April's Update - Good News Only..

My apologies go out to everyone for the extended silence.  Our lack of progress and a couple of set backs has me very tempted to rant and rave, so I have been trying very hard to take Thumper's advice.

So lets just focus on the good things, we just got Leah's most recent bloodwork and ultrasound results back and they were both good!  This is the first time since August that she hasn't had to change her dosages, her thyroid tests were exactly at the midpoint of the ranges.

Her thyroid ultrasound showed very minimal change to the nodule.  Due to the pancake shape of the nodule, they are unable to do the Fine Needle Biopsy as the thinness precludes them being able to get a good sample.  This is giving me many sleepless nights and minor heart palpitations when I think about it, so I am doing my best not to dwell.  Our only other option is to have her thyroid removed completely and that is just way too drastic.

Her weight is holding steady at around 54 lbs, she has grown 1/2" and her attendance at school while not perfect is still so much better than last year.

May 21st Leah and I return to London Children's Hospital for her VEEG.  As you can see from the article below, the hospital had a refit a couple of years ago and now offers a "state of the art" VEEG unit.  I am hoping we get some more reliable results than her last one.  

Epilepsy treatment goes high-tech at London Health Sciences Centre

(LONDON, Ontario) - The Epilepsy Unit at London Health Sciences Centre (LHSC) has been refitted with the most state-of-the-art equipment to monitor and investigate epileptic seizures. The new equipment will provide more accurate and efficient detection of seizures to determine whether patients are candidates for surgery to help stop the seizures. LHSC's Epilepsy Unit is the largest of its kind in Canada and a world leader in epilepsy treatment.

Each of the eight beds in the unit will now be equipped with a colour video camera, microphone, and a cutting-edge version of equipment which traces electrical impulses in the brain, called an EEG (eletroencephalogram). Physicians and staff will now be able to monitor patients 24-hours a day, without interruption, and capture seizures and pinpoint their origin in the brain as they happen.

Understanding exactly where seizures begin in the brain is key to determining if surgery is an option. The audio and video equipment is inconspicuous and mounted in the ceiling so it's not intrusive to patients. The video equipment, which also has infrared capabilities to view patients sleeping at night, will provide an opportunity to record and see physically what happens to a patient during a seizure.

The new technology also provides for remote monitoring. Patients can leave the unit and walk to other parts of the hospital and still be monitored. Physicians and staff can also access the live EEG recording and video of a patient from any of LHSC's three campuses.
Dr. Samuel Wiebe (weeb), Neurologist and Director of LHSCs Epilepsy Program, says, "This incredible new technology will provide us with even greater precision in detecting where in the brain the seizures begin, and continuous monitoring gives us the capability to capture more seizures over a shorter period of time. It's a huge step forward in helping our patients. It also means patients will now spend less time in the hospital, and they will know sooner whether surgery is an option."
LHSC purchased the new equipment from XLTEK for just over $890,000. Dr. Wiebe and the Epilepsy team are also working with XLTEK to develop non-invasive technologies to view the origin of seizures in the brain through Magnetic Resonance Imaging (MRI).

London Health Sciences Centre (LHSC)
Epilepsy Unit - Fact Sheet

• The unit is the largest of its kind in Canada and a global leader in epilepsy treatment. Dr. Samuel Wiebe is the Director of LHSC's Epilepsy Program. The unit is located at LHSC's University Campus in London, Ontario.
• LHSC's Epilepsy Program began in 1974. A four-bed unit opened in 1986. The unit expanded to the current eight-bed unit in 1993.
• Approximately 250 patients are cared for each year in LHSC's epilepsy unit. The majority of patients are from Southwestern Ontario, however, the unit is also a national referral centre for epilepsy. The unit has also treated some international patients.
• EEG (electroencephalogram): A recording of the electrical impulses of the brain.
• Definition of Epilepsy: The word "epilepsy" is derived from the Greek word meaning a condition of being overcome, seized or attacked. Epilepsy is not a disease. It is a symptom of a neurological disorder - a physical condition - that from time to time produces brief disturbances in the normal electrical functions of the brain. Epilepsy is characterized by sudden, brief seizures whose nature and intensity vary from person to person.
• A seizure may appear as a brief stare, an unusual movement of the body, a change in awareness, or a convulsion. A seizure may last a few seconds or a few minutes. Not all seizures indicate that a person has epilepsy.
• Approximately 1 per cent of the population, about 300,000 Canadians have epilepsy.
• Each day in Canada, an average of 34 people learn that they have epilepsy.
• Each year an average of 14,000 people learn that they have epilepsy; 3,200 are children under the age of 10, and 3,936 are over the age of 60. This means about 60 per cent of new patients are young children and senior citizens.
• The major form of treatment is long-term drug therapy. Drugs are not a cure and can have numerous, sometimes severe, side-effects.
• Brain surgery is recommended when the seizures are confined to one area of the brain where brain tissue can be safely removed without damaging personality or function.

Leah has in addition to her massage therapy for chronic aches and pain, has been seeing a chiropractor.  Dr. Todd Watson at Advanced Chiropractic Clinic has been a real boon for Leah.  At the very beginning he did an incredibly thorough exam, history, took baseline data for her movements, took pictures and xrays.  Her lower spine had developed a curve, she had forward head posture and tilted a bit to one side.  As well, she had a gait analysis and we discovered that she had also developed flat feet.  These changes were relatively new, as she had been assessed by both the Niagara Peninsula Children's Centre and a chiropractor less than two years ago.

Next week Leah goes to get her brand new orthotics and we are going today to find some brightly coloured (her request) new shoes - she is hoping for neon.

 

And finally, Leah is heading to an allergist for some preliminary testing.  Since her bloodwork consistently shows her  Esinophils and IGE as elevated; we felt it was best to see what her body is reacting to.  It is our hope that if we remove those reactions, we can tame her body's overactive immune response and thereby minimize the attacks on her thyroid and brain.

Oh! And on the NEATO list...we have been asked to submit Leah's story for a book about Hashimoto's Encephalopathy.  It will be the first book focused on first person accounts of their struggle with HE.  People from around the world will be contributing.  They plan on having a pediatric section which is so So SO important since it is appallingly under-diagnosed in children!