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!  

Pettiness

Things are not going well with the school.  On Monday I dropped the letters off in the office and then went over to the School Board to drop off the letter there and try to pick up some hard copies of the info I found on the website.  


No sure why it was such an ordeal but in the end, instead of having pamphlets I ended up meeting with the Coordinator of Special Education - the person I was dropping a letter off for.  We met for about 1 hour, I outlined my concerns about Leah's situation and how the school had responded.  


He gave me the usual song and dance about budgets, resources etc. "In order to free up EA time for Leah, we would have to take that time away from some other child".  I didn't appreciate being made to feel guilty for requesting help for my child so I reminded him that in order for that child to have gotten that time, it was probably taken from another child."


By the end of the meeting we had concluded that developing an accommodation IEP for Leah, and arranging some sort of resting area for her to use daily at lunch were not unreasonable requests and there should be no problem in getting those things set up.  As for dedicated EA time, I would have to meet with the principal, ERT and teacher to discuss it.  He volunteered to attend the meeting if I felt it was necessary.


My job prior to the next meeting was to get one/some/all of her doctors to write letters outlining her condition, restrictions, needs and prognosis.  Not that the letters would guarantee anything, but having documentation from them would strengthen my case.  I also needed to get the Sleep Specialist to finally sign the documentation that allows the school to give her the medication at lunch. 


He advised me that he would be calling the principal to let her know we had met and to give her the highlights of our conversation - something he would have done if he had only received my letter anyway.


Well first thing Tuesday morning I get a call from the secretary on behalf of the principal - they would no longer be able to give Leah her medicine until all necessary paperwork was completed.  I had expected some kind of foolishness from the school - but really, won't give her the medicine?  The medicine that is supposedly keeping her in school more often?  If you want to strike out at me fine, but you are mad at me, not my daughter.  


Anyway, in other news, the Sleep Specialist has decided there is nothing more he can do for Leah so he has discharged her back to Dr. Bonsu and Dr. Callen.  So now I have to hound them for the necessary paperwork and appointments.


Everyone in the family has been sick with this horrible respiratory bug that is going around, I have had to bump Leah from her paediatrician's appointment twice now so he could see one of the other kids.  This Friday, we go to see him again, and hopefully can accomplish everything on my list.

PROGRESS!!!!! :)

Well, we haven't found the magic bullet yet, but we are making progress!  First and foremost we got the orders for a MRI! 

But first a bit of history, a couple of weeks ago, before Leah collapsed for the second time, she had a very bad morning, very lethargic, no energy, not eating, extremely blurry and dizzy, with a bad headache.  We decided to bring her to the Children's Emergency at McMaster.  She was seen very quickly but we got the same response as usual, it isn't an emergency situation and wasn't something they could deal with, within the scope of their work.  They offered us two options, we could be referred to the Paediatrician on staff which would be a one time visit of a maximum 20 minutes, the plus side being it would be the next day.  The second option would be to be referred to a Consulting Paediatrician who would follow her case until its conclusion but would take a couple of weeks to get the appointment.  This option would result in the best possible outcome - someone who could give me a second opinion AND actually do something about it.  So the choice was obvious - wait a couple of weeks and get a second opinion.

A Consulting Paediatrician is a doctor without a regular roster of patients.  She receives referrals from hospital system for children that are in need of a higher level of care than a general practitioner can provide.  Once the "crisis" or medical need is over, care is returned to the general practitioner.  Prior to going to our appointment, I did a little research on her, I went to the website ratemds.com to find out how other parents felt about her.  The response was great!  Parents were extremely pleased with both her medical skills and her bedside manner.  A couple parents even said she figured out their child's problem when no one else could!  HALLELUJAH!  My own personal Dr. Gregory House!

So off we went, with previous test results in hand, my little green book detailing Leah's daily symptoms, complaints, appointments and treatments and a whole lot of hope.

This doctor was FANTASTIC!  She actually spoke to Leah, asked her lots of questions and only looked to me for clarification.  Then she settled her down with some books and then it was my turn.  She really, really, really listened, took copious notes on Leah, her siblings, her family and her friends.  She reviewed the test results and agreed with Leah's paediatrician in saying that it is a very confusing group of symptoms that don't appear to point to anything in particular.  However - and this is what sets her apart from the others - she does not think it is a good idea to just sit back and wait!  She has ordered the MRI, realizing that the Neurologist will want one when we finally get the appointment.  She has also sent out a referral to the Neuromuscular Specialist at McMaster.  We should be able to get an appointment with him relatively quickly.  She did hasten to add that this doctor can sometimes be lacking in bedside manner but he is brilliant.  Even if it turns out that he can't give us a diagnosis, he will be able to assist us in ruling out things.


All in all, the appointment lasted almost 90 minutes.  Not once did I feel rushed, or like I was wasting her time.  She has even gone so far as to assure us that if the wait time for the MRI is too long, she will contact us so we can go over to Buffalo MRI and have it done there.  I think that what makes me feel the most relieved (in a weird sort of way) is that she feels the urgency that I do.  She understands my desire to get answers or at the very least rule things out as quickly as possible. 


I actually slept last night for the first time in weeks.  I don't have any answers yet, but I feel so much closer!