Ups and Downs & Prayers and Squares

Almost a month has past since our last post.  In the big overall not much has changed for Leah, she still has frequent episodes, and is still missing on average 2 days of school a week.

Halloween was a lot of fun, the kids had a blast touring the neighbourhood with their friends.  Leah did not make it through the entire night.  One moment she and Megan were skipping up to knock on a door, the next moment, she was shuffling back toward us to climb into the wagon, curl up under blankets and fall asleep.

The results of her second EEG were normal, so it is now being assumed by her regular pediatrician that there is no brain involvement in whatever is causing the episodes.

On November 5th, she had her MRI, she did a fantastic job.  She was well prepared for it, we talked and talked about it, watched a video on YouTube that was made for kids about to have one.  She had her "doggy" and her prayer quilt, and picked "The Incredibles" to watch.  At the end she was rewarded with a medal and a small stuffed animal from the MRI tech for her excellent behaviour.  The good Lord only knows how long it will take to find out the results, as nothing moves quickly.

On November 14th we meet again with Dr. Hallet, the peadiatric speacialist - hopefully she will have some new ideas for directions we should take.

We received the referral for the Endocrinologist - Leah will see someone in MAY!  Again, as I mentioned earlier, nothing moves quickly.

Still no appointment with the Neurologist!  ARGHHH!

On the worrisome side of things,

• she appears to be losing some weight again, I know she has grown a bit - her pants are short again, but she is appears awfully skinny to me
• I am noticing more and more periods where she appears unfocused, "dazed" or flighty
• her energy level is still quite low, she isn't the happy-go-lucky, always bouncing little girl from before.
• the only time she really lights up is when she is about to meet up with her best friend Megan
• this week she had 3 episodes in under 24 hours - this has never happened before and has me on high alert
• the work coming home from school is beginning to show the affects of her frequent absences.  Tutoring is looking like a very real necessity.  We get a report card on Friday and I will have a better idea of her grades - although her teacher seems to think that she is doing very well.

On the positive side - Recently Leah was blessed to have the Prayers and Squares Ministry at Bethany Community Church make her a Prayer Quilt.  Once it was completed, the congregation was given the opportunity to stop in the lobby, tie a knot and say a prayer for Leah.  There are many, many knots representing prayers from the men, women and children that attend Bethany Community Church, and our heartfelt thanks go out to each of them and to the Prayers and Squares ministry group.

Prayers & Squares is an interfaith outreach organization that combines the gift of prayer with the gift of a hand-tied quilt. Unlike many other groups that make quilts for charitable causes, the purpose of Prayers & Squares is not to make and distribute quilts, but to promote prayer through the use of quilts. Our motto is: "It's not about the quilt; it's all about the prayers."

Each Knot Represents a Prayer
The idea behind these prayer quilts is simple. A heavy thread is used to take stitches through the quilt layers, and the ends are left free to be tied with square knot. As each knot is tied, a silent prayer is said for someone in special need, who then receives the finished quilt.



  She received it just in time to take with her to the MRI. 














As always, thank you everyone for your continued thoughts and prayers - we appreciate them so much.  The emails, Facebook messages and kinds words in passing remind me daily that we are not alone in this, we have people - friends and family near and far thinking, praying and rooting for us.

Little Red Wagon!

My dear Grandmother in Nova Scotia has just been beside herself about Leah.  She is so worried about her and calls my mom often for updates.  Last month she was trying to convince us that we needed to buy Leah a wheelchair - she is so afraid Leah will have a bad fall and get hurt during one of these episodes.

Well I don't think any of us are at the stage where we would consider a wheelchair, but I had been looking into strollers/buggies made for bigger kids.  The ones that are made by medical companies have a wheelchair-ish look to them, and the ones that are made by baby buggy companies just aren't right either. Not to mention that the prices are skyhigh - not that I wouldn't buy it if necessary but golly it would hurt!

Then, thanks to the wonder that is Pinterest (my newest addiction), I stumbled upon this little beauty.  The Easy Go Wagon.  It is 4 feet long when open, has a canopy, can fit two kids and/or tons of stuff, has great heavy duty wheels, a weight capacity of 150 lbs and folds up nice and small so I can carry it around in the van and actually fit something else in!

I had seen similar items over the summer while at various parks and attractions and had been intrigued.  I started looking around but didn't have the right search terms to find them.

Today I found it on EBay, brand new, low shipping with a Best Offer option.  They wanted $99.99 but I offered $75 and they took it!  I have seen them as high as $189 so I am very pleased with my purchase.

Now I don't have to be worried about what to do with Leah while we are out.  No more trying to squeeze her into Pat's buggy and displacing him.  She will now have room to lay down when she needs to, and when she really needs to cling to someone, one of the other girls could even climb in with her.

All in all, I am very pleased with this.  It will ship out tomorrow morning, I will pick it up at my friendly depot in Niagara Falls, New York later this week and then we are ready to head out and enjoy the sights and experiences of fall here in Niagara!

FRUSTRATION!

Today we went to the paediatrician's office for a follow up on Leah's extensive bloodwork and EEG.  The bloodwork had been ready on September 26th, and for some reason we were not called.  The EEG was ready some time last week, and again we were not called as promised.  I called McMaster to find out the status of it, and when told it had been read, dictated and printed, called the paed's office and made the appointment myself.

The waiting is tough enough, never knowing when the phone call is going to come and even worse, what it is going to say.  But to wait, and wait, and wait, and never get the promised call - for no apparent reason, really burns my butt!

Results

EEG - bottom line,it  is still showing as completely normal.  His response was, if the CT Scan and two EEGs are normal we can assume the brain is not involved.  But we will still wait for the Neurologist appointment.

Bloodwork - her thyroid hormones are normal - this means there is neither hyper nor hypothyroidism at work.  However, the other tests that use thyroid indicators(anti thyroglob, microsomal anti & TSH) are high and have been slowly increasing all summer.  This points to an autoimmune problem and based on that he has sent out a referral for her to see a Paediatric Endocrinologist at McMaster.  As well her CK (muscle enzymes were still high), her Blood Gases were a little off (PCO2 high, PO2 low and HCO3 high), and her red count high.

As usual the statement I received when asked for a more definite diagnosis was, "It shows something is going on, but nothing is high enough to point to one thing."  Hence another referral, more waiting, another chance to explain 3 years worth of symptoms in a 20 minute appointment, more tests, more questions, more exams and more WAITING!

In the meantime, Leah is missing on average two days a week of school - not including doctor's appointments.  So far, this is not impacting on her learning.  The work she is bringing home is excellent and she is still loving being there.  She has grown a couple of inches and gained a couple of pounds since July which is good, but her eating is still a little sketchy, so we have started giving her a bottle of Pediasure a day in addition to her vitamins.

Wishing and hoping and thinking and praying....

Wishing and hoping and thinking and praying

This is the phrase that keeps going through my head.  Now I know that it is the opening line from a delightfully cheesy Burt Bacharach song, but it fits here too.

So much of medicine is waiting.  Waiting and ruling things out.  I realize that eventually, we will rule out most things and what we are left with is the probable diagnosis, but really, how comforting is that?

On Monday, Leah and I travelled to McMaster Children's Hospital again.  This time she was going for her second EEG.  We met with a fabulous technician.  She was so professional yet very kind, personable and put Leah right at ease.  She encouraged Leah to sleep if possible because the test can pick up some different information when the patient is asleep. 

First they created a baseline - she had Leah lie very still with her eyes closed for a while, then with them open and then closed again.  From my seat in the room, I could see the monitor and she had  very rhythmic readings.  Then they did the 3 min HVPT - Hyperventilation Provocation Test , after that test, even when she did fall asleep, her patterns never returned to a nice rhythmic pattern.

Now I don't pretend to understand what I saw, but I thought that it was interesting that after the HVPT was done, there were noticeable changes in her brain activity.  Even while she was asleep there were sudden and large spikes in activity. 

As always, the technician isn't allowed to tell us anything.  She said a neurologist would review it and a report sent to our paediatrician.  We can expect the report to hit his desk in about a week.

While we were at McMaster, I stopped by the Neurology department to put another bug in the ear of the secretary.  She now has a sticky note with Leah's name on it attached to her monitor.  It is to remind her to continue to search out which doctor is reviewing her file.  Not that I was told this, but I get the feeling her file is lost amidst paperwork on some doctor's desk.  So, I will continue to call and stop by until someone tells me she has an appointment!

On a positive note, we had a great weekend full of family fun.  Saturday we went to the Pied Piper Parade - a family tradition!  Leah was a beautiful bride and had lots of fun on the play activities in the park afterwards.  On Sunday, Leah had a wonderful time at her BFF's house and then we went to our local pumpkin farm for a great outing on a beautiful day.  Fun was had by all and we all returned home tired, but happy.

So until we find some answers, we will continue Wishing and hoping and thinking and praying

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.

And so it begins

Normally I work steady midnights at our local university.  I work in the Residences, doing a combination of secretarial and hotel front desk type work.  But for three weeks before school starts and when it ends, I work days, assisting the other staff in getting the rooms inspected and our offices ready.

This year, my husband packed up the kids and took them to the cottage for three weeks.  All the kids that is except Leah.  Her doctors didn't feel that an 8+ hour hot car ride would be a good idea.  Add to it, that the cottage is only accessible by water - about 20 mins by boat.  Then to get to the nearest hospital it is almost an hour.  It just wasn't prudent to take her so far away from help.

My mom offered to have Leah stay with  her during the day while I was at work.  I reached out to Leah's step brothers, her friends and my sister and asked them to keep a day or two open to spend with her so Nana could get a break and Leah could have some fun.  As well, we did "fun stuff" on the weekends and ate take out whenever possible!

While at Nana's house, Leah spent most of her time laying in bed watching TV, eating and just chilling.  No excitement, no exertion and no episodes.

She had a couple small episodes while out with her brothers after some physical exertion but on the whole, the three weeks passed with out any major issues.

As I mentioned in the previous post, I have been keeping her school and teacher informed of what is going on with Leah and warned them it could happen at any time.....like today.

I got a call at about 11:30am from the school.  Leah had "wilted" - that is our way of describing how she curls into herself, drained of energy and lethargic.  She was responsive by head movements but not talking.  When I got to the school, she was curled up leaning against the teacher's reading chair, her best friend was sitting beside her, stroking her forehead and reading her a story.  Leah walked over to me - her gait wide and waddling, her eyes flat, cheeks flushed and raised her arms for me to pick her up, as if that small exertion was too much.  I carried her out and put her into the car where she was able to buckle herself up, got her home and cuddled up in bed with her.  She relaxed there, slept for a while and woke up hungry and back to herself.

While I was at the school I asked the teacher about the morning, had there been physical exertion, did they have gym class, had she gotten upset about anything, did she get in trouble for something and become emotional?  A whole lot of "No"s.  Other than the room being quite warm and stuffy, I can't ascertain any trigger for her episode.  So into the green book the info goes.

I can only hope this doesn't happen too frequently, it freaked her teacher and vice principal out!  But I guess I am glad that it happened sooner rather than later, now they know what to expect and the best way to deal with her.  Hopefully she doesn't progress to fainting like she did last year!

Back to School

As with many other children in Ontario or maybe even Canada, I haven't really been paying attention to elsewhere, Leah started back to school today.

She was very excited, eager to get there, see her teacher with whom she had been with in JK, see her friends that she had missed so much over the summer, and of course to spend time with her "bestest" friend in the entire world - Megan. 

Megan and Leah are kindred spirits in every sense of the word.  When Leah isn't feeling well and can't spend time with her, Megan offers to come over and just snuggle in bed with her.  While the 3 of us were out for a fun day this summer, Leah had an episode and became very sleepy, Megan too "got very tired" and the sight of the two of them snuggled together in the back seat, Megan supporting Leah's head on her shoulder pretending to be in need of a nap too, just so Leah wouldn't feel bad moved me to tears.

Megan's mom is a teacher at their school and lucky for us, she teaches right across the hall from Leah's classroom.  She is going to be the school's first option when Leah needs help or assessment.  In the event that Leah faints/collapses again at school, she has already made arrangements to switch classes with the teacher and stay with Leah until medical help can arrive.  We are blessed to have that family in our lives and I can't thank them enough for the feeling of comfort and peace it gives me to know she is just a holler away should anything occur.

Leah and I went to school early this morning to brief her teacher on Leah's condition and symptoms.  Poor woman is hugely pregnant and looked a little freaked out by the time I was finished, but she was clear on what to do and we will be meeting again by the end of the week with the principal and the Resource teacher to develop a full emergency plan for Leah, that will be available and reviewed with all the staff at the school.  The plan gives them step by step instructions on what to do in each situation, has her picture on it, and all of our contact numbers.

We have also met with our paediatrician to get a status update.  Unfortunately, nothing much has changed.  Her EEG was clear, but according to my research and other doctors, that is not uncommon.  So another one has been booked at McMaster on Sept 15th.  We are still waiting and hoping for a call for the MRI.  I had her put on the cancellation list, but so far we haven't been called in early.  So we will probably still be waiting until Nov 5th, which is our scheduled date.  He seems to really be leaning towards epilepsy, but has mentioned narcolepsy and due to a newspaper article that caught our eye, we are also looking into a heart condition called  catecholaminergic polymorphic ventricular tachycardia (CPVT), an electrical disorder of the heart that is induced by physical or emotional stress.

I had really hoped that by the time school started back I would have some answers, but instead, it would appear we only have more questions.

As always, please share with friends and families and send me any ideas, thoughts or advice you may have.

Thanks for reading!

Kate and Leah