SolarSon
Well-Known Member
Looking to find any other parents out there that have treated their child with phenobarbital for absence seizures, or any other medication and then tried to switch to CBD.
A bit of back story,
Earlier this year we noticed our son was having very weird staring spells. These would last anywhere from 6 seconds to upwards of 30 and 40. These were different then his "I am too busy to pay attention" stairs. His pupils dilate, and he is motionless. You can snap your fingers around his head, call his name and even touch him without response. When he finally "comes to" he often seems scared or has a confused look on his face.
We had first mentioned this to our GP as soon as we noticed this happening. He advised us this could just be toddler behavior and to monitor it. So we did, and went back two weeks later with data recorded to show him of the dates and lengths of episodes and what he was doing at the time. We got a referral to a neurologist.
First appointment we met, discussed what was happening and they did some checks of his vitals and I think they drew blood for testing. We were sent for a EEG, they prescribed and provided a melotonin strip and advised us of instructions to go to the appointment.
Went to the appointment took him forever to get sleepy but we finally got it done!
Next appointment we are advised that there is no concrete activity shown on the EEG, (Or ECG I am forgetful with medical terms, the one that measures brain activity) They advised that they would require a 3 day hospital stay to run the same test consistent but the doctor stated that with our son and his age this was probably near impossible. So he stated we should medicate, and if the seizures stop then we know what is happening.
Fast forward, to the follow up appointment this past summer (after we have been treating our son with phenobarbital (45mg at bedtime and 7.5 mg in the morning) We have noticed that a child who was once developing to show extreme intelligence is now slowing down, his speech he trys so hard to speak but it is not coming out correct and we can see his frustrations. He displays extreme symptoms of ADHD (a side effect of this medication), as well as goes through ups and downs with his moods (another side effect)
At the first appointment that we were advised to medicate, we mentioned CBD and our wishes to explore that path of treatment and we were looked at like we had 9 heads. We were at the time worried to push this, as he was the professional, not us. We did not want to come under fire with people accusing us of wanting to "drug our child".
Now that we tried their way and I have been noticing all these negatives over the last few months we want him off this medication.
I would like to use CBD to assist with the side effect symptoms he currently has and to aid in the weening and withdrawal YES withdrawal from this chemical they put my son on. Then at that point, I want to ween off of the CBD/THC (as i know you need minimal THC to make the CBD more effective, but hey our children can handle higher dose then adults of CBD anyway due to the recent activity from mothers breast milk and the endo canaboid system)
Absence Seizures are usually 90% outgrown with age.
The interesting thing, and I hate myself for just blindly trusting the neurologist on this one, phenobarbital is not even used to treat absence seizures but instead it can induce them. Now m y sons seizure activity ceased while on this medication with the exception of 2x when he had missed his medication due to falling asleep early and us letting him sleep through the night. That leads me to believe there is something but not absence seizures.
My main question, who here has had issues even getting a referral for your child to a cannabis clinic?
First i was told he just flat out wouldn't send the referral. Then when I stated it was our right for our son to go to a specialist she comes back with, well there are no cannabis specialists its too new...... I stated well then a medical professional who is exploring the use of CBD/THC for medicinal purposes either way he can not deny the referral to a specialist for a 2nd opinion.
I know how to do a self referral for him, but that is going to make it a long hard battle due to his age. Who else has had this battle, any input? what happened, did you succeed in legally treating with CBD/THC or?
Thank you to any who respond, this is a frustrating situation at least and just looking to rant/brainstorm and speak with others in our situation. We have not stopped and are pushing forward with the cannabis clinic. But at the same time awaiting a follow up with the neurologist regarding getting my son off this medication.
A bit of back story,
Earlier this year we noticed our son was having very weird staring spells. These would last anywhere from 6 seconds to upwards of 30 and 40. These were different then his "I am too busy to pay attention" stairs. His pupils dilate, and he is motionless. You can snap your fingers around his head, call his name and even touch him without response. When he finally "comes to" he often seems scared or has a confused look on his face.
We had first mentioned this to our GP as soon as we noticed this happening. He advised us this could just be toddler behavior and to monitor it. So we did, and went back two weeks later with data recorded to show him of the dates and lengths of episodes and what he was doing at the time. We got a referral to a neurologist.
First appointment we met, discussed what was happening and they did some checks of his vitals and I think they drew blood for testing. We were sent for a EEG, they prescribed and provided a melotonin strip and advised us of instructions to go to the appointment.
Went to the appointment took him forever to get sleepy but we finally got it done!
Next appointment we are advised that there is no concrete activity shown on the EEG, (Or ECG I am forgetful with medical terms, the one that measures brain activity) They advised that they would require a 3 day hospital stay to run the same test consistent but the doctor stated that with our son and his age this was probably near impossible. So he stated we should medicate, and if the seizures stop then we know what is happening.
Fast forward, to the follow up appointment this past summer (after we have been treating our son with phenobarbital (45mg at bedtime and 7.5 mg in the morning) We have noticed that a child who was once developing to show extreme intelligence is now slowing down, his speech he trys so hard to speak but it is not coming out correct and we can see his frustrations. He displays extreme symptoms of ADHD (a side effect of this medication), as well as goes through ups and downs with his moods (another side effect)
At the first appointment that we were advised to medicate, we mentioned CBD and our wishes to explore that path of treatment and we were looked at like we had 9 heads. We were at the time worried to push this, as he was the professional, not us. We did not want to come under fire with people accusing us of wanting to "drug our child".
Now that we tried their way and I have been noticing all these negatives over the last few months we want him off this medication.
I would like to use CBD to assist with the side effect symptoms he currently has and to aid in the weening and withdrawal YES withdrawal from this chemical they put my son on. Then at that point, I want to ween off of the CBD/THC (as i know you need minimal THC to make the CBD more effective, but hey our children can handle higher dose then adults of CBD anyway due to the recent activity from mothers breast milk and the endo canaboid system)
Absence Seizures are usually 90% outgrown with age.
The interesting thing, and I hate myself for just blindly trusting the neurologist on this one, phenobarbital is not even used to treat absence seizures but instead it can induce them. Now m y sons seizure activity ceased while on this medication with the exception of 2x when he had missed his medication due to falling asleep early and us letting him sleep through the night. That leads me to believe there is something but not absence seizures.
My main question, who here has had issues even getting a referral for your child to a cannabis clinic?
First i was told he just flat out wouldn't send the referral. Then when I stated it was our right for our son to go to a specialist she comes back with, well there are no cannabis specialists its too new...... I stated well then a medical professional who is exploring the use of CBD/THC for medicinal purposes either way he can not deny the referral to a specialist for a 2nd opinion.
I know how to do a self referral for him, but that is going to make it a long hard battle due to his age. Who else has had this battle, any input? what happened, did you succeed in legally treating with CBD/THC or?
Thank you to any who respond, this is a frustrating situation at least and just looking to rant/brainstorm and speak with others in our situation. We have not stopped and are pushing forward with the cannabis clinic. But at the same time awaiting a follow up with the neurologist regarding getting my son off this medication.
Thank you for starting the thread, and may it catch the eye of other parents living with the same concerns. 
