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June 2, 2014 | Happy 8th Birthday Caroline!
Advanced Treatments for Autism and Strategies for Non-
Responders
With the click of a button, Dr. Rossignol advances the overhead slide.
And there it is.
Lettering so bold, it's message couldn't possibly be lost on me.
"Treatment in OLDER Children"
My breath catches. The long days and short years have somehow piled
up. Wasn't it just yesterday I was the one taking copious notes at "Intro to
Biomed," feeling hopeful, terrified, and overwhelmed?
Yet there I sit, beside two inspirational moms of recovered children, both
slightly older than Caroline. Now hopeful and confident, but with a head
still full of questions, starting with, "Weren't we supposed to be DONE by
now??!"
No really, weren't we??
It's been five years since her diagnosis. Diets and supplements and
treatments a plenty.... keeping the ones that worked, abandoning those
that didn't. Always moving forward. Always with hope for the next
breakthrough.
Recently, we found one in Neuroprotek LP (Low Phenol). A supplement
containing the flavenoids Luteolin, Quercetin and Rutin, designed to help
reduce symptoms of gut and brain inflammation and nerve damage.
Within a day, there was a decrease in OCD. Within a week, I ordered more.
She was calmer and happier. I was thankful to have another 'keeper' and
inspired to continue searching for things we haven't yet tried.
On the horizon
Accepting that yes, I was indeed the parent of a soon to be eight-year-
old, I regained focus on Dr. Rossignol. He outlined supplements and
treatments that most of us who've been at this a while have tried or ruled
out.
Omega's, Carnitine, Carnosine, Phosphytidylserine, Methyl b12, Taurine,
Cholesterol, 5-HTP, GABA, HBOT, IVIG etc...
But then, he broached the subject of next level supplements and
prescriptions. Supplements that many of us may categorically rule out
for younger children. Now, a piece of the puzzle potentially necessary for
older children and non-responders. Unlike omega's, not something you "try
and see" without substantial research. Pen in hand and open minded, I
jotted a list of the next-step treatments that seemed applicable.
- Galantamine
- Memantine (Namenda)
- Propranolol
- Pentoxifylline
- Pycnogenol
- Baclofen
Perhaps scarier than fish oil, but so many times in this life, to get what
means the most, we have to take the biggest risks. I was reminded of my
own words:
Life is too short for regrets. If we plan to recover our children, we need to
keep placing one foot in front of the other and forging a path toward the
best possible life.
Regarding Caroline
It's her birthday. It's summer. It's a magical time of year! If you follow
us on social media, you know her smiles are widest when she's swimming
at Grandma's, riding her bike, hitting the ski slopes, or with her nose in a
book!
We're not "done" yet, but life is good! With each passing year, it gets
easier. Things we never thought we'd see... ballet recitals, piano playing,
theater going, stress-free travel!! All possible because of biomedical
interventions.
GOleic (improved GcMAF) is the next supplement we'll be trying.
Immuno Biotech reports that it improves the metabolic activity of
microglial cells, neurons, mitochondria, and rebuilds the immune system.
"Reported improvements include:
- Attention and focus
- Learning and understanding
- Receptiveness and awareness of the environment and people
- Language and social skills (willingness to interact and communicate)
- Less hyperactive, less stereotypical, more cooperative and compliant
Children often respond in 5 weeks and an estimated 25% of children who
use it recover."
Sounds too good to be true! And it might be.... but yet, as a parent of a
child with autism, a child who just turned eight, what better birthday gift
is there than hope for recovery?
Because after all of the balloons and streamers and gluten free cake, at
the end of the day, all we want is our children to have the happiest
possible childhood.
It may look different than the one we envisioned when we saw the
positive pregnancy test. We may need to adapt our dreams. But come
what may, we must never stop dreaming.
Even for the "older" child, or one who hasn't responded how we had
hoped, there's always something else to try. Another key to unlock the
door.
Never, ever give up. I believe that would be Caroline's wish... and the
wish of every one of our children. Keep researching, keep taking the
necessary risks, and as the days turn into months, turn into years, always
keep fueling your stamina with hope!
Happy, Happy Birthday Sweet Caroline.
UPDATE: The results from our trials of some of the above supplements are
in:
Galantamine was HUGE! More on that below.
Namenda was not a good choice for her, it caused headaches and we
needed to stop.
Goleic initially seemed helpful, and we continued using it for a year, but
when we removed it, I noticed a decrease in ocd and tics and decided to
discontinue.
Pycnogenol can help modulate the immune system and is a supplement
she takes daily. I like that it claims to be a true modulator, not a booster
which can increase autoimmunity (as I suspect may have happened with
goleic).
Propranolol helped decrease anxiety and it seemed like a good fit…. until I
decided to see what it would look like if she didn’t take it. Much to my
surprise, without it she was more engaged and present, as if her mind was
clearer and I didn’t notice any increased anxiety.
The experience of finding that she improved as certain supplements were
removed reminded me that continual re-evaluation of supplement choices is
critical. Our kids are always growing and changing (too fast!) and it can be
easy to forget that our treatment choices must be fluid with their needs.
*Galantamine and Huperzine A*
These two supplements brought attention, focus, decreased OCD, more
language and are two things that have been major wow's for her. The
complete details can be found in our blog: 2 Amazing Supplements that
lifted my daughter's brain fog [Galantamine + Hup-A]
Advanced Treatments for Autism and Strategies for Non-
Responders
With the click of a button, Dr. Rossignol advances the overhead slide.
And there it is.
Lettering so bold, it's message couldn't possibly be lost on me.
"Treatment in OLDER Children"
My breath catches. The long days and short years have somehow piled
up. Wasn't it just yesterday I was the one taking copious notes at "Intro to
Biomed," feeling hopeful, terrified, and overwhelmed?
Yet there I sit, beside two inspirational moms of recovered children, both
slightly older than Caroline. Now hopeful and confident, but with a head
still full of questions, starting with, "Weren't we supposed to be DONE by
now??!"
No really, weren't we??
It's been five years since her diagnosis. Diets and supplements and
treatments a plenty.... keeping the ones that worked, abandoning those
that didn't. Always moving forward. Always with hope for the next
breakthrough.
Recently, we found one in Neuroprotek LP (Low Phenol). A supplement
containing the flavenoids Luteolin, Quercetin and Rutin, designed to help
reduce symptoms of gut and brain inflammation and nerve damage.
Within a day, there was a decrease in OCD. Within a week, I ordered more.
She was calmer and happier. I was thankful to have another 'keeper' and
inspired to continue searching for things we haven't yet tried.
On the horizon
Accepting that yes, I was indeed the parent of a soon to be eight-year-
old, I regained focus on Dr. Rossignol. He outlined supplements and
treatments that most of us who've been at this a while have tried or ruled
out.
Omega's, Carnitine, Carnosine, Phosphytidylserine, Methyl b12, Taurine,
Cholesterol, 5-HTP, GABA, HBOT, IVIG etc...
But then, he broached the subject of next level supplements and
prescriptions. Supplements that many of us may categorically rule out
for younger children. Now, a piece of the puzzle potentially necessary for
older children and non-responders. Unlike omega's, not something you "try
and see" without substantial research. Pen in hand and open minded, I
jotted a list of the next-step treatments that seemed applicable.
- Galantamine
- Memantine (Namenda)
- Propranolol
- Pentoxifylline
- Pycnogenol
- Baclofen
Perhaps scarier than fish oil, but so many times in this life, to get what
means the most, we have to take the biggest risks. I was reminded of my
own words:
Life is too short for regrets. If we plan to recover our children, we need to
keep placing one foot in front of the other and forging a path toward the
best possible life.
Regarding Caroline
It's her birthday. It's summer. It's a magical time of year! If you follow
us on social media, you know her smiles are widest when she's swimming
at Grandma's, riding her bike, hitting the ski slopes, or with her nose in a
book!
We're not "done" yet, but life is good! With each passing year, it gets
easier. Things we never thought we'd see... ballet recitals, piano playing,
theater going, stress-free travel!! All possible because of biomedical
interventions.
GOleic (improved GcMAF) is the next supplement we'll be trying.
Immuno Biotech reports that it improves the metabolic activity of
microglial cells, neurons, mitochondria, and rebuilds the immune system.
"Reported improvements include:
- Attention and focus
- Learning and understanding
- Receptiveness and awareness of the environment and people
- Language and social skills (willingness to interact and communicate)
- Less hyperactive, less stereotypical, more cooperative and compliant
Children often respond in 5 weeks and an estimated 25% of children who
use it recover."
Sounds too good to be true! And it might be.... but yet, as a parent of a
child with autism, a child who just turned eight, what better birthday gift
is there than hope for recovery?
Because after all of the balloons and streamers and gluten free cake, at
the end of the day, all we want is our children to have the happiest
possible childhood.
It may look different than the one we envisioned when we saw the
positive pregnancy test. We may need to adapt our dreams. But come
what may, we must never stop dreaming.
Even for the "older" child, or one who hasn't responded how we had
hoped, there's always something else to try. Another key to unlock the
door.
Never, ever give up. I believe that would be Caroline's wish... and the
wish of every one of our children. Keep researching, keep taking the
necessary risks, and as the days turn into months, turn into years, always
keep fueling your stamina with hope!
Happy, Happy Birthday Sweet Caroline.
UPDATE: The results from our trials of some of the above supplements are
in:
Galantamine was HUGE! More on that below.
Namenda was not a good choice for her, it caused headaches and we
needed to stop.
Goleic initially seemed helpful, and we continued using it for a year, but
when we removed it, I noticed a decrease in ocd and tics and decided to
discontinue.
Pycnogenol can help modulate the immune system and is a supplement
she takes daily. I like that it claims to be a true modulator, not a booster
which can increase autoimmunity (as I suspect may have happened with
goleic).
Propranolol helped decrease anxiety and it seemed like a good fit…. until I
decided to see what it would look like if she didn’t take it. Much to my
surprise, without it she was more engaged and present, as if her mind was
clearer and I didn’t notice any increased anxiety.
The experience of finding that she improved as certain supplements were
removed reminded me that continual re-evaluation of supplement choices is
critical. Our kids are always growing and changing (too fast!) and it can be
easy to forget that our treatment choices must be fluid with their needs.
*Galantamine and Huperzine A*
These two supplements brought attention, focus, decreased OCD, more
language and are two things that have been major wow's for her. The
complete details can be found in our blog: 2 Amazing Supplements that
lifted my daughter's brain fog [Galantamine + Hup-A]
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