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.