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!  

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.

Leah's Story - Part 2

So we were discharged, none the wiser about what was going on.  An appointment for an EEG in the distant future and more questions than answers, and Leah's very sore right knee were the only things we took away from the experience.

When Leah was first examined by the doctor (after she started talking again), she tried to explain to us that the inside of her head felt blurry.  Despite numerous attempts by myself, her Daddy, her Nana and her Auntie, the doctor and every nurse she came in contact with, we could not get a better idea of what this blurriness meant.  Frequently, it was accompanied by blurriness inside her eyes as well - although this does not affect her ability to see properly.  She also had daily complaints of dizziness and headaches.  The doctor and the nurses attempted to blame the symptoms and side effects on dehydration, sun stroke, low blood sugar, or anything else that came to mind, but I was able to counter each with a logical argument, pointing out she had already consumed a bottle of water and a bottle of Gatorade (it was play day and they were spending a good deal of time outside).  She had been wearing a light coloured hat all morning, and had made the required stops in the school at the Rest Stop.  She had just finished lunch (and had breakfast and a snack already) inside and hadn't been outside for long.

Leah missed school for the majority of June.  When she felt well enough to go, she rarely made it past lunch time.  Her first day back at school after her hospitalization she had to be picked up and brought back to the doctor.  He examined her but was unable to find anything wrong.  He decided to refer her to a neurologist.

In the 24 days since she was discharged, she has:

• been seen by her own pediatrician
• been examined his partner who is covering for him while he is on vacation
• been examined by doctors at the McMaster Emergency
• worn a Holter Monitor for 72hrs
• had a complete eye exam
• complained daily of varying levels of blurriness, dizziness and headaches
• difficulty sleeping through the night - very restless, disturbed by pain in various joints
• frequent urinary incontinence
• frequent pain in joints and back
• frequently feels cold when everyone else is hot
• almost daily has a period of time where she "wilts"* and then requires a long nap
• falls asleep anywhere - grocery store cart, anytime she is in the van etc
• fainted/collapsed at least once more

What she/we haven't experienced are any answers.  We have been told to wait for the Neurologist appointment which I have been told can take up to two years - we don't even have an appointment date yet.  We have been told to wait for her Dr. to return from vacation - he returns next Monday.  We have been told to wait and see what happens. 

That is the hardest to hear because what we see happening is that she is getting worse.  Just after she was discharged, the blurriness and dizziness would go away for short periods, now she has it all the time.  Her "wilts" are happening more frequently and she is requiring more and more sleep.  She routinely eats breakfast, sometimes eats lunch and rarely eats supper.  She now has difficulty riding her bike, she is wobbly and falls often.

I am not sure what it takes to get the medical community to realize that something is terribly wrong with her.  She used to be a vibrant, energetic, little ball of cheerfulness and activity.  Now she has brief periods of her old self, but more and more often I find her sitting on the couch or lying in her bed.  Before her eyes would sparkle with happiness, mischief and joie de vivre.  Now they are drawn, tired and surrounded by dark circles.   She is losing weight and complaining of pain in a different body part each day.

So again, I am putting it out there, if any of these symptoms sound familiar to you, please let me know.  If you have experienced this type of progression, drop me a line and fill me in.  If you know of valuable, reliable websites send me the link.  I have researched to the best of my ability but any help would be greatly appreciated.

Thanks
Kate and Leah


*Wilting - when this happens you can literally see Leah fold into herself.  She curls into a fetal position, her head hanging low, shoulders slumped, leaning on whoever is nearest.  Her eyes go flat, she becomes lethargic - completely drained of energy, doesn't talk much-relies on non-verbal answers, extra blurry, extra dizzy, headachy and sometimes nauseous.  Once this happens she falls asleep and will sleep deeply for 2-4 hours.  This happens randomly, doesn't appear to have anything as a precursor, no warning, no clues.