Dravet Syndrome

[emtannie]

Very good friends of mine have a 16 month old daughter who has been having serious seizures since the age of 7 months. Sometimes her seizures last 1 1/2 to 2 hours, despite medical interventions. Valium, ativan, phenobarb, versed, and numerous other medications have been used to try to control her seizures, with limited success.

I have attended at least 7 calls where we have transported this little one to hospital while she has been having generalized status epilepticus. It is scary to not be able to bring her seizures under control sometimes, and this little one hits close to home, because I am good friends with her parents.

After a multitude of MRI's, CT's, EEG's, spinal taps, and blood tests, all of which came back with no reason for the seizures, blood samples were sent to the Mayo Clinic, where genetics testing was completed, and the diagnosis of Dravet Syndrome was given to the parents. This is a very rare disorder, and they were given the following website for more information: www.idealeague.org

They have also spent significant time looking at other websites, and trying to learn as much as possible about this disorder.

This little one was fortunate to have a run of 128 days seizure free, and two days ago, she again had a major seizure episode. One of the frustrations of her parents is that all the websites have lots of stories about children who have lots of seizures, but no information on children who have remission periods; the doctor they are currently dealing with has not been very open with information either. None of the contributors to the websites seem very willing to talk about "good days" or small successes.

All they are looking for is some positive information, an experience of another parent who has had a child with periods of no seizures. What they see on the websites is just the worst case scenarios, which is incredibly depressing. They are fully aware that the road is going to be mostly uphill with this child, and the outlook is not good, and they are prepared for that. They are not blind to the long term outlook. They just want to find other parents who have had small successes like them, where their child has had a seizure-free period. In their eyes, every day without a seizure is a good day, and should be celebrated, and they want to find other parents in the same situation.

So, after my long-winded introduction, I am asking - is there anyone in the city who is familiar with this rare disorder? Do you know of any groups or organizations in your area that support families with a Dravet child? It would be nice for them to have contact with other parents who are seeing some successes, no matter how small, so they can celebrate the good days, no matter how few they may be.

Thanks for any information you can provide.

[Jwade]

Very good friends of mine have a 16 month old daughter who has been having serious seizures since the age of 7 months. Sometimes her seizures last 1 1/2 to 2 hours, despite medical interventions. Valium, ativan, phenobarb, versed, and numerous other medications have been used to try to control her seizures, with limited success.

I have attended at least 7 calls where we have transported this little one to hospital while she has been having generalized status epilepticus. It is scary to not be able to bring her seizures under control sometimes, and this little one hits close to home, because I am good friends with her parents.

After a multitude of MRI's, CT's, EEG's, spinal taps, and blood tests, all of which came back with no reason for the seizures, blood samples were sent to the Mayo Clinic, where genetics testing was completed, and the diagnosis of Dravet Syndrome was given to the parents. This is a very rare disorder, and they were given the following website for more information: www.idealeague.org

They have also spent significant time looking at other websites, and trying to learn as much as possible about this disorder.

This little one was fortunate to have a run of 128 days seizure free, and two days ago, she again had a major seizure episode. One of the frustrations of her parents is that all the websites have lots of stories about children who have lots of seizures, but no information on children who have remission periods; the doctor they are currently dealing with has not been very open with information either. None of the contributors to the websites seem very willing to talk about "good days" or small successes.

All they are looking for is some positive information, an experience of another parent who has had a child with periods of no seizures. What they see on the websites is just the worst case scenarios, which is incredibly depressing. They are fully aware that the road is going to be mostly uphill with this child, and the outlook is not good, and they are prepared for that. They are not blind to the long term outlook. They just want to find other parents who have had small successes like them, where their child has had a seizure-free period. In their eyes, every day without a seizure is a good day, and should be celebrated, and they want to find other parents in the same situation.

So, after my long-winded introduction, I am asking - is there anyone in the city who is familiar with this rare disorder? Do you know of any groups or organizations in your area that support families with a Dravet child? It would be nice for them to have contact with other parents who are seeing some successes, no matter how small, so they can celebrate the good days, no matter how few they may be.

Thanks for any information you can provide.

Try this site!

[fireflymedic]

Might try the epilepsy foundation in canada - they deal with it from all aspects from trauma, to birth issues, etc. I imagine they should be helpful as well ! Good link there JWade !

[Happiness]

here is another site with stories

http://www.idea-league.org/our-stories