On November 12, 2015, Tanner received his first dose of epidiolex, CBD oil. 3 weeks later we have seen a mild decrease in seizure activity but nothing to really speak about. Before the oil, he would have anywhere from 250-450 seizures a day in the form of clusters of Myoclonic jerks or Infantile spasms. We are still not clear exactly which ones. He would have an occassional tonic clonic, where his body shakes or his eyes dart back and forth very quickly and an occassional clonic, where only 1 side of his body shakes. Today, he is still having all of those, but seizures have decreased to 150-250 jerks a day. No decrease in the others. These are the "possibilities" we heard about before starting the trial, from other parents of CDKL5 children:
we could see improvements immediately
some kids get worse before better
it could take 30 days or longer to see results
we could see positive results in personality, but maybe not seizures
CBD oil works best on it's own, without other anti-seizure meds, and in small doses.
We will not be able to begin weaning Tanner off pharmaceutical meds for 90 days, so we are prepared for the chance that we may not see improvements for quite some time still. There is also the possibililty that Epidiolex will not work for him. If that is the case, there are other CBD oils out there with THC in them, which we have heard positive things about and our doctor said he would help us on our journey, even though we will be responsible for ordering and administering that oil all on our own.
The purpose of creating this blog site is so I can update our many many friends and family, on a daily or weekly basis. Also, as a way to communicate and educate about what life is for us, for Tanner and for about 1200 other children living with CDKL5, in the world. I have learned a LOT about being a special needs parent, in a very short amount of time and as I watch my son grow, I realize how hard it is sometimes to know what to say to us and how to support us. You may not get to know Tanner as well as some other kids because he won't communicate using words and he won't run around reaching for toys that are of interest to him. But I hope to be able to teach you, thru this blog, about who Tanner is. His likes and dislikes, abilities and inabilities and how you can help.
we could see improvements immediately
some kids get worse before better
it could take 30 days or longer to see results
we could see positive results in personality, but maybe not seizures
CBD oil works best on it's own, without other anti-seizure meds, and in small doses.
We will not be able to begin weaning Tanner off pharmaceutical meds for 90 days, so we are prepared for the chance that we may not see improvements for quite some time still. There is also the possibililty that Epidiolex will not work for him. If that is the case, there are other CBD oils out there with THC in them, which we have heard positive things about and our doctor said he would help us on our journey, even though we will be responsible for ordering and administering that oil all on our own.
The purpose of creating this blog site is so I can update our many many friends and family, on a daily or weekly basis. Also, as a way to communicate and educate about what life is for us, for Tanner and for about 1200 other children living with CDKL5, in the world. I have learned a LOT about being a special needs parent, in a very short amount of time and as I watch my son grow, I realize how hard it is sometimes to know what to say to us and how to support us. You may not get to know Tanner as well as some other kids because he won't communicate using words and he won't run around reaching for toys that are of interest to him. But I hope to be able to teach you, thru this blog, about who Tanner is. His likes and dislikes, abilities and inabilities and how you can help.
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