Download Undiagnosed Diseases Program Frequently Asked Questions

Ambassador of Hope – Brooklyn Mills
Ehlers Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome, Dysautonomia, G.I. and
Malabsorption, Tethered Cord,
Chiari Malformation
As Program and Executive Director of ILC, my relationship with Brooklyn Mills and her family and that of other client
families, is one of peer support. It is an honour and a privilege to be trusted by these families as they share their fears, their
frustrations and, at times, the devastation of a life changed forever by chronic pain disease. The privilege is to provide peer support
that includes fostering health promotion education and knowledge transfer across the spectrum of care in a peer centric model:
parent-to-parent; child-to-child; youth-to-youth; young adult-to-young adult; and, medical professional-to-medical professional.
Advocating, to ensure that introductions to the appropriate medical professionals are made, is a major roll that ILC plays in the goal
to Improve the Life of Children that suffer with chronic pain disease.
The Declaration of Montreal states that it is a fundamental human right that all people have access to pain management
without discrimination; The right of people in pain, in the acknowledgment of their pain and to be informed about how it can be
assessed and managed; The right of all people with pain to have access to appropriate assessment and treatment of the pain by
adequately trained health care professionals. So, too, must the investigation of best care practices for quality of life, be considered.
Without best care practices, mental health is adversely affected and palliative care becomes a best care practice outcome.
Brooklyn Mills and her peer group are humbling inspirations. With a view to provide a glimpse of Brooklyn’s journey as
the ILC Ambassador of Hope, to ensure that no other family endures as she has, the following are health issues and comments from
medical professionals, of which some are shocking. Brooklyn’s circumstances and the comments quoted below are meant to bring
rise to why ‘falling between the cracks’ happens, despite the efforts of multidisciplinary teams and declarations:
Greater Toronto & International Hospitals – As a young child and from 2008 to Present:

As a young child, whites of eyes very blue and many GI issues - not addressed

Acute lower back pain – “the pain will likely settle over time – cheerleading may have to be given up, or live with
pain.”

“Your daughter, likely, has an eating disorder”

“The pain is in her head”

“Kowtowing to her every request is doing more harm than good”

“She is likely spoiled, like most teens these days that become so emotional. We should try psych meds”

Brooklyn’s parents’ request to consult with geneticist was not only denied but BLOCKED (medical file notes)

Discharged from hospital on major list of psych/pain medications, no answers to why she was in so much pain with so
many body systems affected. Brooklyn’s parents had to rent a hospital bed and wheelchair without support from CCAC.
Darkest days for parents as no one, at either hospital, offered any support, guidance, be it medical or otherwise.

“Let’s get out of here before we lose a child on our watch, wasting our time…”


Acute pain (Brooklyn manages her ever present chronic pain through mindfulness, courage, strength and resolve), unable
to eat, throwing up water, Dysautonomia, double vision, numbness in arm, migraine: after 3 weeks in hospital “we have
not been able to identify a specialist to help us care for your complex health issues, the best we can offer is to change
your pain meds appropriate for home care and organize CCAC home support (palliative).”
o
Not stable enough to discharge, stayed in hospital for additional 5 weeks: procedures included Port-o-cath, picline,
catheter and feeding tube. Doctors provided ‘pass to leave hospital for 2 hours suggesting that fresh air at Queens
Park may do Brooklyn good’…Picline not wrapped and protected per usual Best Care Practice as with cancer
patients. Days later, Picline site redness, Brooklyn developed fever. Brooklyn’s mom asked about blood test to
determine if blood infection because of redness and increasing fever. Doctor put his hand up to quiet Mom to
say “I am talking to Brooklyn, (18 years old) asking, “Brooklyn, do you want to go home?” Discharged to
home care arranged…LESS THAN 12 HOURS LATER, rushed to local hospital by ambulance despite that
family live across the street - diagnosed with blood infection from picline site! One week stay at local community
hospital.
o
Despite no improvement in condition, Prior to discharge from GTA hospital, family identified Dr. Fraser
Henderson, Metropolitan Neurosurgery Group in Bethesda, MD as EDS expert. MRP agreed to write letter to
OHIP for Out of Province Care for a ‘Consult appointment’ with Dr. Henderson.
o
“I will not let you go until we figure things out together. You may not run a marathon, but you will have a
better quality of life.”
o
Dr. Fraser Henderson expertise identified Tethered Cord, Cervical Spin instability, incorrect feeding tube, spinal
compression cause of acute low back pain, lumbar puncture opening pressure over 25 cause of headache – Shunt
placement in abdomen to drain with valve set to maintain 10 to 12 pressure. Performed 5 surgical procedures:
Acute pain in back gone; feeling in arm restored; nausea gone; double vision better; brain fog improvement; cried
out loud because she could feel her toes after years of not being able; able to eat and drink without throwing up.
Feeding tube issues, migraine, acute back pain, Dysautonomia, not able to sit or stand, seizures: 8 week stay between two
hospitals with devastating neurological issues of incontinence on top of everything else. Tests at local hospital in
consultation with Dr. Fraser Henderson determined shunt failure. MRP challenged to secure specialized hospital transfer
to perform shunt revision surgery: Trillium, McMaster, Sunnybrook, Mount Sinai, Toronto Western. Oakville MPP
appealed to Hon. Deb Matthews with success to have Toronto hospital to accept patient transfer. Upon arrival at Toronto
hospital, doctors questioned shunt placement in first place. Drained spinal fluid at lumbar puncture, lowering pressure.
Re-tested opening pressure with another lumbar puncture to determine fluid increase. Surgery for shunt done with a
complete lack of investigation for how to care for complex needs of EDS patient – wrong shunt placed. Result: Low
pressure headache and through family discussions with Dr. Fraser Henderson, learned that when pressure changes
from high to low, temporary neurological symptoms occur including incontinence. 5 different pumps for meds, TPN,
fluids, catheter.
o
Parents requested complete copy of diagnostic file to send to Dr. Henderson for consult. Toronto hospital placed
request but was told they would have to go to another Toronto Hospital to get the file themselves. Hospital
Administration staff graciously offered to get file for parent given the extreme circumstances that included:
o
As a teenager, the embarrassing issue of incontinence required the Mom to provide this level of care. For Mothers
Day, Brooklyn asked that her Mom go home and spend day with her Dad and Brothers and that she would be fine
to be cared for by nursing staff for this personal care detail. The Mom, before leaving hospital to go home,
confirmed care for this detail with respect to incontinence and skin issues in an EDS patient. Twelve hours later,
when she returned to hospital, Brooklyn had not been changed once! Male nurse said: “I thought she would be
more comfortable to wait for a female nurse” … but hadn’t arranged for that to happen himself!
o
Rounds with Toronto doctors: “Maybe your pain is from being in bed for so long, let’s try and sit you up and
get you on a routine of physiotherapy…don’t you want to finish school?”
o
May 22, 2012 - Parents discharged Brooklyn under own care despite that she could not sit or stand. In a van with
a single bed mattress with cushions and blankets, parents left the Toronto hospital and drove 10 hours, directly to
the Ronald McDonald House in Maryland with scheduled surgery with Dr. Henderson the next day.

Blood work indicated iron levels so low that if infusions did not see timely result, she would have needed
a blood transfusion. This was a surprising outcome because Toronto hospital was doing daily blood tests
for TPN.

May 24, 2012 - In a five hour surgery, Dr. Henderson was able to do what Toronto doctors could not do
in 8 weeks: Shunt revision with valve set to correct opening pressure; Repaired 2 spinal fractures (cause
of back pain, likely happened when she fell from seizures). Incontinence issues resolved.
o
Two days following surgery, with support from Dr. Henderson, Brooklyn took a few short steps and sat in chair
for 20 minutes. Staying at Ronald McDonald House, to recover while remaining under Dr. Henderson’s care,
Brooklyn independently takes care of herself, getting in and out of her wheelchair, has taken many steps
unassisted, headache is gone, nausea gone, is eating like a horse, taking all meds by mouth and expects to have her
feeding tube removed before she returns home to Canada with hopes of enjoying a summer of poolside family and
friend fun, of which many friends have EDS as she is their hope!
o
“Brooklyn, please don’t wait so long to come and see me when you’re not feeling well.”

MRP’s/Specialists with heart: “I am embarrassed to say I am part of the Canadian medical profession to be denied
my own peer support…”

“Until now, I did not have an appreciation for what patients go through living with chronic pain”

“We are not going to talk about diagnostics…we are only teaching skills and providing tools to live life with pain…”
The development of the Difficult to Diagnose Diseases Program for Ehlers Danlos Syndrome, best-care practice guidelines,
is timely as international experts, respectfully welcome the opportunity to collaborate with a view to broaden the capabilities for
effective diagnosis, treatment and care for the vast number of people that suffer in silence with this disease.
The ILC Foundation, in its capacity to advocate for and co-fund the development of the Canadian Neurosurgery Training
Program under Dr. Fraser Henderson at the Metropolitan Neurosurgery Group, helps to bring hope to families.
Sandy
Saturday, June 09, 2012 –
Brooklyn Mills (centre) with her Mom, Rebecca (right)
and Aunt Melissa at the Unita@night walk for the Chiari
and Syringomyelia Foundation — at North Beach Boardwalk.
85% of Chiari patients live with Ehlers Danlos Syndrome.
The ILC Foundation Ambassador of Hope
Brooklyn Mills defines Strength, Courage, Resolve, Patience,
Faith and Inspiration!
This should be on the front page of every newspaper in Canada to express what can be done for
EDS/Chiari patients when expertise exists.
Brooklyn expects to return home in the next week or two. For the first time in four years, she is not
taking any pain medications; is managing her chronic pain mindfully; is taking all other meds by mouth;
eats three meals a day and snacks (dislocating all finger joints on 3 fingers trying to make her way into
a Tupperware container filled with chocolate muffins) and is excited to be having her feeding tube
removed before she leaves Dr. Henderson’s care!!!
Sandy