that means there have been approximately 114 school days so far.  So in reality she has missed about half of her year already!  This year's marks may not look so bad, but what about next year? And the year after that?  What about the skills she needs to learn and master this year for the foundation of all the other years?

At the parent teacher meeting we discussed keeping Leah current.  She states that any work completed at home can not be graded.  She does not use a lot of work sheets in her teaching repertoire - instead she uses a lot of hands-on, experiential learning - which is awesome....if you are in class.  When Leah is at school, the teacher makes an effort to spend time with her trying to get her caught up, or explaining a new concept.  But she says Leah's ability, focus and endurance differ greatly depending on the day and how she feels, making it difficult.  And of course, she has the rest of the class to teach.

I spoke with the Resource Teacher and the Principal and asked if it was possible for Leah to lay down somewhere to take a quick nap - maybe that would help her stay in school more days.  Logically, their outright refusal, cover their a$$'isms, counter arguments make sense.  No place for her to lay down, no available staff to watch her, can't assume responsibility for determining severity of her symptoms... yadda yadda yadda.  They were quick to suggest I pick her up, take her home for a quick nap and then drive her back to school.  In a perfect world that would be great, but my world doesn't work that way as of course I am supposed to be sleeping all day!

Unfortunately for them, I don't feel like being logical anymore. I am tired of being understanding, logical, patient etc.  I want answers for her, I want help for her, I want some type of educational intervention.  Out of everything this I feel I can make happen.

A family friend is an Educational Assistant and I picked her brain a bit. Because her marks have not fallen "enough", she wouldn't be tagged for an IEP - which is ridiculous!  Why wait until she is SO far behind before helping her, wouldn't their time and effort be better served keeping her current?   Even though Leah does not have a "label" yet, the combination of her health, attendance and the school's insistence that she never be alone (must always have another student with her), our friend believes she fits into the parameters to have some EA time dedicated to her.  Unfortunately she doesn't work for our school board, but her sister does!  She is putting us in contact with each other so I can be fully prepared when I approach the school and/or board demanding requesting  these interventions.  Yippee!  Insider information!

We also spoke with the Neurology clinic and requested they move up her follow up appointment.  Now that Narcolepsy has been ruled out, I see no reason to wait the 3-4 months for the genetic testing to come back.  It is time we moved on to investigating whatever is next on their list.  I have to wait until Dr. Callen comes back from vacation before I get an answer.

Yet again, it is another LONG winded update without any real news, just more issues and questions...so disheartening.

As always, if you made it this far THANKS!  Please continue to pray, pass this on/discuss with your friends and families.  Someone out there knows the answers Leah needs, we just have to get the information to them!

Some Progress

As mentioned previously, I finagled an appointment at McMaster in the blood disorders clinic hoping we could parlay that into an earlier appointment in Neurology.  Well I am moderately happy to report that little plan may have worked. 

As I expected, after hearing a summary of Leah's recent problems and her medical history, the resident who was doing the pre-interview, started making the usual noises.  "That doesn't really sound like a problem we would deal with."  "This situation really sounds like a neurological issue." etc. etc.  We quickly explained to him we were there with the intention of ruling out problems and hoping they would be able to help point us in the right direction.

The resident left to speak with the doctor in charge.  When they returned to the room, the doctor in charge stated he wanted to help us expedite her neurologist appointment and to that end he would contact that department himself.  He also gave us the name and number of the neurologist he wants her to see so we can pester the office ourselves.  As well, he suggested we speak to our pediatrician and ask him to put some pressure on the office to get us in sooner.

Leah's nana was quite disappointed that they didn't even order bloodwork and could not be convinced to order the MRI, but I am quite happy that we got as far as we did - it is about all I expected.

I am not used to being this aggressive and it is not something that comes naturally to me.  In fact, just starting this blog and taking our struggle public goes very much against my usually very private personality.  But as hard as it is to overcome my meekness and reticence, I am willing to do that and much more to ensure that Leah gets the care and attention she needs so we can figure this out. 

As of yesterday, Leah has gone gluten-free.  We made this decision based on the loads of infromation sent to us by so many kind, caring individuals.  So many of you out there have stuggled or know someone struggling with Celiac disease or gluten-intolerance and have identified some of Leah's symptoms as common to those medical issues.  So in the interest of ruling out problems, we thought this would be a good place to start.  After all, it can only benefit her, not cause any more problems if we are wrong.  We had already gone dairy-free for her at the advice of her doctor, but there doesn't seem to be any change from that.

On the whole a positive day.  We have crossed the 1000 views mark and quickly closing in on 1200.  This whole blogging experience reminds me so much of that old shampoo commercial....."and she told friends, and they told two friends, and so on and so on......".  And quoting my friend Amie McGregor .."When the Internet is used for good .... Positive results already!"  Our positive results so far are as direct results from the advice, encouragement, prayers and information provided from each person who cared enough to contact us.  Thank you so much!