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.

Small wins

Man!  Does this ever sound familiar!


http://www.myfoxdetroit.com/dpp/news/deena_centofanti/yes-kids-can-get-multiple-sclerosis-20110317-wpms


If you listen to the interview, this family went through so much to finally get a diagnosis for their daughter.  I have seen their story on other websites and it has always struck a chord with me.  Why does it have to be so difficult?


On the diagnosis front we haven't made any progress.  In fact we are stalled until the Endocrinologist appointment in May and then to the Neurologist again in July.  ARGHHHH - that is so far away!


On the school front - well currently we are holding our own.  We had our meeting and it was agreed that the school would begin to send work home for her when she is away - why that was such a big hairy deal I have no idea, it used to be done automatically.


The educational resource teacher administered the Kaufman Test of Educational Achievement (KTEA)

The KTEA provides a individually administered measure of educational achievement for those aged 4 years 6 months – 25 years (comprehensive form) and 4 years 6 months – 90+ (brief form). The test can be used to identify an individual’s strengths and weaknesses in three key domains: maths, written language and oral language. It can also be used as part of a comprehensive psychological, psychoeducational or neuropsychological test battery which can enhance understanding of the individuals total functioning.  

She performed exceptionally well (90-97th percentile) in everything except written language in which she was average.  In their eyes, this meant that she was not having any trouble keeping up with her classmates and that she was handling all the absences very well.  According to her teacher (who has greatly changed her tune since the parent teacher meeting we had) "she is so smart!  I tell her what she has missed, review it quickly and over one recess she is all caught up!"  We reminded them of our concern regarding her foundational studies and they brushed us off.  I maintain that the main benefit of this test will be in using it as a benchmark and next year I will request that it is done again to see if she gets the same results.

Another win for us was finally getting them to agree to a rest period for Leah during her lunch time.  This was a hard fought battle for us, that ultimately required a doctor's note and a great deal of stubbornness on my part.  Ultimately what matters is she now has a place to lay down and take a rest while the rest of the school is out playing.  Then when they all come in, she rejoins her class and they all eat lunch.  We set her up with an amazing little folding cot, her prayer quilt, a little pillow and a tiny little sleep mask!  It all folds up, wraps with a bungee cord and pops into a locker in under a minute.  We practised at home.  In case anyone is wondering, the cot is a complete and total thing of beauty!  So easy to use, lightweight but sturdy, folds up small and totally portable, comes soft sided carrying case with a shoulder strap - just like the lawn chairs.  Can be found at your local WalMart for $24.99 and comes in pink.  There is also a version that comes with a little attached sleeping bag but I think you have to specially order that one. 

Leah says she is sleeping during this rest period and she hasn't come home yet so <fingers crossed> it is working!

What we didn't get was and sort of educational help from an EA or an IEP.  The EA issue we will re-address next year after another assessment is done.  The IEP - I haven't given up that battle yet!

Leah came home today, a little quieter than normal, seemed a little sad.  When I sat down and talked with her, she said it was because she hadn't done very well on a math quiz.  She brought it to me - she had gotten 5/12 and 3/15 on double digit subtraction - a new skill this year.  We talked about it, I kept it low key, I wasn't upset with her and decided that she should rewrite the questions that she got wrong and do them again for practice.  A little while later I went in her room to check on how she was making out....I found her sitting at her desk sobbing.  My heart just shattered!  She was sobbing because she had no idea how to do the questions.  We settled down in the kitchen with Bethany and between us, a pile of pennies and lots of fingers, we walked her through it.  It definitely took longer 15 mins (length of recess) for her to understand it and I was livid by the end of it.  THIS is exactly what I have been trying to avoid for her.  This is the type of problem I have been warning the school of.  Why is it so hard for them to understand and when did they stop caring?

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.

Fighting the Powers that Be

As I mentioned in the last post, I am becoming increasingly distressed by Leah's absences from school.  I have spoken with the school numerous times - the last two times, directly requesting help from the Educational Assistants, to have her assessed for an IEP, to have space made available for her to nap so she can stay in school more often, that work be sent home so I can assist in keeping her current etc.

Unfortunately, the response has not been good and I have been forced to move on to the next step.  Today I drafted a letter to send to the principal reiterating all my requests, my reasons for them and quoting supporting information from the school board's website.  I have cc'ed Leah's teacher, the Educational Resource Teacher and the Coordinator of Special Education at the School Board.  If nothing comes of this, then I will lodge a formal complaint with the school board.

I am greatly disheartened that it has come to this.  I can't believe that the school would not be more proactive in seeking/providing assistance for her.

I have included the body of the letter below.

Further to our conversations on February 15^th and 22^nd, I would like to re-iterate my request for a Team Meeting to discuss the educational and support needs for Leah.  I understand that the lack of an official diagnosis may make this a more difficult process, but the facts speak for themselves, she is missing an astonishing amount of school, and while at school it is noticeable that some days she is lacking the ability to work to her usual level.

As mentioned in her report card, Leah is constantly struggling to catch up on school work missed due to her frequent absences.  I understand that Mrs. ****** is working with her as time allows to bring her up to speed, but I cannot imagine that she has sufficient time to meet all of Leah’s needs. 

As of the date of the printing of Leah’s report card, she had missed 29.5 days of school.   As we discussed, this figure does not include the many, many days that she has come home after an episode.  She is normally a good student who is eager to learn, but with this amount of missed instruction, it is a terrible strain on both teacher and student to attempt to remain up to date.  As stated on the website;

Belief 6:

The classroom teacher needs the support of the larger community to create a learning environment that supports students with special education needs.

From our conversations, I understand that any work sent home cannot be assessed for marks, but currently I am not receiving any type of work/practice for her to do.  I am willing to help her at home, but am not being given the opportunity to do so.  I have asked that any practice or work that needs to be sent home could be given to one of her three siblings at the school.

In doing some reading on the NCDSB website, I am given to understand that Educational Assistants are assigned to the school not a particular student, and I would like to again request that some time be dedicated to Leah to help with her school work and her trips to the bathroom/office/etc.  Based on the Emergency Protocol established at the beginning of the year, the school requested that Leah not be allowed to be alone when outside of the classroom.  Since then she has used other students to ensure her safety, I would prefer that safety issues be attended to by an adult.

I had also requested giving Leah an opportunity to lie down during the day, possibly at lunch.  We have noticed that a brief nap or chance to rest seems to be very beneficial to her and might give her the opportunity to remain at school more often.  I understand that dedicating a staff member to her for this time would be difficult, but again, that is where an EA would be an asset to her.  As for a lack of space, even a quiet corner in the library would be sufficient if a more suitable space was not available, or until one is made available.

While I understand best practices for a teacher would be to modify the teaching program as a student requires it, and I appreciate the offer of an IEP prior to the EQAO testing next year, to ensure she receives some sort of accommodation if required;  I strongly urge that an actual IEP be in place for Leah now. This would allow the IEP to follow her from teacher to teacher for continuity.  Leah’s needs are unique and a new teacher would need to have an understanding of what has worked in the past and what those needs are.  I am requesting the assignment of an IEP at the earliest possible opportunity to ensure she receives the necessary accommodation.   I strongly believe she needs one now.  Again, quoting the Guiding Principles:

·         The guiding principles for services to students are rooted in the belief that the Special Education Department advocates for all students.

·         Students and their successes are the focus of all decision making.

·         The foundation of programming and delivery is early ongoing assessment and intervention.

I am distraught at the idea of Leah falling so far behind that her marks and foundational studies are negatively affected.   This will hinder her chances for success as she progresses through her schooling.  This is something I am not prepared to allow.

As always, I can be contacted by phone or will make myself available for any meetings that would assist us in accessing the help that Leah needs.

Thank you,

Heaven only knows how this will turn out.  Keep us in your prayers.

XOXOX

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!

It's official!

Yes, it is official, Leah does NOT have Narcolepsy. 

Not that any of us are surprised by the news, we (family) never believed she did anyway.  But it is nice to have it verified by the professionals.

We went for the follow up appointment on Wednesday with the Sleep Specialist - very nice man.  Unfortunately we left him scratching his head because he can't figure out what this thing is either!

We go back to see him in three weeks for another follow up.  He has offered us the option of starting Leah on Dexedrine - a half tablet in the morning and if no results add another half at lunch.  The thought process is that it <might> help with her episodes of overwhelming tiredness, as Dexedrine is a stimulant and has proven very beneficial in patients with Narcolepsy.  He is hoping if we could eliminate the symptom of overwhelming tiredness, maybe she would be able to stay at school and not come home so often. We haven't decided yet if we will start her on the meds.  I need to do some more reading and weigh the pros and cons.  I have the prescription if I decide to go ahead with it.  He said if it was going to help we would notice a improvement quickly.  I just need to see if the benefits would outweigh the side effects.

He was also going to do some research into a Functional MRI.  In a nutshell, a regular MRI is to see the structural aspects of the brain, a Functional MRI allows you to see how the blood and enzymes affect the brain.  He needs to do some research because he had a niggling thought in the back of his brain, that there have been some advances/research on the role of a functional MRI and Narcolepsy/Sleep disorders.

As for Leah herself, she has developed a prolonged case of the "blurries"- since an episode on Jan 16th, she has maintained a constant state of her head feeling blurry on the inside.  Back in the spring when this all started, this had happened, and she stayed blurry for a over a month.  Since then, the blurriness had occurred only during an episode and then faded shortly afterwards.

In addition, this past weekend, Leah began having trouble with her right eye.  During an episode, Leah always says her right eye is bothering her, she rubs at it, tries to keep it closed, wipes at it etc.  She can't explain what the issue is, only that it bothers her or feels weird.  On Saturday, I noticed she continually placed her hand over her eye while reading me a story - she couldn't focus on the words unless she closed/blocked her right eye.  This carried over to watching TV as well.  It continued until Sunday when it resolved itself.  We had her checked out by the eye doctor again who says her eye/vision is just fine.

We have reported both issues to the neurologist, but no advice/info for why it is happening has come back to us.

So, while it still isn't an answer, we can check Narcolepsy off the list. 

On a side note...it feels like we have been fighting for answers for SO long, but in reality it has only been 8-9 months.  In that time we have been to see a Paediatric Specialist, a Blood Specialist, a Muscle Specialist, a Neurologist, had a CT Scan, 2 EEGs, a EGG, worn a holter monitor, had a sleep study and a sleep latency study, had a MRI and genetic testing.  Considering wait times in Ontario, she has had incredible access to medical resources!  

I have to remind myself to continue looking on the bright side of things....it could be much worse! 

I received that reminder on Wednesday shortly after our appointment.  We had stopped by Ikea for a quick shopping trip.  Waiting for the elevator, I was grumbling in my mind about the lack of a diagnosis, feeling sorry for myself about all the trips to Hamilton, all the worry and stress, feeling sorry for Leah for all the missed school and activities; the elevator doors opened and I saw a mother pushing her daughter in a wheelchair.  Even though she had a hat on, you could tell the girl was bald, her colouring wasn't good, she had big dark circles under her eyes, she was bundled up to keep warm in the store and had a blanket lying across her lap.  Cancer/leukemia immediately came to mind.  My eyes connected with the mother and we shared a brief smile.  I can not begin to imagine what struggles and heartache she feels;  it certainly put mine into perspective.  Yes it sucks that we are on this quest (it is now a quest in my mind, not a battle, or a struggle or anything else negative), it sucks that it has already impacted us as much as it has, but when I think about how bad it could be, I remember to count my blessings and not borrow trouble.

Happy New Year!

Happy New Year readers!  Our family had a wonderful Christmas holidays and we hope you did too!

Paul and I both had the Christmas week off work and we were able to spend a whole lot of family time together - something that our work schedules don't usually allow. 

Leah only had two episodes over the holidays, they were both during times she was in a warm, busy, loud environment.  We thought we had the pattern figured out based on the last 4 episodes....then she had one today.  And of course, today was different and threw my theories out the window.

Our middle daughter Hannah gave the family a night at the movies as a Christmas present, and we were finally able to go en masse to see Alvin and the Chipmunks - Chipwrecked.  Leah was loving the movie, she was happily gobbling popcorn, sipping some sprite and giggling away.  I was feeling confident that we would have an uneventful time - the theatre was not overly crowded, the temperature was a little on the low side, the sound as always was loud but not painfully so.  Then slowly, slowly, she started leaning into me, then laying against me, then on my lap, then draped across me in her boneless way.  Feeling smug and secure in my understanding of her pattern (at this point she is ALWAYS extremely cold) , I grabbed a coat to bundle around her -  and she responded by complaining she was too hot and took off her sweater!  Well darn it!  What the heck is going on now?  She told me she was dizzy but not blurry, her right eye was "bugging" her and she was tired.  When the movie was over, we carried her out to the van and she was in bed as soon as we got home.  When I was tucking her in she told me her head was starting to get blurry and she just really wanted to sleep, she was very groggy, her voice was wispy and she was having a hard time maintaining her side of the conversation.  My poor baby.


On the positive news side of things, we have a date for her sleep study and the requisition for her genetic testing and Lyme disease bloodwork.  Leah and I are to present ourselves at 9pm on Monday January 16th, at the sleep clinic at St. Joesph's Hospital..  She will hooked up to all manner of monitoring devices and then asked to sleep normally - seems a little contradictory to me, but I guess they still get results.  Then in the morning she remains hooked up, but can be mobile.  We will remain in a dimly lit environment, with little to no stimulation.  Leah will be asked to take a nap every 2 hours - they will only let her stay asleep for a maximum of 20mins each time.  They will do this 4 or 5 times through out the day.  We should be on our way home by 5pm on the 17th.  These results along with the genetic bloodwork (which takes 3 months to get results) will either prove or disprove the working theory of Narcolepsy.

We now also have another symptom to add to our list - Periodental Abscesses.  Leah had another one over the holidays and true to form it occurred over the New Year's long weekend when access to her dentist and/paediatrican was impossible.  We got her on antibiotics as soon as we could and got her to her dentist first thing on Tuesday morning but it was too late, they had to remove the tooth where the abscess was located.  They do this for a number of reasons

• in order to clean out the abscess 
• to ensure it does not spread to other sockets
• to ensure it does not damage the adult tooth underneath
• to ensure it does not spead into the blood stream or the jaw bone

While it really really sucks that she had to have another tooth pulled, I understand the reasons behind it.  We had them fit her for a Space Maintainer since it was one of her back teeth and very likely will take a long time for the adult tooth to grow in.  Keeping in mind that her two front teeth were pulled for the same reasons about a year ago and still have not grown in!

If you add the abscesses to her symptom list, a new syndrome pops up - Ehlers-Danlos Syndrome.  This actually may make sense if enough reading is done and the family history on my side is taken into account.  And of course if you take a good look at this picture!  :) At the very least it gives us another direction to search in.

She does this without even thinking, with no effort, no pain...just sitting around colouring, or as she says "just getting into a comfortable position Mom".