Mayo Moments

Saturday, 18 February 2012

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 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 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!

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