An recently published study shows a potential link between the ProQuad vaccine and seizures. In brief, the article suggests that kids who got the ProQuad vaccine were twice as likely to develop febrile seizures.
Here's a link to a good review of the article.
Have a great week,
Kirk.
Thursday, February 28, 2008
Saturday, February 23, 2008
Parenting a Child With Epilepsy: Part 2
We are lucky to have a 2nd post by Kristi, who is the mother of a young boy with epilepsy. Here is "Part 2" of her post on parenting a child with epilepsy.
-------
We have entered a stage of holding with our son’s epilepsy, which we like to call behaviour management. He is mostly seizure- free, with only break through seizures that we have to worry about. They are predominantly myoclonic jerks, which means they are less dangerous than the drop seizures or tonic clonic seizures he has also experienced. That said, we are now in less of a crisis- management stage, and are trying to maximize his developmental potential during this pre- Kindergarten time.
We have self- referred to Occupational Therapist, Physical Therapist, Early Childhood Intervention play therapist, Speech and Language pathologist, etc. We had to self- refer because when we see our neurologist, he remarks that Sam is doing really well. And he is, compared to children having many seizures a day. However, the meds he is on are wreaking havoc with his personality, and with his ability to cope, to listen, to be still- all very important school skills. He is stiff and awkward, he has a hard time regulating his voice level, he struggles with eating neatly. He obsesses about different foods, different activities, and sometimes seems to get ‘stuck’ asking for the same thing many times in a few minutes, even if he has been told ‘no’ or ‘wait.’ This is exacerbated when he is hungry or tired. At home, we are able to cope with these things, though being a busy household, it is often a matter of juggling between my husband and I. Going out in public is another matter.
As with any child who has special needs, we need to really plan our life and activities around our sons’ ability to cope in those situations. His reaction depends on the time of day, and what kind of activity it is. He gets over- stimulated and overwhelmed easily. He melts down when he can’t get his own way. He yells, cries, runs. He is five, but behaves like he is two in his ability to cope, and so we manage, but amid stares of judgment. I often wish we could just stay home, or at least tattoo: “Our Son Has Special Needs” on our foreheads. We live in an increasingly understanding society, where children with special needs are almost integrated, yet in a small town, we stand out.
With all of this stigma and judgment comes hurt and anxiety, but mostly just a desire for our son to lead a normal, five year old life. To that end, we strive to enroll him in activities we otherwise include him in. It just takes more planning and preparation on our part as his parents to help him be successful. As an example, he loves music, so we signed him up for a Music for Young Children 10- week class. By week eight, he listened and participated for half of the class. So this is obviously a process. And while I felt like the other parents, and even some of the children were judging my son’s behaviour, he was oblivious. It was me who felt this hurt and exclusion.
As parents who have become almost experts at advocating for our child, we signed up for a very comprehensive assessment at a Kinsmen Children’s facility in Saskatoon. After waiting almost as year, and making phone calls, just to be sure we were still on the waiting list, we got in. And the whole time we were on the list, and then after we got our appointment card, in the time leading up to it, we worried. We worried because we know there are many children who need services just as badly, if not more than our son. We were concerned that our perception of his needs were just that of overwrought, exhausted parents who didn’t have a real clue where he should be at developmentally. We, as is common with parents of special needs kids, were worried that we were overreacting. As it turned out, he should be seeing his OT/PT twice as often as he is, doing a regular physical therapy routine daily at home and in a random sampling of five year olds, he would be in the bottom percentile for development, skill and ability. He was likened to a three- year old.
So we should not have doubted our ability to assess our own child. We should have ignored our neurologist’s five minute assessment and pushed harder to get our son’s needs assessed. We should have realized that there is a fine line between advocating and being pushy, and that generally, we are not pushy people. We should have known that we spend a disproportionate amount of our time meeting our son’s needs compared to our other children’s needs. We should have trusted our parental instincts and gut feelings. Parental a child with epilepsy can be full of “we should haves,” because there is no handbook. And with the amount of seizure disorder types, the lack of firm diagnosis in many cases, and the variety of anticonvulsants used there are even few resources that seem to apply.
Again, we need to look objectively at our son- how easy is that to do? As other parents of kids with epilepsy, you know it is difficult. He IS doing well compared to so many other ill children out there, with far more serious and life- threatening disorders and illness. And we want to raise the standard high, until he gives us reason to lower it. We want to reach for the stars with our son, just as we do with our daughters. And we do have hope. We have a great team who work with our son and with us, to maximize his potential. We have a support system of family and friends to rival no other, one that really does want to know how we are doing, what is current and how they can help. And my husband and I have each other. We seem to work better as a team when we are under stress. I often wonder if it would all fall apart if we had no ongoing stress, but with five kids, a farm and everything that goes with that, a lack of consistent stress anytime soon seems unlikely! The other thing we have, is our loving, boisterous, energetic son, who always has time for a hug and always wants to snuggle at bedtime. That is the best therapy of all.
-Kristi
-------
We have entered a stage of holding with our son’s epilepsy, which we like to call behaviour management. He is mostly seizure- free, with only break through seizures that we have to worry about. They are predominantly myoclonic jerks, which means they are less dangerous than the drop seizures or tonic clonic seizures he has also experienced. That said, we are now in less of a crisis- management stage, and are trying to maximize his developmental potential during this pre- Kindergarten time.
We have self- referred to Occupational Therapist, Physical Therapist, Early Childhood Intervention play therapist, Speech and Language pathologist, etc. We had to self- refer because when we see our neurologist, he remarks that Sam is doing really well. And he is, compared to children having many seizures a day. However, the meds he is on are wreaking havoc with his personality, and with his ability to cope, to listen, to be still- all very important school skills. He is stiff and awkward, he has a hard time regulating his voice level, he struggles with eating neatly. He obsesses about different foods, different activities, and sometimes seems to get ‘stuck’ asking for the same thing many times in a few minutes, even if he has been told ‘no’ or ‘wait.’ This is exacerbated when he is hungry or tired. At home, we are able to cope with these things, though being a busy household, it is often a matter of juggling between my husband and I. Going out in public is another matter.
As with any child who has special needs, we need to really plan our life and activities around our sons’ ability to cope in those situations. His reaction depends on the time of day, and what kind of activity it is. He gets over- stimulated and overwhelmed easily. He melts down when he can’t get his own way. He yells, cries, runs. He is five, but behaves like he is two in his ability to cope, and so we manage, but amid stares of judgment. I often wish we could just stay home, or at least tattoo: “Our Son Has Special Needs” on our foreheads. We live in an increasingly understanding society, where children with special needs are almost integrated, yet in a small town, we stand out.
With all of this stigma and judgment comes hurt and anxiety, but mostly just a desire for our son to lead a normal, five year old life. To that end, we strive to enroll him in activities we otherwise include him in. It just takes more planning and preparation on our part as his parents to help him be successful. As an example, he loves music, so we signed him up for a Music for Young Children 10- week class. By week eight, he listened and participated for half of the class. So this is obviously a process. And while I felt like the other parents, and even some of the children were judging my son’s behaviour, he was oblivious. It was me who felt this hurt and exclusion.
As parents who have become almost experts at advocating for our child, we signed up for a very comprehensive assessment at a Kinsmen Children’s facility in Saskatoon. After waiting almost as year, and making phone calls, just to be sure we were still on the waiting list, we got in. And the whole time we were on the list, and then after we got our appointment card, in the time leading up to it, we worried. We worried because we know there are many children who need services just as badly, if not more than our son. We were concerned that our perception of his needs were just that of overwrought, exhausted parents who didn’t have a real clue where he should be at developmentally. We, as is common with parents of special needs kids, were worried that we were overreacting. As it turned out, he should be seeing his OT/PT twice as often as he is, doing a regular physical therapy routine daily at home and in a random sampling of five year olds, he would be in the bottom percentile for development, skill and ability. He was likened to a three- year old.
So we should not have doubted our ability to assess our own child. We should have ignored our neurologist’s five minute assessment and pushed harder to get our son’s needs assessed. We should have realized that there is a fine line between advocating and being pushy, and that generally, we are not pushy people. We should have known that we spend a disproportionate amount of our time meeting our son’s needs compared to our other children’s needs. We should have trusted our parental instincts and gut feelings. Parental a child with epilepsy can be full of “we should haves,” because there is no handbook. And with the amount of seizure disorder types, the lack of firm diagnosis in many cases, and the variety of anticonvulsants used there are even few resources that seem to apply.
Again, we need to look objectively at our son- how easy is that to do? As other parents of kids with epilepsy, you know it is difficult. He IS doing well compared to so many other ill children out there, with far more serious and life- threatening disorders and illness. And we want to raise the standard high, until he gives us reason to lower it. We want to reach for the stars with our son, just as we do with our daughters. And we do have hope. We have a great team who work with our son and with us, to maximize his potential. We have a support system of family and friends to rival no other, one that really does want to know how we are doing, what is current and how they can help. And my husband and I have each other. We seem to work better as a team when we are under stress. I often wonder if it would all fall apart if we had no ongoing stress, but with five kids, a farm and everything that goes with that, a lack of consistent stress anytime soon seems unlikely! The other thing we have, is our loving, boisterous, energetic son, who always has time for a hug and always wants to snuggle at bedtime. That is the best therapy of all.
-Kristi
Tuesday, February 19, 2008
Good Article
Here's a link to a nice article that I thought you might enjoy. It's a good summary on epilepsy, current epilepsy research and what the future might hold.
You can find the article here.
Have a great day.
Kirk.
You can find the article here.
Have a great day.
Kirk.
Monday, February 18, 2008
The Gamma Knife
Gamma Knife for the Treatment of Epilepsy.
I recently attended the 62nd Annual meeting of the Eastern Association of Electroencephalographers. One of the very interesting talks was given on the use of the gamma knife for the treatment of seizures. "Gamma knife", sounds futuristic, right? Well, this technology was actually developed by Lars Leksell (Sweden) in 1967. The technology is pretty expensive and not many centers have a unit. Canada currently has 3 gamma knives country-wide and the USA has about 90.
What is the Gamma Knife?
The gamma knife does not actually involve a knife. In fact, it is a non-invasive form of surgery insofar as there is no cutting or removal of skull. It is a form of “radiosurgery”. Radiosurgery is basically the use of radioactivity to kill tissue.
The gamma knife contains 201 radioactive cobalt sources. Cobalt gives off gamma rays, and these rays are focused toward a common, intersecting point. This point is called the “active zone”, where a very small lesion is created by the radiation (see picture).
How is the Gamma Knife Used in Epilepsy?
The gamma knife is normally used to treat vascular malformations in the brain, or to "blast" small tumors. The rationale for using it in epilepsy is to destroy a small group of cells that are thought to be causing the seizure activity. This means that the use of the gamma knife surgery is limited to focal seizures.
Advantages
- Discharged same/next day (no hospitalization required)
- Non invasive (no craniotomy – ie, opening of the skull)
- Can access the deep structures of the brain that are hard to reach surgically (each of the 201 ray beams is not damaging alone, but the aggregate of them in a single focus is. Therefore, you can pass rays through the skull, but it's only where they intersect that a lesion can be created - allowing deep structures to be lesioned without opening the skull)
- Effective against lesions in eloquent cortex
Disadvantages
- Often takes 2-30 months before the effects become apparent (the gamma rays don't immediate destroy the tissue. Rather, they seem to set-into-motion a series of events that lead to the tissue's death)
- Only effective at making small lesions
- Doesn’t give you a specimen (tissue sample) to study and analyze for pathology
- Can cause transient edema (swelling)
Possible Complications
Nausea 2-10%,
Seizures 2-8%
Edema (swelling) 2-8%
Development of tumors from radiation (this has happened, but very very rarely - about 3/200,000)
Conclusions
Irradiating the brain seems a bit scary, but the beams are very focused to the active zone and aren't thought to cause any harm to other brain/body areas. Of course, the alternative to gamma knife surgery is open brain surgery, which has its own risks and tends to make people very uncomfortable. That said, brain surgery remains the gold-standard for the removal of an "epileptic focus". This use of the gamma knife in the treatment of epilepsy is not well established and is only an option for patients with focal seizures that stand to be improved by destroying a small brain region.
It is "Family Day" here in Ontario - it's a new provincial holiday.
Happy Family Day everyone.
Kirk.
Photo credit: www.karmanos.org
Saturday, February 9, 2008
Parenting a Child with Epilepsy: A Journey
Today we are lucky to have another guest post. Kristi and her husband are farmers in rural Saskatchewan and proud parents of five wonderful kids. Among her many accomplishments, Kristi instructs a taekwondo club and spends her spare time training for her 5th degree black belt.
Three years ago Kristi and her husband learned that their son has epilepsy. It has been a life-changing experience for them and their family. Here is the story of her journey so far.
Part 1.
Parenting a Child with Epilepsy: A Journey
A parent’s job, by definition, is to love, nurture, protect, care and advocate for their children. As a parent of a child with epilepsy, some of those duties become complicated and out of focus. Of course, we love our son. But now, we also love him with lots of time and energy spent on handling his seizure disorder. We love him with trips to the city for appointments: specialists, therapies, regular check-ups, tests; two hours each way, and of course fries on the way home. We love him with unexplained tight hugs, tears and time ... lots of time; Sometimes time to the exclusion of time with his sisters. We love him when he is crying as they jab him again for more blood work- we love him and we hold him down. We love him when he is overwhelmed, tired and unable to process, when he is freaking out yet again in a public place. We love our son in ways we never expected to have to love a child.
As for the care and advocacy part- it can become a full time job. We research, inquire and hound our sources of information time and again as something new pops up and we question again, whether the behaviour is within the realm of ‘normal’. I think, as a parent of a child with a seizure disorder, we spend an inordinate amount of time asking questions, many which can not be answered. The hard part of all of this is that no matter how much we love our son, how much we try to protect him and get the best care, treatment and therapies for him, we cannot change the outcome of this. Our son has an atypical seizure disorder. He can have a variety of seizures within a small amount of time, and there is no predictable pattern. He has been tested for the usual culprits- Lennox Gastaut being one of them, and after sending bits of muscle and tissue, cerebral spinal fluid, blood and bone all over North America, we have no more information than we had when we started; Just a son with less bone, muscle, tissue and an innate fear of hospitals. Along with the seizure disorder, our son has a condition called Chiari Malformation type II. So he has had brain/spinal surgery along with the epilepsy stuff. He had a skilled surgeon and a wonderful follow up MRI, but there will always be lurking doubts and concerns, fear that he could one day start to lose mobility.
The most disconcerting and disheartening fact of all of this, is that there are no absolutes. Our daughter has a bladder condition, one she will likely grow out of; one that can be seen on tests and measured and handled without pharmaceuticals that have devastating side effects. In effect, she has a plumbing issue- and one that is easy to treat. Our son has a computer problem- a bug, a virus, a cookie enabled somewhere in his brain. And no matter how many ways they look at it, they can give us very little more information than our first terrifying visit to the paediatric neurologist where we first heard the term ‘epilepsy’ with regards to our son. He was two. And while millions of dollars every year is spent on epilepsy research in North America alone, so far, they have only been able to churn out drugs that may or may not have any effect on seizures. And with the drugs comes a cost no one is really willing to address, because they work, sometimes. While this may all seem very demanding- the mother in me wants to demand that we Find Better Drugs! Especially with recent reports that a number of anticonvulsant drugs are linked to higher rates of suicide.
Ultimately, this is all a journey. One my husband and I, not to mention our son, who is five now, were not prepared for. One we find that allows us to get complacent for only very short amounts of time before we must get up, research, act and question once a again. Please join me on this journey and we can discuss together this anomaly called epilepsy and its effects on the life of the person with epilepsy, their family and caregivers.
-Kristi
Three years ago Kristi and her husband learned that their son has epilepsy. It has been a life-changing experience for them and their family. Here is the story of her journey so far.
Part 1.
Parenting a Child with Epilepsy: A Journey
A parent’s job, by definition, is to love, nurture, protect, care and advocate for their children. As a parent of a child with epilepsy, some of those duties become complicated and out of focus. Of course, we love our son. But now, we also love him with lots of time and energy spent on handling his seizure disorder. We love him with trips to the city for appointments: specialists, therapies, regular check-ups, tests; two hours each way, and of course fries on the way home. We love him with unexplained tight hugs, tears and time ... lots of time; Sometimes time to the exclusion of time with his sisters. We love him when he is crying as they jab him again for more blood work- we love him and we hold him down. We love him when he is overwhelmed, tired and unable to process, when he is freaking out yet again in a public place. We love our son in ways we never expected to have to love a child.
As for the care and advocacy part- it can become a full time job. We research, inquire and hound our sources of information time and again as something new pops up and we question again, whether the behaviour is within the realm of ‘normal’. I think, as a parent of a child with a seizure disorder, we spend an inordinate amount of time asking questions, many which can not be answered. The hard part of all of this is that no matter how much we love our son, how much we try to protect him and get the best care, treatment and therapies for him, we cannot change the outcome of this. Our son has an atypical seizure disorder. He can have a variety of seizures within a small amount of time, and there is no predictable pattern. He has been tested for the usual culprits- Lennox Gastaut being one of them, and after sending bits of muscle and tissue, cerebral spinal fluid, blood and bone all over North America, we have no more information than we had when we started; Just a son with less bone, muscle, tissue and an innate fear of hospitals. Along with the seizure disorder, our son has a condition called Chiari Malformation type II. So he has had brain/spinal surgery along with the epilepsy stuff. He had a skilled surgeon and a wonderful follow up MRI, but there will always be lurking doubts and concerns, fear that he could one day start to lose mobility.
The most disconcerting and disheartening fact of all of this, is that there are no absolutes. Our daughter has a bladder condition, one she will likely grow out of; one that can be seen on tests and measured and handled without pharmaceuticals that have devastating side effects. In effect, she has a plumbing issue- and one that is easy to treat. Our son has a computer problem- a bug, a virus, a cookie enabled somewhere in his brain. And no matter how many ways they look at it, they can give us very little more information than our first terrifying visit to the paediatric neurologist where we first heard the term ‘epilepsy’ with regards to our son. He was two. And while millions of dollars every year is spent on epilepsy research in North America alone, so far, they have only been able to churn out drugs that may or may not have any effect on seizures. And with the drugs comes a cost no one is really willing to address, because they work, sometimes. While this may all seem very demanding- the mother in me wants to demand that we Find Better Drugs! Especially with recent reports that a number of anticonvulsant drugs are linked to higher rates of suicide.
Ultimately, this is all a journey. One my husband and I, not to mention our son, who is five now, were not prepared for. One we find that allows us to get complacent for only very short amounts of time before we must get up, research, act and question once a again. Please join me on this journey and we can discuss together this anomaly called epilepsy and its effects on the life of the person with epilepsy, their family and caregivers.
-Kristi
Sunday, February 3, 2008
Anticonvulsants and Suicide
Suicide can be a taboo subject, but the purpose of this blog is to provide important information to those living with epilepsy. This means that "taboo" goes out the window.
Anticonvulsants May Increase the Risk of Suicide and Suicidal Thought
On Jan 31st, 2008 the FDA (Food and Drug Administration) announced that those taking the anticonvulsant medications are twice as likely to have suicidal behavior or thoughts of suicide (0.43%) than those taking placebo (an inert substance; 0.22%). This increase in suicidal thought and behavior seemed to be a general finding that was not specific to a particular age group, race, or gender group.
The drugs that were studied are
* Carbamazepine (marketed as Carbatrol, Equetro, Tegretol, Tegretol XR)
* Felbamate (marketed as Felbatol)
* Gabapentin (marketed as Neurontin)
* Lamotrigine (marketed as Lamictal)
* Levetiracetam (marketed as Keppra) [Patient Information Sheet]
* Oxcarbazepine (marketed as Trileptal)
* Pregabalin (marketed as Lyrica)
* Tiagabine (marketed as Gabitril)
* Topiramate (marketed as Topamax)
* Valproate (marketed as Depakote, Depakote ER, Depakene, Depacon)
* Zonisamide (marketed as Zonegran)
What Does This Mean for You?
The FDA states that: "those currently taking or starting on any antiepileptic drug should be closely monitored for notable changes in behavior that could indicate the emergence or worsening of suicidal thoughts or behavior or depression".
My thoughts are that the anticonvulsant drugs are essential for many individuals with epilepsy (or those taking these drugs for the treatment of bipolar disorder or neuropathic pain, etc.). All drugs have risks associated with them, and those risks must always be weighed with the potential benefits of the drug (e.g., seizure control). Whenever taking medication, always be mindful of the potential risks and always looking for changes in behavior.
The FDA recommends
- Do not make changes to your drug regime without talking to your doctor first
- Pay close attention to any changes in mood and behavior. These changes can happen quickly.
- Be mindful of the suicide warning signs. Some of these signs are:
---> talking about suicide or hurting yourself
---> withdrawing from your social group (friends, family, etc.)
---> talk of death and dying
---> giving away valued possessions
If you notice these changes in mood and behavior, please contact your doctor.
The FDA is asking that doctors begin letting their patients know about this finding. Make sure your doctor is letting his/her patients know!
The FDA alert can be found on this page.
Kirk.
Anticonvulsants May Increase the Risk of Suicide and Suicidal Thought
On Jan 31st, 2008 the FDA (Food and Drug Administration) announced that those taking the anticonvulsant medications are twice as likely to have suicidal behavior or thoughts of suicide (0.43%) than those taking placebo (an inert substance; 0.22%). This increase in suicidal thought and behavior seemed to be a general finding that was not specific to a particular age group, race, or gender group.
The drugs that were studied are
* Carbamazepine (marketed as Carbatrol, Equetro, Tegretol, Tegretol XR)
* Felbamate (marketed as Felbatol)
* Gabapentin (marketed as Neurontin)
* Lamotrigine (marketed as Lamictal)
* Levetiracetam (marketed as Keppra) [Patient Information Sheet]
* Oxcarbazepine (marketed as Trileptal)
* Pregabalin (marketed as Lyrica)
* Tiagabine (marketed as Gabitril)
* Topiramate (marketed as Topamax)
* Valproate (marketed as Depakote, Depakote ER, Depakene, Depacon)
* Zonisamide (marketed as Zonegran)
What Does This Mean for You?
The FDA states that: "those currently taking or starting on any antiepileptic drug should be closely monitored for notable changes in behavior that could indicate the emergence or worsening of suicidal thoughts or behavior or depression".
My thoughts are that the anticonvulsant drugs are essential for many individuals with epilepsy (or those taking these drugs for the treatment of bipolar disorder or neuropathic pain, etc.). All drugs have risks associated with them, and those risks must always be weighed with the potential benefits of the drug (e.g., seizure control). Whenever taking medication, always be mindful of the potential risks and always looking for changes in behavior.
The FDA recommends
- Do not make changes to your drug regime without talking to your doctor first
- Pay close attention to any changes in mood and behavior. These changes can happen quickly.
- Be mindful of the suicide warning signs. Some of these signs are:
---> talking about suicide or hurting yourself
---> withdrawing from your social group (friends, family, etc.)
---> talk of death and dying
---> giving away valued possessions
If you notice these changes in mood and behavior, please contact your doctor.
The FDA is asking that doctors begin letting their patients know about this finding. Make sure your doctor is letting his/her patients know!
The FDA alert can be found on this page.
Kirk.
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