Showing posts with label epilepsy. Show all posts
Showing posts with label epilepsy. Show all posts
Monday, March 23, 2009
Washington DC
I'm sorry I haven't written much this month. I don't know where this month went. I swear it was just the first of the month the other day. I have been invited to Washington DC. I am going this weekend representing Utah for the National Epilepsy Foundation walk. I am attending with my VP Margo. We are also speaking to our Senators and Representatives and speaking in front of the heads of the state foundations about the bill we passed last year. I am really honored that they have asked me to come and do this. Margo and I are planning all of our fun things we want to try and see between meetings. I have never been there before. Clarissa took me shopping on Saturday to help me get ready and to plan something to wear. I was really afraid of looking like a frumpy housewife when I walked in to meet some of these people. Not that isn't what I am I just don't want them to know it the second they see me. So wish me luck. I have six days in DC. My husband and kids are staying at home. I am hopeful that things will go really smooth while I am gone. Erik has taken half of the time I am gone off of work to be home with the kids. Although he is having a rough week working this many days in a row to get ready for me to leave. I don't know what I will do with myself to not be with them for that many days. Although I couldn't turn down this opportunity. I am really grateful to be doing this!
Friday, August 8, 2008
Chicago
I can't belive how much this trip has changed me. It was worth everything we had to do to get here.
Kimmie is doing okay. She is really frustrating today. Lara came in town last night! Mainly to help me and she took Kimmie to the Shedd Aquarium this morning. She got there and was only there 2 minutes before she told Lara she was too tired and needed to go back. She complained enough that Lara took her back. It cost $75 round trip with tickets and cab fare for her to see two minutes and take a nap.
I have learned so very much. The doctor that we ended up seeing was Dr. Catherine Chiron. She was amazing! She has given me advice on how to improve her eating habits! She also complimented me on the amount of things we have tried to help get her seizure free. She is about 60-70% sure with changing one med that we have with one med that we bring in from Canada may change the balance of things and make her "SEIZURE FREE!" I can't believe those words came out of her mouth. For a doctor to tell us there is any posibility that she could be seizure free would be huge. Apparently she is the world's expert in seizure medication combinations. She is just an answer to my prayers.
There is so much more information although I am suppose to be in class already so I am going to cut this short.
Thank you everyone for helping make this possible.
Kimmie is doing okay. She is really frustrating today. Lara came in town last night! Mainly to help me and she took Kimmie to the Shedd Aquarium this morning. She got there and was only there 2 minutes before she told Lara she was too tired and needed to go back. She complained enough that Lara took her back. It cost $75 round trip with tickets and cab fare for her to see two minutes and take a nap.
I have learned so very much. The doctor that we ended up seeing was Dr. Catherine Chiron. She was amazing! She has given me advice on how to improve her eating habits! She also complimented me on the amount of things we have tried to help get her seizure free. She is about 60-70% sure with changing one med that we have with one med that we bring in from Canada may change the balance of things and make her "SEIZURE FREE!" I can't believe those words came out of her mouth. For a doctor to tell us there is any posibility that she could be seizure free would be huge. Apparently she is the world's expert in seizure medication combinations. She is just an answer to my prayers.
There is so much more information although I am suppose to be in class already so I am going to cut this short.
Thank you everyone for helping make this possible.
Thursday, July 3, 2008
Epilepsy Thought
I know I have been posting a lot lately. I just was on the IDEA league web site and saw this thought. I love it... I may have to use it for my newsletter although I may not because it might offend. Let me know, I may put it on the next issue.
There are brain disorders worse than epilepsy... the worst is ignorance.
There are brain disorders worse than epilepsy... the worst is ignorance.
Thursday, May 15, 2008
Dravet Syndrome
Many people have asked what Dravet syndrome is, so the long story is...
Dravet Syndrome, also known as Severe Myoclonic Epilepsy of Infancy (SMEI), is a progressive childhood neurodevelopmental disorder characterized by severe epilepsy that does not respond well to treatment. Estimates of the prevalence of this rare disorder have ranged from 1:20,000 to 1:40,000 births, though incidence may be far greater as new genetic evidence is discovered. It occurs more frequently in boys than in girls, but knows no geographic or ethnic boundaries.
The course of Dravet Syndrome is highly variable from child to child. It begins in the first year of life. Development is normal prior to the onset of seizures. In most cases the first seizures are correlated with fever. These seizures are often prolonged. In time seizures increase in frequency and become more likely to occur without fever. Additional seizure types may appear.
During the second year of life, progressive regression of aquired skills and developmental delays are usually observed to varying degrees and additional neurological symptoms. Additional features that are seen in most children with Dravet Syndrome are poor regulation of body temperature and increased susceptibility to infection. For a significant number of these children secondary problems can also include sleep disturbance, slowed physical growth, movement disorders, and orthopedic disorders.
At this time, the treatments available for Dravet Syndrome are to improve symptoms, primarily anticonvulsant medications to control seizures. The seizures are very resistant to therapy and the response to different medicines can be highly variable from child to child. Certain medicines have been found to be the most useful for most individuals with Dravet Syndrome, a few others have been quite consistently found to have an aggravating effect.
Social Development: One way that many parents first become aware of delays in social development is when their children do not demonstrate the expected stranger anxiety or seperation anxiety that most typical children experience between the ages of one and three. Parents note that their children with Dravet syndrome lack a sense of appropriate social boundaries. They do not fear strangers and, in fact may be excessively affectionate toward strangers. Children with Dravet syndrome may have difficulty learning to imitate others’ behavior. Many tend toward solitary play and may engage in parallel play, but cooperative play is difficult and many do not understand turn-taking. Their ability to understand the concepts of ownership, belonging and others’ points of view may be difficult to assess, but based on parent reports, difficulties in these areas are common. Individuals with Dravet syndrome are likely to remain dependent on others for assistance with self-care skills such as toileting, dressing, and eating, often into adulthood.
Behavioral Development: Ninety-five percent of the parents report that their children had some unusual behaviors. Those most frequently reported were perservation or repetitive behaviors, flapping or clapping of hands, obsessions, excessive stubbornness, and excessive activity. Many parents also express concern for the safety of their children because of their tendency to wander.
This is taken off of the IDEA league web site.
It is one of the most severe epilepsy syndromes.
Dravet Syndrome, also known as Severe Myoclonic Epilepsy of Infancy (SMEI), is a progressive childhood neurodevelopmental disorder characterized by severe epilepsy that does not respond well to treatment. Estimates of the prevalence of this rare disorder have ranged from 1:20,000 to 1:40,000 births, though incidence may be far greater as new genetic evidence is discovered. It occurs more frequently in boys than in girls, but knows no geographic or ethnic boundaries.
The course of Dravet Syndrome is highly variable from child to child. It begins in the first year of life. Development is normal prior to the onset of seizures. In most cases the first seizures are correlated with fever. These seizures are often prolonged. In time seizures increase in frequency and become more likely to occur without fever. Additional seizure types may appear.
During the second year of life, progressive regression of aquired skills and developmental delays are usually observed to varying degrees and additional neurological symptoms. Additional features that are seen in most children with Dravet Syndrome are poor regulation of body temperature and increased susceptibility to infection. For a significant number of these children secondary problems can also include sleep disturbance, slowed physical growth, movement disorders, and orthopedic disorders.
At this time, the treatments available for Dravet Syndrome are to improve symptoms, primarily anticonvulsant medications to control seizures. The seizures are very resistant to therapy and the response to different medicines can be highly variable from child to child. Certain medicines have been found to be the most useful for most individuals with Dravet Syndrome, a few others have been quite consistently found to have an aggravating effect.
Social Development: One way that many parents first become aware of delays in social development is when their children do not demonstrate the expected stranger anxiety or seperation anxiety that most typical children experience between the ages of one and three. Parents note that their children with Dravet syndrome lack a sense of appropriate social boundaries. They do not fear strangers and, in fact may be excessively affectionate toward strangers. Children with Dravet syndrome may have difficulty learning to imitate others’ behavior. Many tend toward solitary play and may engage in parallel play, but cooperative play is difficult and many do not understand turn-taking. Their ability to understand the concepts of ownership, belonging and others’ points of view may be difficult to assess, but based on parent reports, difficulties in these areas are common. Individuals with Dravet syndrome are likely to remain dependent on others for assistance with self-care skills such as toileting, dressing, and eating, often into adulthood.
Behavioral Development: Ninety-five percent of the parents report that their children had some unusual behaviors. Those most frequently reported were perservation or repetitive behaviors, flapping or clapping of hands, obsessions, excessive stubbornness, and excessive activity. Many parents also express concern for the safety of their children because of their tendency to wander.
This is taken off of the IDEA league web site.
It is one of the most severe epilepsy syndromes.
Thursday, April 24, 2008
Legislation
With all the work that went into this legislation. I wanted to do a thank you dinner for those that helped out the most. So therefore we had an amazing dinner at Madeline's! This is a photo of all that attended!
Wednesday, April 9, 2008
Tommy Thompson Talk
My family said that I need to share all of this wonderful information with everyone. It will take me a while to write all of my notes down. The first of the totally amazing talks was Tommy Thompson (former Secretary of Health and Human Services, and former Governor of Wisconsin). He spoke about the Healthcare problems in America today he not only talked about what the problems are but what we can do about them. I was impressed that he didn't just get up there and tell us what was wrong he also gave solutions.
ECONOMIC PROBLEMS: (recessions) $2.4 trillion each year spent on healthcare 75% of that on chronic healthcare needs
HEALTHCARE WORKERS SHORTAGE: reimbursement for healthcare workers across all specialties and not specific specialties
MEDICARE: the current system will be broke in 2013
WELLNESS = PREVENTION we need to prevent major healthcare needs with annual check up that are paid for to prevent larger problems down the road
MANAGE MEDICATIONS: teach proper medication dosages to avoid duplications or serious side effects
INFORMATION TECHNOLOGY:
· Electronic Medical Records: You can put a ATM card in any machine in the world and get money we need to be able to put a medical id card in at any doctors or hospitals and get all of our history. This will prevent any mistakes from you past history not being filled in fully. This will also prevent unnecessary tests that you may already have the answer too. This would save us millions of dollars a year in unnecessary tests or easily preventable mistakes.
· E-prescribing: 50% of all prescription mistakes are made because of poor handwriting. Sending prescriptions electronically to the patients preferred pharmacy saves mistakes on both ends. This also saves time on the patients end from having to turn in the prescription and wait.
· Paperless Medicaid and Medicare forms: this would save $1.5 billion a year
· Physicals needed to get into Medicare: not preventing individuals from getting in but to establish a record of current treatments and be able to give care for preventable diseases for the individual in the future.
· Lifting restrictions for uninsurable patients to make insurable (will help them be able to get the needed preventative care they need)
FDA: more individuals needed to prove drugs that are currently in the system or possible Phase 4 in trials that put the medication to market in FDA trial phase to try it out for a period of time to ensure more patient safety
FOREIGN POLICY: many 3rd world countries are lacking in medical care. We need to require our interns to do a 4-6 weeks residency in those countries. They will get a better appreciation for the healthcare system here and be better doctors for their experiences.
PRESIDENTIAL POLITICS: get involved in all the campaigns. Ask healthcare questions. In 11 presidential debates this year only one healthcare question was asked start asking our leaders questions.
It isn’t the critic that counts it is the individual in the arena.
ECONOMIC PROBLEMS: (recessions) $2.4 trillion each year spent on healthcare 75% of that on chronic healthcare needs
HEALTHCARE WORKERS SHORTAGE: reimbursement for healthcare workers across all specialties and not specific specialties
MEDICARE: the current system will be broke in 2013
WELLNESS = PREVENTION we need to prevent major healthcare needs with annual check up that are paid for to prevent larger problems down the road
MANAGE MEDICATIONS: teach proper medication dosages to avoid duplications or serious side effects
INFORMATION TECHNOLOGY:
· Electronic Medical Records: You can put a ATM card in any machine in the world and get money we need to be able to put a medical id card in at any doctors or hospitals and get all of our history. This will prevent any mistakes from you past history not being filled in fully. This will also prevent unnecessary tests that you may already have the answer too. This would save us millions of dollars a year in unnecessary tests or easily preventable mistakes.
· E-prescribing: 50% of all prescription mistakes are made because of poor handwriting. Sending prescriptions electronically to the patients preferred pharmacy saves mistakes on both ends. This also saves time on the patients end from having to turn in the prescription and wait.
· Paperless Medicaid and Medicare forms: this would save $1.5 billion a year
· Physicals needed to get into Medicare: not preventing individuals from getting in but to establish a record of current treatments and be able to give care for preventable diseases for the individual in the future.
· Lifting restrictions for uninsurable patients to make insurable (will help them be able to get the needed preventative care they need)
FDA: more individuals needed to prove drugs that are currently in the system or possible Phase 4 in trials that put the medication to market in FDA trial phase to try it out for a period of time to ensure more patient safety
FOREIGN POLICY: many 3rd world countries are lacking in medical care. We need to require our interns to do a 4-6 weeks residency in those countries. They will get a better appreciation for the healthcare system here and be better doctors for their experiences.
PRESIDENTIAL POLITICS: get involved in all the campaigns. Ask healthcare questions. In 11 presidential debates this year only one healthcare question was asked start asking our leaders questions.
It isn’t the critic that counts it is the individual in the arena.
Wednesday, March 19, 2008
New Epilepsy Law
Signed yesterday! I wish I could have been there to see this signed although our bill was signed by the governor. It takes effect in 60 days! I am so thrilled that this is all done! We requested a public signing of the bill but apparently we didn't ask fast enough. But I am just glad that it is signed!
Thanks for everyone's support in this.
Thanks for everyone's support in this.
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