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SITEMAP
Alphabetical listing of
most pages on this site: Exceptions
will be state and county pages. Some are not linked from
this sidebar but from within a page
The CP Links Page is
where you will find most Federal, State and local County pages.
THE HOMEPAGE
WHAT IS CP
CEREBRAL PALSY
My attempt to
clarify CP you may find the information provided by NINDS is more
specific and detailed
TREATMENT of CP
There are many
different treatments and I only name those I am familiar with
Physical
Therapy
How it
is essential to maintain range of motion
Occupational Therapy
How it is
essential to maintain quality of life
Speech Therapy
What I know through my
experience By far not even close to what you
should know
Medication and Orthotics
Again what
I know through experience Much more
can be had searching the net or talking with doctors and therapists
CP LINKS
To Federal, State, County, City / Town and School District WebPages.
Health links and hopefully links to local disability sites and activity and events calendars
just drill down to the page you want
Cerebral Palsy Glossary
Terms
used when referring to items related to CP . Many of us may see these on a
doctors report and not know what it really means.
More Information of CP provided by NINDS
Perhaps a bit more concise and informed than my attempt to tell
of what CP is.
What Causes Cerebral Palsy?
What are the Risk Factors?
Can Cerebral Palsy Be Prevented?
What Are the Different Forms?
What Other Conditions Are Associated With Cerebral Palsy?
How Does a Doctor Diagnose Cerebral Palsy?
How is Cerebral Palsy Managed?
What Specific Treatments Are Available?
Drug Treatments
Surgery
Orthotic Devices
Assistive Technology
Alternative Therapies
Are There Treatments for Other Conditions Associated with Cerebral Palsy?
Do Adults with Cerebral Palsy Face Special Health Challenges?
What Research Is Being Done?
Where can I get more information?
Specific Neurological
Disorders
Many of these do not fall under the
heading of CP but are disabilities nonetheless. My take on the IEP,
IDEA 2004 (Public Law 94-142 & Public Law 101-476), and the 504 plan.
In 1990, changes to Public Law 94-142 arrived through
the Education of the Handicapped Act Amendments of 1990 (Public Law
101-476). Most apparent was the law’s name change – instead of the
Education of the Handicapped Act, it is now called the Individuals with
Disabilities Education Act. IDEA 2004
IEP overview
A Guide to the Individualized Education Program with sections
highlighted and comments by me
504 plan & IDEA Q&A
Protecting Students and others with Disabilities also a
list of accommodations and modifications as would relate to the school
environment. More on accommodations in the Parent and Educator Guide
Appendix E
Parent &
Educator Guide of 504 Plan concepts and real life accommodations.
Drafted by the OSPI and 5 Puget Sound area School Districts but would be a
valuable asset to any fighting for their child's 504 accommodations
anywhere U.S.A.
IDEA 2004 summary&
Title 1 IDEA as written
(Public Law 94-142 & Public Law 101-476)
A lot of legalese and unless you are a lawyer or are
looking for specific law probably will not be of much benefit.
You will better spend your time reading the Parent and Educator
Guide, the IEP overview and the 504 plan & IDEA Q&A
Washington State Chapter 392-172 WAC
SPED special education and the IEP
This is Washington State law as
regards the IEP and special education
Also a bit about our (current
Nov 08) personal
battle for Amber
MEMBER PAGES
Those who have joined with me to try to educate everyone of the
trials of having a child with CP or other disability and where
to find information
Pierce County Events
Local events for the disabled If you
know of any let me know I'll post them here
CONTACT US
DONATIONS/GIFTS
AMBER'S STORY
Amber's story from birth to I
started this website. Her continuing
story is in the Blog
AMBER'S PARENTS
A bit about us
and maybe you will get to know why we did what we did and continue to do
what we do by knowing a bit about us.
Blog of Amber and Family
The continuing story of
Amber and family updated as I have time.
SHARE YOUR STORY
This is different from
the Forums as the Forums are where you would post questions and answers.
In the share your story section people like you will post their
unique experiences and through what is said you may find you are not
alone. You may also find a friend and someone you can relate to. And
possibly a way to realize your own goals.
CP FAMILY LINKS
Websites created by people who have CP or someone in their family
has CP. Net-etiquette applies. All sites are subject to approval. Banners
and text allowed on these links.
NON CP RELATED
OTHER LINKS PAGES
Posted 1st come 1st served. We hope to have many of our friends
and supporters post their pages here. Net-etiquette applies.
All sites
are subject to approval. All Non-CP links are text only with a line or
two of information of the
link posted.
Please notify me of any broken links so I can
remove or fix them.
JOIN OUR NETWORK
Join with me in trying to educate the public of CP and other disabilities
WHY THIS SITE?
What motivated
me to build this site
CONTACT US
Direct your comments
to Robert.
Robert wrote a Science Fiction trilogy while being laid up. It took 4
years to complete and he has for sale Book 1 of the trilogy HERE
He is awaiting editing and copyrights on books 2 & 3 before
sending them to the publisher. Book 1 can stand alone and is a complete
novel of 237 pages and 135,000+ words in PDF format. Making Money Online (or not)
What I've tried and what I believe. The things to
watch out for. Many with disabilities have a very difficult
time working a 9 to 5 so working online is a viable alternative. However be wary
of those who will take your money and not deliver any worthwhile information.
Other sites I have or to be more precise
the wife has and I take care of. www.tamicraft.com www.vintageslips4u.com |
Page:
1, 2, 3, 4, 5, 6, 7
| June 6, 08 |
Tried to get a refill
on Amber's muscle relaxer and valium and the primary doc said no.
Apparently the neurologist said he didn't want her on those meds.
The thing is the meds he has prescribed do
not work. Even increasing the dosage is not having any effect. The
other meds were having an effect, albeit not total, it was helping
but now they will no longer give them to Amber. What are we to do.
Amber is in Pain and the meds they want her to take are not doing
anything and the meds that work they will no longer prescribe.
We are back to square one as far as I'm
concerned. At least as far as the meds go.
Amber is getting along with her psychiatrist
and that seems to be working out but so far Amber has not shown
any signs of a change of attitude. We have yet to get her the
antidepressant I think that appointment is next week and they have
yet to do the scan which I also think is next week. At any rate
Amber is back in the same place she was months ago and now I have
to decide whether to go over the doctors or let this game play
out.
The Artane is having no effect. The baclophen
is giving her headaches and we have stopped giving it to her as in
her words "I have enough to deal with, I don't need migraines
on top of it all. I can stop the headaches, so I don't want to
take the Baclophen anymore." We agree.
The pain med prescribed by the Seattle Dr. is
doing nothing.
Recently Amber witnessed an altercation in
school and was brought in as a witness. She was asked to testify
to what she saw. She apparently has a relationship or some form of
friendship or liking or something with both of those involved and
was really stressed about having to say anything about either.
This got her Dystonia going real bad and Tami went down to the
school to see what was up as Amber called her cousin about what
was going on and the cousin called Tami as she felt she should
know and Amber said it was OK, she just didn't want to talk with
mom directly. Turns out Amber was not in trouble but the stress
really got her Dystonia going. Tami had to take her out of school
anyway for a Psychiatrist appointment and so did so a bit early.
The psych. tried to get to the root of what was going on but was
unable to. Amber now feels that she not only has no friends but
will likely not be able to patch things up to the point of just
being able to get along, cause she was forced to testify. At any
rate Amber had a bad day on Wednesday the 4th. |
| June 12, 2008 |
Yesterday was a pretty
good day. Not that Amber was not in pain, cause she was, but her
visit to the psychiatrist that is dealing with Amber's depression
made some things happen that have given us some hope. First he
prescribed a new medication that is supposed to help with the
depression as well as the Dystonia ( IMIPRAMINE ). We will have to
give this some time to see if it will work or not, up to a month according
to the psychiatrist, but we are hopeful.
But what has really made a difference is that
this psychiatrist decided to allow Amber to continue taking
Vicoden as needed for pain and to also allow her to take Valium up
to 3 times per week when the Dystonia gets really bad. He cleared
this with the Neurologist who had originally nixed the Valium and
Vicoden. So now at least when she is in incredible pain and crying
we have a way to relieve her suffering. We are so grateful to the
psychiatrist to have gone to bat for Amber to at least in this
small way allow us a way to help Amber get through the really
tough times.
This is by no means a complete solution , not
even close, but it does allow us to help Amber overcome the real
bad times and as for the constant pain and Dystonia, well we can
only hope this new drug has some effect where all the others
haven't.
Another really great thing happened yesterday
as well. When Tami returned from the Dr's appointment and logged
onto her email she noticed that a very generous woman from Canada
donated $100.00 to us. She was brought to tears by the generosity
of this woman. No one has ever donated anything before and to
receive so much from one person was overwhelming. It will
certainly help us out and I intend to try to keep it in reserve
just incase we are able to get the e-stem Amber needs but have to
come up with some or all of the costs. I have said I will give 10%
of all website earnings to charity and we will do this at the end
of the year. We have decided for now that we will give to the Children's
Therapy unit at Good Samaritan Hospital so they can help other
children in need as they have helped Amber by loaning her an
e-stem unit till we can afford to purchase one or the insurance
caves and buys one. We are not holding our breath on that one.
Washington Basic Health through Molina is probably the worst
health insurance you can have and they generally do not pay for
any item they consider to be a lasting hardware item like the
e-stem, even with a prescription and deemed medically
necessary. Our therapists are going to bat for us but we
doubt they will succeed.
Still June 11th will go down as one of our
better days. Amber now has been taken off 3 meds ( the Artane the
Baclophen and that one that was prescribed by the Dr. at
Children's in Seattle. Maybe Tami can cancel the follow-up
appointment for him as well since she is no longer taking the med
he prescribed?) and placed on one. So now she takes Tegretol for
seizures and this new med Imipramine that is supposed to help with depression and
Dystonia. Vicodin as needed for pain and Valiun up to 3 times a
week if needed for severe Dystonia. She wears the e-stem daily.
With school to end tomorrow we are hoping that her stress level
will also come down and as a result so will her Dystonia. And to
top it off we are $100.00 closer to getting her an e-stem / TENS
unit combination of her own.
For those who are wondering what the
difference is in the E-stem vs. the TENS this is how it was
explained to me.
They work on different frequencies.
The E-stem is designed to work on blocking
nerve impulses to the brain that controls muscle movement. By
doing this it reduces the effect of the Dystonia and therefore the
amount of pain it causes.
The TENS unit works by blocking the nerves
from sending pain signals to the brain. So It will not stop
the contortions of the Dystonia only reduce the pain that Amber
feels as a result of the contortions.
The therapist says the e-stem is what is
necessary as we need to keep the Dystonia at bay. Reducing the
muscle cramping is preferred medically and by doing this it also
reduces pain. But they have a unit that can be switched from an
e-stem to a tens with the flip of a switch. This is what we would
like to get, as when the pain is too severe that the e-stem cannot
control it, Amber can switch it to the TENS setting and find some
pain relief until her meds kick in then she can switch it back to
an e-stem unit to control the Dystonia. At least that is the
objective. Whether it will work that way is unknown until we
actually get one and give it a try.
On another note Amber got her braces off on
the 10th and can now eat anything she wants. Her first was some
chewing gum then ice cream with NUTS and last night popcorn. She
is really enjoying being able to eat some foods she couldn't with
braces. I now have to try and save enough to get braces for my son
by next year or the year after at the latest.
As for the rest of the family. Well our son
is doing fine except for a sore throat. Tami is doing OK and is
off today taking her mother for an eye surgery appointment for
cataracts and I need to get more walking in. I am finding it hard
to get away from the walker or crutches. I need to push myself a
bit harder to get this broken leg to heal properly. Also I need to
get better at what I eat as my blood sugar levels are all over the
place. I am diabetic. |
Go to page 4 of Amber's Blog
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If you have a site that deals with any disabilities
then consider either joining CPFSN.org (it
is totally free) and having a link to your site on the appropriate page
(e.g. State, County) as well as the ‘Members’ page or doing a simple
link exchange and having your site appear on the ‘CP Family’ links
page, if you or your child has CP or any disability.
If you do not have CP or a child with CP or have a
site devoted to any disability you can still have a reciprocating link
placed on the Non-CP related links page. A link exchange would not only
show your support of this site but would increase your ranking with search
through having another outside link (SEO).
Use the ‘Contact Us’ page and email Robert if you
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2007
-2008