Here is a story I will share with all about a nice lady I met through e-mail and on line. She has her experiences with Dysautonomia and she gave me permission to share her story with all of you. Below her story will be her information and her phone number if you like to contact her. Her story inspired me and I hope it will do the same for those who are interested. Enjoy this blog. xoxo Miss Vivian
At the age of 13, Amanda, an aspiring musical theatre actress,
started touring professionally with “The Sound of Music” across the
state of Florida. She attended school part-time. After winning many
awards and training in New York, her future looked bright. She was
accepted into the renowned Dreyfoss School of Fine Arts and chosen
for the first-ever American Idol camp. Her life was just beginning.
By the end of her tour and the last few months of 8th grade
she began to get strange ailments. It started with stomach aches and
severe nausea that caused her to miss school. She underwent numerous
tests, including colonoscopies and MRIs. Nothing could be found.
Then she was afflicted with severe pain in her arms and legs.
Symptoms of weakness, dizziness and heart palpitations followed in
quick succession. Her body pain became intense. She felt like she was going
to pass out at any moment. Every morning she would go to school only to call me within
an hour needing to come home. There were times when she could
barely walk.
My husband and I took her to the doctor almost every other
day. The doctor was perplexed and thought that she had developed
some kind of school phobia. Soon, Amanda couldn’t finish school.
Every day she would tell us she wasn’t afraid of school; that she was just
sick. We didn’t know what to think or do.
Then summer came around. Without school as a possible issue, she
was still almost totally disabled. She could walk a little bit but soon
after standing, she’d have to stop and sit down. She was plagued daily
with such physical pain that even large dosages of Tylenol and other pain
relievers would not put a dent in it. Her stomach pain was so severe that
we took her to the hospital to rule out Appendicitis, cysts, etc. She had this
stomach pain a few times a day on average. Every day felt like an
emergency. The whole summer was a wash. Every day my
goal was just to get her to walk.
When the new school year came around, she started a new school.
She could barely make it through an hour. When she was home,
she complained of the dizziness, chest pain, weakness, etc. Fortunately,
my husband who is a doctor, had a pulse meter in the house and took her
pulse. It was 160. A pulse should never be above 100. He sent us directly
to Cleveland Clinic.
Cleveland Clinic ran a slew of tests but the doctors could not figure
out why her pulse was so high and her blood pressure was so low.
When she lay down on the bed, it was 100 and when she lifted her head
it was 120 and when she stood up it rose to 160. No one had ever seen
anything like it. The doctors sent her via ambulance to Joe DiMaggio
Children’s Hospital. During the ambulance ride her blood pressure
dropped dangerously low.
She was checked in for many nights at Joe DiMaggio but these doctors
also could not figure out what was wrong. They arrived at the diagnosis
that she had a virus even though she had no other symptoms. From lying
down for days, her pulse did change enough to send her home
but it still wasn’t normal.
The next day her pulse was back up so her pediatrician sent her to a
pediatric cardiologist. She could not walk around with her pulse so
dangerously high. We went to the cardiologist whose soon felt he might
know what was going on. He said he would need to do a test in the
hospital to see if his suspicions were correct. Within a day, Amanda
checked into the hospital to do a Tilt Table Test.
During this test, Amanda was strapped to a table lying down with
electrodes attached to her to see what happened to her heart rate when
she was forced to stand up (Amanda would sit or lay down when she
felt weak or dizzy). Within 1-2 minutes of merely standing she totally
passed out. The doctors informed me that during this test some kids had
their hearts actually stop. Luckily for Amanda, hers did not. This test
confirmed the doctor’s suspicions. Amanda was diagnosed with POTS
or Postural Orthostatic Tachycardia, which is a symptom of
a larger problem – Dysautonomia.
Finally, she received a diagnosis! I thought we had found an answer
at last and maybe now she could get fixed. Not so fast, I learned.
This illness is not easily understood or treated. The local doctor followed
the normal protocol of treatment but nothing was working. Amanda had no
improvement nor could she go back to school. We were getting desperate.
Out of desperation and lots of research, my husband contacted the
world’s leading expert, author and researcher for Dysautonomia, Dr.
Blair Grubb, in Toledo, Ohio. He had a 6-month waiting list but out
of professional courtesy, agreed to see Amanda. He diagnosed her with
the same illness. He was wonderful and spent hours with us explaining
how this illness affects many teenagers right after puberty and how its
mechanisms are still unknown. He said only a small amount of people get
helped by the normal protocol and basically, Amanda and about half of those
afflicted by it, grow out of it by the age of 20. He said most of his patients
required wheel chairs and we should be grateful she could even walk .
He would continue to try new treatments, working through our local cardiologist.
Needless to say, when we came home we were baffled. We saw the
world’s leading expert but nothing seemed to help Amanda. From what
the doctor told us and from all the stories we had read online, we could
only treat the symptoms as they appeared.
For about 6 months we were happy to have a diagnosis, but it didn’t help
Amanda. She could not attend school nor continue to be a normal teenager.
Every day she would complain of pain, nausea, dizziness, etc. I actually
started counting her complaints to myself because it was so crazy. She
complained 30-50 times a day and there was nothing anyone could do but
give her hot baths, back rubs and Tylenol. None of this helped her.
She even went to a pain clinic and nothing relieved her pain.
Amanda was obviously on a mental decline. She would ask me, between
sobs of pain, why this was happening to her. I would tell her that there is
a reason for even the bad things we go through in life. I told her that while
she may not understand why she was suffering, she might end up
helping someone else one day – little did we know that she would!
Every day, my only break from the stress would be to walk on the
treadmill. I would research Dysautonomia online for hours on end.
It turns out that there are a few websites dedicated to this condition
because so many teens have it and are desperate to be helped. I could not
stop studying, researching, reading. I was motivated by my own
obsessive/compulsive nature and the desperation of having a daughter in
pain. I printed everything I could print on this illness. I soon had binders
of information which I studied over and over again. Then I came across
an article written by the expert we had seen in Toledo.
It was a research article he had written over 10 years prior. According to
his study, certain antidepressants helped people who had the genetic form of
Dysautonomia. At the time, Amanda was diagnosed with the
Dysautonomia that appears after puberty. None of us had any cause
to believe that it was a genetic form of Dysautonomia (Of course, we later
found out that she indeed had this form). Me being adopted from birth
and not knowing my own genetic history certainly didn’t help either.
Next, I went to one of her local doctors with this research in hand. I asked him if he would consider giving her a high dosage to see if it helped. Basically, she could not get any worse than
she already was. After careful consideration, and after reading the
research , he agreed to try it. Thank God for him.
This is where the story takes an amazing turn. When Amanda got to the high adult level of the medicine, she became symptom free. When I say she got better, I am amazed to testify that
she went from 30-50 complaints a day and basically disabled to symptom-free.
It didn’t happen gradually as one might expect, but immediately.
Every day I would wait for a symptom to come back. Could it be
remission? But time went by and no symptoms returned. I went online to
the Dysautonomia chat lines and was advised that no one ever had a
remission for longer that possibly a week or two. And weeks had gone
by with no problems at all.
Soon Amanda went back to school part-time. She had no complaints.
Then she went full-time. She ended up being involved with the school acting
troupe and practiced for many hours. There still were no symptoms
at all. The doctors were not sure what to think. Was it luck? Did she
just grow out of it suddenly or was it the high dosage of new medicines? No one was sure but we were not about to question it.
Amanda was better and that was all that mattered.
A year went by and I never again visited the websites or let the doctor
in Toledo know how she was “fixed.” I honestly never wanted to think
about those miserable days ever again. Until one day.
One day, over 14 months later, my younger daughter Jessica, who was
12, got very ill. At first we just thought she was getting an ordinary
illness. But soon things changed. Se developed severe headaches and
nausea with severe stomachaches. She ended up in the hospital twice in
a week. We had her tested, thinking it would pass. Then she started to
complain of arm, leg pain, dizziness, and chest pain. The doctors all
said that we should keep an eye out for the same condition Amanda had
but we never dreamed we could have another child with such a rare
ailment. Then one day we checked her pulse. It was all over the place.
She ended up in Miami Children’s Hospital with Gastro paresis (paralyzed
stomach). The doctors advised us that the only children who get this
are those who suffer from diabetes and Dysautonomia. Soon after this
incident, Jessica was also diagnosed with Dysautonomia. She developed
it at almost the exact age as her sister. It turned out it was genetic. She
was also very ill and missed three months of school.
Amanda came to me and asked, “Do you remember how you used to
tell me that I had this illness for a reason? Now Jessica won’t have to
suffer so long like me because we figured out what medicines she
should take.” She was right. Immediately, we put Jessica on the same
medicine as Amanda. Within a few days of taking the higher dosage,
all of her symptoms disappeared. Jessica has now been 3 months
symptom-free.
Now for another interesting part of the story. One may ask how a
stay-at-home mom knew to try the higher dosage of medicine when
the leading hospitals as well as the world’s top expert did not think
to do so. This is a part of the story that I did not think was relevant
until just recently when Jessica got sick and the same medicines
helped her.
It goes back to about three or four years after the birth of Amanda.
I felt very ill. I had severe gastrointestinal issues that left me 30 lbs.
lighter than I am now. I was nauseous every day. I had pain in all of
my extremities. I felt like I was going to pass out many times. I was
tested and hospitalized but nothing was ever found. I was so ill that
I would have a hard time even standing in church. I didn’t know what
was happening. The doctor tried a medicine on me just to see if it would help, not knowing for sure what was wrong.
Soon thereafter my symptoms went away and for years I was fine.
I decided that I was older I could take myself off the
meds (this was all before Amanda ever got sick). The symptoms
all came back. The doctors again couldn’t figure it out. Every other
day I would be on the brink of passing out. I again got hospitalized
for mysterious ailments like severe dehydration or because I felt
like I was going to faint at any moment.
Finally, I realized when I was on the meds I was fine but when I
was off, it was physical chaos. I figured that my body just needed the
medicine at that time. Years later, after Amanda got sick and I started
doing the research, I came across the article written by Dr Grubb
about how certain adult medicines helped some patients. I began to believe
that I was one of them. I remembered my own experience 10 years
earlier and went back to the doctor who treated me and knew
Amanda’s story. He checked my records and he saw that I had come
to see him with the exact complaints that Amanda had experienced.
When I showed him the research from Dr. Grubb, he took a chance
with my genetic theory, and the rest is now history.
Soon after Amanda started taking the same medicines as I did,
Amanda’s symptoms disappeared. I thought it was my theory that
had cured her, but really didn’t think much of it again. She was better
and that was the end of it. Then, boom! My other daughter gets this
dreaded illness. It was no coincidence. I realized that my far-fetched
theory isn’t a theory at all. There is obviously a genetic link here and
that is why the meds worked. They fixed me, Amanda, and Jessica.
The research I read claims that these adult high-level medicines have only worked on genetic forms of Dysautonomia. It also states that it is passed from mother to daughter. This is why they were the key to our cure.
Armed with this information, I next went to the
Genetics doctor. He reviewed the records and examined Jessica and
Amanda. He concluded that there definitely is a genetic link. Unfortunately, the researchers at Vanderbilt University and other research physicists only study this gene. He has recently contacted them with this story so they can possibly consider higher dosages of these medicines for treatment of
this form of Dysautonomia. Presently they are about to place the story in th New England Journal of Medcine. The researchers are hopeful and will be broading thier studies.
My husband asked me why I went to see the genetic doctor when our
children are basically well. There are a few reasons. When Amanda
recovered I never again wanted to revisit this topic because it was
too painful. But when Jessica developed the same condition and was
cured by the same medicines due to Amanda’s experience, I realized
that there really was a reason for Amanda’s travails. I also
feel that the word has to get out to the researchers because if this
information can help one child avoid the suffering and pain, it will be
worth the journey.
Update- Jessica symtpom free 15 months. Amanda over 2 years.
Locallly others have been seeing results from hearing this story.
I also have been contacted as well as consulted with many doctors and hospitals.
Sincerely,
Kelly Ruggiero
President
Children's Dysautonomia Foundation
Mrs. Broward County
HYPERLINK "mailto:Kelly0770@comcast.net" Kelly0770@comcast.net
954 346-7746
561 306-4448
7611 Marblehead Lane Parkland
Florida 33067
At the age of 13, Amanda, an aspiring musical theatre actress,
started touring professionally with “The Sound of Music” across the
state of Florida. She attended school part-time. After winning many
awards and training in New York, her future looked bright. She was
accepted into the renowned Dreyfoss School of Fine Arts and chosen
for the first-ever American Idol camp. Her life was just beginning.
By the end of her tour and the last few months of 8th grade
she began to get strange ailments. It started with stomach aches and
severe nausea that caused her to miss school. She underwent numerous
tests, including colonoscopies and MRIs. Nothing could be found.
Then she was afflicted with severe pain in her arms and legs.
Symptoms of weakness, dizziness and heart palpitations followed in
quick succession. Her body pain became intense. She felt like she was going
to pass out at any moment. Every morning she would go to school only to call me within
an hour needing to come home. There were times when she could
barely walk.
My husband and I took her to the doctor almost every other
day. The doctor was perplexed and thought that she had developed
some kind of school phobia. Soon, Amanda couldn’t finish school.
Every day she would tell us she wasn’t afraid of school; that she was just
sick. We didn’t know what to think or do.
Then summer came around. Without school as a possible issue, she
was still almost totally disabled. She could walk a little bit but soon
after standing, she’d have to stop and sit down. She was plagued daily
with such physical pain that even large dosages of Tylenol and other pain
relievers would not put a dent in it. Her stomach pain was so severe that
we took her to the hospital to rule out Appendicitis, cysts, etc. She had this
stomach pain a few times a day on average. Every day felt like an
emergency. The whole summer was a wash. Every day my
goal was just to get her to walk.
When the new school year came around, she started a new school.
She could barely make it through an hour. When she was home,
she complained of the dizziness, chest pain, weakness, etc. Fortunately,
my husband who is a doctor, had a pulse meter in the house and took her
pulse. It was 160. A pulse should never be above 100. He sent us directly
to Cleveland Clinic.
Cleveland Clinic ran a slew of tests but the doctors could not figure
out why her pulse was so high and her blood pressure was so low.
When she lay down on the bed, it was 100 and when she lifted her head
it was 120 and when she stood up it rose to 160. No one had ever seen
anything like it. The doctors sent her via ambulance to Joe DiMaggio
Children’s Hospital. During the ambulance ride her blood pressure
dropped dangerously low.
She was checked in for many nights at Joe DiMaggio but these doctors
also could not figure out what was wrong. They arrived at the diagnosis
that she had a virus even though she had no other symptoms. From lying
down for days, her pulse did change enough to send her home
but it still wasn’t normal.
The next day her pulse was back up so her pediatrician sent her to a
pediatric cardiologist. She could not walk around with her pulse so
dangerously high. We went to the cardiologist whose soon felt he might
know what was going on. He said he would need to do a test in the
hospital to see if his suspicions were correct. Within a day, Amanda
checked into the hospital to do a Tilt Table Test.
During this test, Amanda was strapped to a table lying down with
electrodes attached to her to see what happened to her heart rate when
she was forced to stand up (Amanda would sit or lay down when she
felt weak or dizzy). Within 1-2 minutes of merely standing she totally
passed out. The doctors informed me that during this test some kids had
their hearts actually stop. Luckily for Amanda, hers did not. This test
confirmed the doctor’s suspicions. Amanda was diagnosed with POTS
or Postural Orthostatic Tachycardia, which is a symptom of
a larger problem – Dysautonomia.
Finally, she received a diagnosis! I thought we had found an answer
at last and maybe now she could get fixed. Not so fast, I learned.
This illness is not easily understood or treated. The local doctor followed
the normal protocol of treatment but nothing was working. Amanda had no
improvement nor could she go back to school. We were getting desperate.
Out of desperation and lots of research, my husband contacted the
world’s leading expert, author and researcher for Dysautonomia, Dr.
Blair Grubb, in Toledo, Ohio. He had a 6-month waiting list but out
of professional courtesy, agreed to see Amanda. He diagnosed her with
the same illness. He was wonderful and spent hours with us explaining
how this illness affects many teenagers right after puberty and how its
mechanisms are still unknown. He said only a small amount of people get
helped by the normal protocol and basically, Amanda and about half of those
afflicted by it, grow out of it by the age of 20. He said most of his patients
required wheel chairs and we should be grateful she could even walk .
He would continue to try new treatments, working through our local cardiologist.
Needless to say, when we came home we were baffled. We saw the
world’s leading expert but nothing seemed to help Amanda. From what
the doctor told us and from all the stories we had read online, we could
only treat the symptoms as they appeared.
For about 6 months we were happy to have a diagnosis, but it didn’t help
Amanda. She could not attend school nor continue to be a normal teenager.
Every day she would complain of pain, nausea, dizziness, etc. I actually
started counting her complaints to myself because it was so crazy. She
complained 30-50 times a day and there was nothing anyone could do but
give her hot baths, back rubs and Tylenol. None of this helped her.
She even went to a pain clinic and nothing relieved her pain.
Amanda was obviously on a mental decline. She would ask me, between
sobs of pain, why this was happening to her. I would tell her that there is
a reason for even the bad things we go through in life. I told her that while
she may not understand why she was suffering, she might end up
helping someone else one day – little did we know that she would!
Every day, my only break from the stress would be to walk on the
treadmill. I would research Dysautonomia online for hours on end.
It turns out that there are a few websites dedicated to this condition
because so many teens have it and are desperate to be helped. I could not
stop studying, researching, reading. I was motivated by my own
obsessive/compulsive nature and the desperation of having a daughter in
pain. I printed everything I could print on this illness. I soon had binders
of information which I studied over and over again. Then I came across
an article written by the expert we had seen in Toledo.
It was a research article he had written over 10 years prior. According to
his study, certain antidepressants helped people who had the genetic form of
Dysautonomia. At the time, Amanda was diagnosed with the
Dysautonomia that appears after puberty. None of us had any cause
to believe that it was a genetic form of Dysautonomia (Of course, we later
found out that she indeed had this form). Me being adopted from birth
and not knowing my own genetic history certainly didn’t help either.
Next, I went to one of her local doctors with this research in hand. I asked him if he would consider giving her a high dosage to see if it helped. Basically, she could not get any worse than
she already was. After careful consideration, and after reading the
research , he agreed to try it. Thank God for him.
This is where the story takes an amazing turn. When Amanda got to the high adult level of the medicine, she became symptom free. When I say she got better, I am amazed to testify that
she went from 30-50 complaints a day and basically disabled to symptom-free.
It didn’t happen gradually as one might expect, but immediately.
Every day I would wait for a symptom to come back. Could it be
remission? But time went by and no symptoms returned. I went online to
the Dysautonomia chat lines and was advised that no one ever had a
remission for longer that possibly a week or two. And weeks had gone
by with no problems at all.
Soon Amanda went back to school part-time. She had no complaints.
Then she went full-time. She ended up being involved with the school acting
troupe and practiced for many hours. There still were no symptoms
at all. The doctors were not sure what to think. Was it luck? Did she
just grow out of it suddenly or was it the high dosage of new medicines? No one was sure but we were not about to question it.
Amanda was better and that was all that mattered.
A year went by and I never again visited the websites or let the doctor
in Toledo know how she was “fixed.” I honestly never wanted to think
about those miserable days ever again. Until one day.
One day, over 14 months later, my younger daughter Jessica, who was
12, got very ill. At first we just thought she was getting an ordinary
illness. But soon things changed. Se developed severe headaches and
nausea with severe stomachaches. She ended up in the hospital twice in
a week. We had her tested, thinking it would pass. Then she started to
complain of arm, leg pain, dizziness, and chest pain. The doctors all
said that we should keep an eye out for the same condition Amanda had
but we never dreamed we could have another child with such a rare
ailment. Then one day we checked her pulse. It was all over the place.
She ended up in Miami Children’s Hospital with Gastro paresis (paralyzed
stomach). The doctors advised us that the only children who get this
are those who suffer from diabetes and Dysautonomia. Soon after this
incident, Jessica was also diagnosed with Dysautonomia. She developed
it at almost the exact age as her sister. It turned out it was genetic. She
was also very ill and missed three months of school.
Amanda came to me and asked, “Do you remember how you used to
tell me that I had this illness for a reason? Now Jessica won’t have to
suffer so long like me because we figured out what medicines she
should take.” She was right. Immediately, we put Jessica on the same
medicine as Amanda. Within a few days of taking the higher dosage,
all of her symptoms disappeared. Jessica has now been 3 months
symptom-free.
Now for another interesting part of the story. One may ask how a
stay-at-home mom knew to try the higher dosage of medicine when
the leading hospitals as well as the world’s top expert did not think
to do so. This is a part of the story that I did not think was relevant
until just recently when Jessica got sick and the same medicines
helped her.
It goes back to about three or four years after the birth of Amanda.
I felt very ill. I had severe gastrointestinal issues that left me 30 lbs.
lighter than I am now. I was nauseous every day. I had pain in all of
my extremities. I felt like I was going to pass out many times. I was
tested and hospitalized but nothing was ever found. I was so ill that
I would have a hard time even standing in church. I didn’t know what
was happening. The doctor tried a medicine on me just to see if it would help, not knowing for sure what was wrong.
Soon thereafter my symptoms went away and for years I was fine.
I decided that I was older I could take myself off the
meds (this was all before Amanda ever got sick). The symptoms
all came back. The doctors again couldn’t figure it out. Every other
day I would be on the brink of passing out. I again got hospitalized
for mysterious ailments like severe dehydration or because I felt
like I was going to faint at any moment.
Finally, I realized when I was on the meds I was fine but when I
was off, it was physical chaos. I figured that my body just needed the
medicine at that time. Years later, after Amanda got sick and I started
doing the research, I came across the article written by Dr Grubb
about how certain adult medicines helped some patients. I began to believe
that I was one of them. I remembered my own experience 10 years
earlier and went back to the doctor who treated me and knew
Amanda’s story. He checked my records and he saw that I had come
to see him with the exact complaints that Amanda had experienced.
When I showed him the research from Dr. Grubb, he took a chance
with my genetic theory, and the rest is now history.
Soon after Amanda started taking the same medicines as I did,
Amanda’s symptoms disappeared. I thought it was my theory that
had cured her, but really didn’t think much of it again. She was better
and that was the end of it. Then, boom! My other daughter gets this
dreaded illness. It was no coincidence. I realized that my far-fetched
theory isn’t a theory at all. There is obviously a genetic link here and
that is why the meds worked. They fixed me, Amanda, and Jessica.
The research I read claims that these adult high-level medicines have only worked on genetic forms of Dysautonomia. It also states that it is passed from mother to daughter. This is why they were the key to our cure.
Armed with this information, I next went to the
Genetics doctor. He reviewed the records and examined Jessica and
Amanda. He concluded that there definitely is a genetic link. Unfortunately, the researchers at Vanderbilt University and other research physicists only study this gene. He has recently contacted them with this story so they can possibly consider higher dosages of these medicines for treatment of
this form of Dysautonomia. Presently they are about to place the story in th New England Journal of Medcine. The researchers are hopeful and will be broading thier studies.
My husband asked me why I went to see the genetic doctor when our
children are basically well. There are a few reasons. When Amanda
recovered I never again wanted to revisit this topic because it was
too painful. But when Jessica developed the same condition and was
cured by the same medicines due to Amanda’s experience, I realized
that there really was a reason for Amanda’s travails. I also
feel that the word has to get out to the researchers because if this
information can help one child avoid the suffering and pain, it will be
worth the journey.
Update- Jessica symtpom free 15 months. Amanda over 2 years.
Locallly others have been seeing results from hearing this story.
I also have been contacted as well as consulted with many doctors and hospitals.
Sincerely,
Kelly Ruggiero
President
Children's Dysautonomia Foundation
Mrs. Broward County
HYPERLINK "mailto:Kelly0770@comcast.net" Kelly0770@comcast.net
954 346-7746
561 306-4448
7611 Marblehead Lane Parkland
Florida 33067
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