MRI results

Today was the day Leah had her appointment with Dr. Hallett.  Leah was having a bit of an off morning and it shouldn't have been a surprise for me when she had an episode right in the middle of the exam...but it was, it caught all of us completely by surprise.

But wait, let me back up a little, Dr. Hallett is the Consulting Paediatrican from McMaster.  She is kind of like a Dr. House for kids.  When children develop problems that their regular Paediatrician, General Practitioner or Emergency Department can't handle/diagnose, they send them to the Consulting Paediatrican.  We got referred to
Dr. Hallett through the McMaster emergency department.  She is the doctor that finally gave us the referral for an MRI after we had been turned down by everyone else.

So we head off to Stoney Creek this morning, hit every red light on Centennial Parkway and show up 7 mins late.  With many apologies I got her checked in and then sat and waited and waited.  The appointment was for 10:30am, at 11:05am, I was consoling another mother.  She had already been waiting for 45mins for their first appointment.  I calmly explained to her that Dr. Hallett is totally worth the wait, our previous appointment had lasted over an hour.  She listens, does a very thorough exam, chats with the child, asks lots of questions and never makes you feel rushed.

I think we finally made it into the exam room at about 11:30am, we met with her "Fellow", a kind of assistant or Doctor in Training or something.  Anyway, she was extremely nice, friendly and thorough.  She listened attentively as I ran through Leah's history and took copious notes.  Then she started a physical exam.  As of today, Leah is 48 inches tall and 52lbs. 

According to a Growth Chart Percentiles calculator
At 7 years and 6 months:
your child is 52 pounds, and that is
at the 43rd percentile for weight.
your child is 45.5 inches, and that is
at the 4th percentile for height.

She then took Leah's blood pressure sitting, standing and then again after standing up quickly.  She was about to have Leah run on the spot when Leah suddenly plopped down on the chair.  She wouldn't speak, wouldn't explain what was wrong.  She only wanted to climb onto my lap.  Her pupils were huge, she was cold and she began to cry.  The assistant got her onto the exam table and checked her out then went to inform Dr. Hallett.  They were gone for quite a bit, during which Leah wiggled her way further and further onto me and off the table.

Finally, they came back.  They had called McMaster and gotten the results of the MRI Leah had a week ago.  Leah has "Non Specific Changes in the White Matter" of her brain.

The appointment ended quickly at that point.  It went without saying, that Leah was done for the day.  We were sent home with a promise that she would be contacting Neurology herself and SHE WOULD get us an appointment.

A few snippets about White Matter Changes

• White matter refers to the fibre tracts that carry information to and from the brain.
• The brain is made up of gray matter and white matter.
• White matter is where the hardware connects to carry messages to the areas of the brain.
• The brain is about 60 percent white matter.
• White matter changes are an extremely common finding in the MRI scan.
• White matter changes are commonly seen in demyelinating diseases.

Now we wait, again.

Tonight I can't decide if I want to waste my energy being mad at all the doctors that told us a MRI would be useless to us; that because the CT Scan was fine, an MRI wasn't necessary.   One side of me wants to call up our paediatrican and just let loose, but the other saner side says what would be the point.   I am however interested to see what he has to say when he receives the results.

Would it be out of line to needle him about it just a little bit?  I think I am petty enough to get some enjoyment out of that.

As always, please pray that we get the answers we are searching for, we might just be on the right path this time.

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.