A Princess and her Castle

After a busy and very exciting weekend, followed by a busy and exciting Monday, Leah is having a TERRIBLE Tuesday! Seizures, sleep disturbances, blurry vision, headache, weepy, tired, cold. She is obviously staying home from school. She had been doing so well too.

At least she was interested in learning more about what is going on with her. I gave her this analogy.

She needs to think of her body like a castle that is under attack(germs, viruses, etc) all the time. Inside the castle there are defenders(anti bodies) who run around defending against the attackers. Sometimes the walls of the castle are weakened by mysterious forces (sickness, stress, overtiredness etc) High in the tower(brain) is the princess. She has special protectors(Keppra). Sometimes the defenders are so eager to do a good job defending the castle that they get confused and start attacking the things that live in the castle too. When this happens the princess's special protectors help to keep her safe but sometimes, the confused defenders fight them as well. And as skirmishes breakout thoughout the tower different things(symptoms) happen.

This started a long conversation but she finally seems to "get it". Of course by this afternoon she may not remember we even had the conversation! But at least I will be able to refer back to it :)

Mayo Post-Mortem

It has taken me almost a week to settle back into regular life and reflect on all that happened while we were at Mayo.

Let's start with our overall experience - amazing!  In every way.  The hotel stay, Ronald McDonald House, every staff person, volunteer or nurse we saw - all amazing!

The doctors - Each doctor we saw took the time to review her history and come to the appointment informed but with an open mind.  We weren't rushed, they took the time to ask and answer questions, each doctor at one point or another consulted with a colleague on our behalf.  Each discussed with us the tests they wanted to order, what they expected the results to be and why they hadn't ordered others.  We were active participants in each appointment.  Our concerns were heard and addressed, our opinions and thoughts were valued and our hard work and research were appreciated.

I have already had one telephone conversation with a doctor since we have been home and have a few more scheduled.  They are quite interested in being kept up to date on how she is doing.

The results - We are still waiting for a couple of bloodwork results to come back. The results that we are waiting for will tell us if there is one or multiple  autoimmune issues affecting her.  With autoimmune disorders, you can only treat the symptoms so we have gone ahead and started the treatment for Hashimoto's Disease and the seizure disorder.  Leah started the medication on Friday and so far seems to be doing well.  We haven't seen any of the possible side effects, which is very comforting.

We have ordered her a WobL watch, it is made specifically for kids with medical issues.  It has multiple alarms to remind her to take her medications, the alarms can be audible or vibration.  I have read some very good reviews about it.

We will also be speaking with the school to obtain the necessary paperwork for the No Child Without Program for a Medicalert bracelet.

We have been to see her pediatrician and he has agreed to re-write her prescriptions and order her follow up bloodwork.  So that is a big relief.

Currently Leah is enjoying her time at the cottage with the rest of the family.  I get updates throughout each day about how she is doing and Paul is keeping a journal to track her health and episodes.

Final Tally - we haven't gotten the final bill yet from Mayo, but I kept a very, very close eye on our account while we were there.  The poor ladies in finance knew me by name!  We are still waiting for the doctor's fees to be added to the bill.  But at this point, based on the estimated amounts, we will come in under budget for the trip!  

And she is home again.....

I have to say, I do love it when a carefully thought out plan works out perfectly - although in this case, I really do wish it wasn't necessary.

Yesterday, I met with Leah's teacher, principal and the Educational Resource teacher to create an Emergency Medical Protocol for her.  Hers, just like our Leah, is unique.  Usually when a protocol is created, it is because there is a solid diagnosis with definite signs, symptoms and actions to take.  In Leah's case it is full of "if this happens do this....", BUT "if this happens than do this....", OR "if this happens than do this..."

We had a very good, in depth meeting, the staff took lots of notes and were very interested in the history and progression of what she had been going through and most importantly of all, understood the necessity of having all staff members familiar with her and her condition.

To ease the process, I had typed up a list of her symptoms, what her reaction(s) is and a bit of her medical history.  I explained our concerns for her education and her socialization as well as her needs during and after an episode.

We discussed the need for ongoing communication and what would happen during school trips, assemblies and the need for her to have a bathroom buddy.

As it turns out, the first test of our protocol happened this morning, less than 24 hours after we finalized it.  And to boot - she had a supply teacher.  Her teacher had left a copy of my letter as well as instructions to confer with the teacher across the hall should she have any questions.  Today, Leah was home by 11am.  The plan worked like clockwork, all points were considered, assessed and followed through on.

Now that I know the protocol is in place and working, her fairy-god teacher across the hall is watching out for her, and all staff/volunteers and supply teachers will be informed, I think I can rest a little easier during the day.

This is a copy of what I had prepared prior to the meeting.

Leah Balint

Age 7 (June 10, 2004)

49lbs

No known allergies

Suspected Seizure Disorder

Doctor’s recommendations

·                  Minimize physical exertion

►    Participation in strenuous gym activities should be avoided (e.g. Races, aerobic activities)

►    Participation in regular activities is encouraged (e.g. Dodge ball, dancing, etc.)

►    Leah has been advised to limit running and chasing games while out for recess.

►    Leah has been advised to self-monitor – if she begins to feel weak/dizzy/sick to sit or lay down wherever she is and request teacher assistance        
Maintain a moderate body temperature

►    Leah should avoid becoming overheated whether through play or in the classroom.

►    Leah frequently feels extremely cold and an extra sweater has been placed in her locker for these periods.  Normally she would wrap up in a blanket as well, but unsure how that would work in the classroom

    Episodes

►    At the appearance of any symptoms or episodes, Leah can be assessed and sent home if deemed necessary.  Normally she requires a lengthy recovery period before she returns to normal and this will only interfere with the other student’s classroom activities.

►    If at anytime Leah should collapse or lose consciousness, 911 should be called and she can be taken to the Welland Hospital.

Symptoms

Leah’s myriad of symptoms is both troubling and confusing for the doctor’s as they don’t necessarily point to any one condition.

• Fainting with a long recovery time afterwards
• Complaints of the inside of her head feeling “blurry”
• Dizziness
• Sudden headache
• Repeatedly rubbing at her eye(s) because it feels “weird”
• Extreme coldness
• Occasional urinary incontinence (may be related to a seizure)
• Sudden “wilting” our way of describing a series of symptoms
• Eyes go blank or flat
• Lack of energy

Lethargic

Curling into herself, head hangs down or she puts it on the desk

Difficult to talk, to express how she is feeling, or what is going on, will give non-verbal responses when possible

Very weak feeling, resistant/unable to walk

Wants to keep her eyes closed

May suddenly wander off to a quiet space and fall into a deep sleep and be confused upon waking

Could also suddenly fall asleep in the middle of a loud noisy environment (assembly in the gym)

Leah is usually reassured and calmed by physical contact, usually “craves” it afterwards e.g.  Thursday when Megan Tessier cuddled close to her on the carpet, stroked her forehead and read to her until I arrived.  She needs it to feel secure, as she is very often confused about what has just happened and self conscious/embarrassed.

History

Prior to April/May of 2011, Leah was a very energetic, bouncy normal little girl who happened to fall down an awful lot.  We had been investigating these falls with her doctor since SK, but had never found a reason for them.  We would often describe these falls as “limp noodle” falls, she would just drop, make no effort to stop herself, would not put her hands out to break her fall or reach for something to catch herself.

Since the spring, Leah’s demeanor and energy levels have changed drastically. 

Most mornings she would complain of not feeling well, sore stomach, and muscle aches and pains.  She began to have trouble sleeping.  She would frequently need to come home from school due to her not feeling well.  We began to investigate with her doctor but continued to receive results from blood work and scans that were within normal parameters.

By June it seemed that Leah was missing more school than she was attending.  On June 16^th, she lost consciousness during play day.  Her recovery time afterwards was very long and it impacted on her speech, her muscle strength, she experienced a headache that lasted for days, her head and eyes felt “blurry” for weeks and she had daily bouts of dizziness.   She was hospitalized for 3 days while they monitored her, performed extensive blood work, ECG and a CT scan all of which came back normal.  An EEG was scheduled which also was normal.

Leah was deemed able to return to school but on the mornings she felt well enough to attend, she would normally call to come home by lunchtime.  She wore a holter monitor to school for the last 3 days of school, but again, there were no abnormal findings.

Throughout the summer, Leah has lost consciousness a couple more times as well as having many of what we call episodes.  She has been seen by the Children’s ER at McMaster, her paediatrician, a consulting paediatrician at McMaster and a Neuromuscular Specialist.  We are still waiting for her appointment with the Neurologist.  She has a repeat EEG scheduled for September 19^th and an MRI on November 5^th.  The working theory at this point is some type of seizure disorder.  The sudden falls may actually be atonic seizures and she may be experiencing complex-partial seizures, and those episodes of “wilting” may be her recovery period (post-ictal state) afterwards.

Due to her continuing issues and the aftereffects of these periods of lost consciousness and episodes, Leah has trouble retaining information (will ask the same questions repeatedly), has some balance problems (she can no longer ride her bike) and can become quite emotional very quickly.

Her father and I are very concerned about how she will perform this year and are looking for options to keep her up to date with her learning; we would hate to have her fall behind, as prior to all of this she was a very good student.

At anytime I am available by cell phone or at the house phone.  I do work midnights and sleep during the day while everyone is at school, so if for some reason I can not be reached, please call my mother who lives not far away.  She can come to the school to pick her up.  My husband works in Burlington and is too far away to assist with Leah during the day.

My husband and I would like to thank you for your help and concern for Leah.  Hopefully with us all working together Leah can have a successful year and her doctors can find some answers so we know for sure what we are dealing with.

With much appreciation,

Kate and Paul Balint.

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.

Leah's Story - Part 1

Leah was born on June 10, 2004.  She was very healthy, with the only concern being a slightly "loose" left hip.  We were assured this would firm up on its own.  She was and has always been a very healthy, cheerful, loving, friendly, happy-go-lucky, energetic little girl.  She has four brothers and two sisters, none of whom display any of the issues she is experiencing.

From the time she began walking, Leah would fall.  And I don't mean she would stumble, or trip over a toy, or lazily drag her toes, she would just collapse.....like a limp noodle.  She wouldn't throw out her arms to break her fall, or anything, she would just collapse.  It would happen so quickly and so randomly it was hard to actually *see* what was happening.  She would immediately leap back up and shout out a quick "I'm OK" and go back to what ever it was she was doing.  It happened so frequently it became a bit of a family joke.  "There goes Leah, tripping over dust again."  or  "Leah has inherited the K gene...K for klutz."

We began to take it a little bit more seriously when her teacher called to discuss the amount of falling she was doing during the school day.  We took her to see the pediatrician, he checked her out, ordered xrays for her hips (to see if the old hip issue was the problem) and blood work.  Other than the bloodwork, everything came back fine.  Her CK levels were elevated - this indicates that she has elevated muscle enzymes in her blood.  LiveStrong.com explains it very well here http://www.livestrong.com/

Over the next two years, we would return to the doctor to have her bloodwork rechecked.  Her CK level would fluctuate but remained high, as well, occasionally her thyroid levels were high.  The doctor continued to explain it away as a virus that lodged in her muscles that was taking a long time to clear up.  We had her assessed at the Niagara Peninsula Children's Centre by a Physiotherapist, Occupation Therapist, a student Doctor and a Speech Therapist.  The only findings was that she is hypermobile in the knees and ankles.  The conclusion, while the hypermobility maybe contributing to her falling, it was not the main issue and the team felt there were underlying issues causing it.

Finally, June 16, 2011, after yet another set of abnormal blood work, her doctor agreed to send her to a muscle specialist McMaster Children's Hospital.  He promised to complete the referral and send it off as soon as possible.

I had no sooner walked through the front door and called my husband to update him, than the school called.  Leah had collapsed outside on the soccer field.

I grabbed my cellphone and called the Doctor's office on my way out the door.  They agreed to see her right away.  I raced to the school, my heart racing.

I was met at the front door by the secretary and brought to the staff room, Leah was lying on the couch in the fetal position, with ice packs on her neck and ankles.  There were three teachers with her and everyone was very concerned.  Her eyes were flat looking, and she would only respond non-verbally, she couldn't hold herself up in a sitting position and I had to carry her to the car.

From what I can piece together from the students, her brother and the teachers, no one saw her go down, they don't know if she felt sick before hand, don't know if she shook (had a seizure), don't know if she hit her head on the grass or for sure how long she was out for.  All we know is that there was enough time for a student to get her brother's attention and for him to reach her and try to pick her up.  She was limp in his arms and not responsive to his voice.  Teachers were alerted and came at a run.  Leah remembers waking up and seeing her brother Connor looking down at her.  Connor states her eyes were fluttering and even though it was hot outside she wasn't sweating.  He also said she did talk a little bit but wasn't making sense.

We went directly to the Doctor's office, on the car ride over, she was still having trouble holding her head up, she was able to sip some Gatorade but still was not talking.  It took her over an hour to begin speaking again and over two hours to begin walking again.

She was admitted to the hospital for three days.  While she was there she received an EKG, a CT Scan and a variety of bloodwork.  Everything came back as fine except for the bloodwork which as usual had elevated CK levels - but lower than they had been the week  before.  Occasionally, her blood pressure registered as very high, but when it was taken again, it would be normal.  As well, even though I found the room to be quite warm and stuffy, she was continually cold.

She was discharged on June 18th, with no real answers but with a appointment for an EEG on July 21st.