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Hi everyone! I have a 5 year old girl who has been on Keppra and Depakote for about a year for her Absence seizures. It was all such a shock to me when she was first diagnosed that I just agreed to all treatment. After I started doing more research on her meds, and seeing her change after being on the meds, I started to not like the medication she is on. I am considering starting her on CBD oil, and when I told her neurologist, they said they will help wean her off the medication, but then my daughter will no longer be their patient since she will not be on any medication. Not sure what to do from this point. Trying to find a doctor that will help treat her seizures with CBD oil, but don't know where to start. We live in the Northwest suburbs of Chicago, if anyone has any tips...PLEASE help me out. Thanks.

Comments

It has helped many people.

Submitted by just_joe on Sun, 2018-07-08 - 18:06

It has helped many people. But it hasn't helped all people. It can be used in some states that have approved it for use in the medical field. So if you want to use it only then you will need to find a doctor who is open to treatments other then medications. Now you also said you wanted the neurologist to treat her seizures. The first thing in treating epilepsy is MEDICATIONS. Yes your research showed that there are side effects to medications for epilepsy. But then ANY AND ALL MEDICATIONS have their side effects. Generally it takes 3-4 weeks for her body to get used to the medication while the therapeutic levels build in her body. Before you take her off medications you need to research and find out what other type of seizures she could have. That may sound weird but absence or petite mal seizures are not the only type of seizures a person can have.I had weird feelings in my right hand. My teachers thought I was daydreaming in class. Both of those were seizures. Yes absence and focal seizures. But my teachers my family and I didn't know they were seizures. Instead of a few a month they became a few a week. Then a few a day. Then I had a Grand Mal seizure (generalized tonic clonic). The doc started me on medications. Dilantin and phenobarbital. Instead of a few a day they went to a few a week then a few a month. I didn't have any more grand mal seizures. I did have focal seizures which today would be focal seizure. any of the partial seizures and they can generalize and become convulsive seizures. In 1969-70 I went months without any seizures. I was tired of taking pills and since I hadn't had any seizures I stopped taking them. I was doing great and had stopped at Moms on my way home from college. The next thing I knew was that I had gone into status epilepticus (one seizure after another). I was having 40 grand mal seizures an hour. They started at about 10pm. There was no 911 back then. It was 530 am before they could get a vehicle that I would not hit the driver in. YUP a station wagon and I was in the very back. The neurologists worked on me and I was starting to stop the seizures. Mom had to take the cr home and came right back. In the 15 minutes she was gone I went into status again. I cam out of a coma 3 days later. The neurologist was the head doctor in th hospital and he and 4 others came in. I was informed that afternoon that they had done all hey could and that if I split a hair a thousand times that's how close to seeing Gods face I was. I spent the next 3-4 weeks in the hospital while the medications got to their therapeutic levels. So ask what can happen if she is taken off the medications. What I put in here was ME and what happened to me. But my seizures started slowly and they increased in numbers before they generalized. Her neurologist can help and yes even lower her dosages and at the same time can work at using CBD. My epileptologist and I had talked about it and yes he would have prescribed it. We tried coupled my Keppra with vimpat and that worked. It reduced my seizures to a seizure every 8-14 days and at times weeks. It also shortened the time in those seizures. I an have a seizure today and the people around me would know nothing about th seizure unless I told them I had itYes seizures are not great. Your helping her and what you did was started. But if you want her treated then discuss other medications that an be used. There are only 60+ different medications that were created to control seizures. Your daughter has only been on 2. If you take medications for anything research that medication and you will see that it to has side effects.Seizure medications are to stop electrical impulses from hitting wrong in the brain. Those wrong hits can cause a chain reaction which would be the seizure itself. MJ and CBD calm down the central nervous system which slows down those hits. The THC in cbd is taken out if some of it. But is in others and the neurologists would know which CBD she would do better on.

It has helped many people. But it hasn't helped all people. It can be used in some states that have approved it for use in the medical field. So if you want to use it only then you will need to find a doctor who is open to treatments other then medications. Now you also said you wanted the neurologist to treat her seizures. The first thing in treating epilepsy is MEDICATIONS. Yes your research showed that there are side effects to medications for epilepsy. But then ANY AND ALL MEDICATIONS have their side effects. Generally it takes 3-4 weeks for her body to get used to the medication while the therapeutic levels build in her body. Before you take her off medications you need to research and find out what other type of seizures she could have. That may sound weird but absence or petite mal seizures are not the only type of seizures a person can have.I had weird feelings in my right hand. My teachers thought I was daydreaming in class. Both of those were seizures. Yes absence and focal seizures. But my teachers my family and I didn't know they were seizures. Instead of a few a month they became a few a week. Then a few a day. Then I had a Grand Mal seizure (generalized tonic clonic). The doc started me on medications. Dilantin and phenobarbital. Instead of a few a day they went to a few a week then a few a month. I didn't have any more grand mal seizures. I did have focal seizures which today would be focal seizure. any of the partial seizures and they can generalize and become convulsive seizures.  In 1969-70 I went months without any seizures. I was tired of taking pills and since I hadn't had any seizures I stopped taking them. I was doing great and had stopped at Moms on my way home from college. The next thing I knew was that I had gone into status epilepticus (one seizure after another). I was having 40 grand mal seizures an hour. They started at about 10pm. There was no 911 back then. It was 530 am before they could get a vehicle that I would not hit the driver in. YUP a station wagon and I was in the very back. The neurologists worked on me and I was starting to stop the seizures. Mom had to take the cr home and came right back. In the 15 minutes she was gone I went into status again. I cam out of a coma 3 days later. The neurologist was the head doctor in th hospital and he and 4 others came in. I was informed that afternoon that they had done all hey could and that if I split a hair a thousand times that's how close to seeing Gods face I was. I spent the next 3-4 weeks in the hospital while the medications got to their therapeutic levels. So ask what can happen if she is taken off the medications. What I put in here was ME and what happened to me. But my seizures started slowly and they increased in numbers before they generalized. Her neurologist can help and yes even lower her dosages and at the same time can work at using CBD. My epileptologist and I had talked about it and yes he would have prescribed it. We tried coupled my Keppra with vimpat and that worked. It reduced my seizures to a seizure every 8-14 days and at times weeks. It also shortened the time in those seizures. I an have a seizure today and the people around me would know nothing about th seizure unless I told them I had itYes seizures are not great. Your helping her and what you did was started. But if you want her treated then discuss other medications that an be used. There are only 60+ different medications that were created to control seizures. Your daughter has only been on 2. If you take medications for anything research that medication and you will see that it to has side effects.Seizure medications are to stop electrical impulses from hitting wrong in the brain. Those wrong hits can cause a chain reaction which would be the seizure itself. MJ and CBD calm down the central nervous system which slows down those hits. The THC in cbd is taken out if some of it.  But is in others and the neurologists would know which CBD she would do better on.

It has helped many people. But it hasn't helped all people. It can be used in some states that have approved it for use in the medical field. So if you want to use it only then you will need to find a doctor who is open to treatments other then medications. Now you also said you wanted the neurologist to treat her seizures. The first thing in treating epilepsy is MEDICATIONS. Yes your research showed that there are side effects to medications for epilepsy. But then ANY AND ALL MEDICATIONS have their side effects. Generally it takes 3-4 weeks for her body to get used to the medication while the therapeutic levels build in her body. Before you take her off medications you need to research and find out what other type of seizures she could have. That may sound weird but absence or petite mal seizures are not the only type of seizures a person can have.I had weird feelings in my right hand. My teachers thought I was daydreaming in class. Both of those were seizures. Yes absence and focal seizures. But my teachers my family and I didn't know they were seizures. Instead of a few a month they became a few a week. Then a few a day. Then I had a Grand Mal seizure (generalized tonic clonic). The doc started me on medications. Dilantin and phenobarbital. Instead of a few a day they went to a few a week then a few a month. I didn't have any more grand mal seizures. I did have focal seizures which today would be focal seizure. any of the partial seizures and they can generalize and become convulsive seizures. In 1969-70 I went months without any seizures. I was tired of taking pills and since I hadn't had any seizures I stopped taking them. I was doing great and had stopped at Moms on my way home from college. The next thing I knew was that I had gone into status epilepticus (one seizure after another). I was having 40 grand mal seizures an hour. They started at about 10pm. There was no 911 back then. It was 530 am before they could get a vehicle that I would not hit the driver in. YUP a station wagon and I was in the very back. The neurologists worked on me and I was starting to stop the seizures. Mom had to take the cr home and came right back. In the 15 minutes she was gone I went into status again. I cam out of a coma 3 days later. The neurologist was the head doctor in th hospital and he and 4 others came in. I was informed that afternoon that they had done all hey could and that if I split a hair a thousand times that's how close to seeing Gods face I was. I spent the next 3-4 weeks in the hospital while the medications got to their therapeutic levels. So ask what can happen if she is taken off the medications. What I put in here was ME and what happened to me. But my seizures started slowly and they increased in numbers before they generalized. Her neurologist can help and yes even lower her dosages and at the same time can work at using CBD. My epileptologist and I had talked about it and yes he would have prescribed it. We tried coupled my Keppra with vimpat and that worked. It reduced my seizures to a seizure every 8-14 days and at times weeks. It also shortened the time in those seizures. I an have a seizure today and the people around me would know nothing about th seizure unless I told them I had itYes seizures are not great. Your helping her and what you did was started. But if you want her treated then discuss other medications that an be used. There are only 60+ different medications that were created to control seizures. Your daughter has only been on 2. If you take medications for anything research that medication and you will see that it to has side effects.Seizure medications are to stop electrical impulses from hitting wrong in the brain. Those wrong hits can cause a chain reaction which would be the seizure itself. MJ and CBD calm down the central nervous system which slows down those hits. The THC in cbd is taken out if some of it. But is in others and the neurologists would know which CBD she would do better on.

The FDA has just approved a

Submitted by zacksdad on Wed, 2018-07-11 - 19:19

The FDA has just approved a new medication based on refined CBD oil (GW Pharmaceuticals-Epidoliox (not sure of the spelling)). No special certification will be required to prescribe it (I think). In states where it is legal to purchase CBD oil from an approved shop, you'll have to trust the people behind the counter, and a lot of trial and error, to determine if you're purchasing the correct product. Where it's legal, doctors will not prescribe it, they will "recommend" it so you can purchase it legally. I believe that Colorado has the most developed market (google Charlotte's oil), but you must see a doctor in Colorado to get it there. Once you do that, none of the doctors in your area will be able to treat your little girl. If you don't live there, you can travel there, see a doctor and get a "prescription" and give it a try. Be careful travelling home as it's still a federal crime to transport marijuana based products either by car or air travel. I understand several of the states surrounding Colorado have been pulling cars with out of state plates leaving Colorado over just to see if they have any controlled substances inside (yes, CBD oil is a controlled substance). They can keep your car and anything else that's in it. You can have the Colorado supplier mail it you, but then you're sending a controlled substance through the mail... Feds! I was told by a lawyer that U.S. mail is better because you still have an expectation of privacy with them. They would have to get a warrant to open the package... not so with private shippers. I'm not telling you not to do it, I know several families in my area that have had great success with it. But there are significant drawbacks and some serious risks. My son (now 9) has been taking multiple AED's since he was two, and yes, there were significant side effects, and yes, they suck. Aggression, moodiness, cognitive issues and sleep issues. It took a fair amount of time and a lot of trial and error to come up with the current combination that actually seems to be working (with minimal side effects). You should know that even with the best doctors, finding the right, or best, treatment is a crap shoot. Sometimes the AED's that are recommended for a specific type of seizure don't work and sometimes that type that another that may not be does. Some of them are horribly expensive. All that being said, it still beats watching helplessly as your child is in the throws of a severe seizure.Try to contact the closest chapter of the Epilepsy foundation. They will provide you a great deal of help. Also, use this website. There is a great deal of information about treatment options, medications and support. Good luck and God bless.

The FDA has just approved a new medication based on refined CBD oil (GW Pharmaceuticals-Epidoliox (not sure of the spelling)).  No special certification will be required to prescribe it (I think).  In states where it is legal to purchase CBD oil from an approved shop, you'll have to trust the people behind the counter, and a lot of trial and error, to determine if you're purchasing the correct product.  Where it's legal, doctors will not prescribe it, they will "recommend" it so you can purchase it legally.  I believe that Colorado has the most developed market (google Charlotte's oil), but you must see a doctor in Colorado to get it there. Once you do that, none of the doctors in your area will be able to treat your little girl.  If you don't live there, you can travel there, see a doctor and get a "prescription" and give it a try.  Be careful travelling home as it's still a federal crime to transport marijuana based products either by car or air travel.  I understand several of the states surrounding Colorado have been pulling cars with out of state plates leaving Colorado over  just to see if they have any controlled substances inside (yes, CBD oil is a controlled substance).  They can keep your car and anything else that's in it.  You can have the Colorado supplier mail it you, but then you're sending a controlled substance through the mail...  Feds!  I was told by a lawyer that U.S. mail is better because you still have an expectation of privacy with them.  They would have to get a warrant to open the package... not so with private shippers. I'm not telling you not to do it, I know several families in my area that have had great success with it.  But there are significant drawbacks and some serious risks.  My son (now 9) has been taking multiple AED's since he was two, and yes, there were significant side effects, and yes, they suck.  Aggression, moodiness, cognitive issues and sleep issues.  It took a fair amount of time and a lot of trial and error to come up with the current combination that actually seems to be working (with minimal side effects).  You should know that even with the best doctors, finding the right, or best, treatment is a crap shoot.  Sometimes the AED's that are recommended for a specific type of seizure don't work and sometimes that type that another that may not be does. Some of them are horribly expensive.  All that being said, it still beats watching helplessly as your child is in the throws of a severe seizure.Try to contact the closest chapter of the Epilepsy foundation.  They will provide you a great deal of help.  Also, use this website.  There is a great deal of information about treatment options, medications and support.  Good luck and God bless. 

The FDA has just approved a new medication based on refined CBD oil (GW Pharmaceuticals-Epidoliox (not sure of the spelling)). No special certification will be required to prescribe it (I think). In states where it is legal to purchase CBD oil from an approved shop, you'll have to trust the people behind the counter, and a lot of trial and error, to determine if you're purchasing the correct product. Where it's legal, doctors will not prescribe it, they will "recommend" it so you can purchase it legally. I believe that Colorado has the most developed market (google Charlotte's oil), but you must see a doctor in Colorado to get it there. Once you do that, none of the doctors in your area will be able to treat your little girl. If you don't live there, you can travel there, see a doctor and get a "prescription" and give it a try. Be careful travelling home as it's still a federal crime to transport marijuana based products either by car or air travel. I understand several of the states surrounding Colorado have been pulling cars with out of state plates leaving Colorado over just to see if they have any controlled substances inside (yes, CBD oil is a controlled substance). They can keep your car and anything else that's in it. You can have the Colorado supplier mail it you, but then you're sending a controlled substance through the mail... Feds! I was told by a lawyer that U.S. mail is better because you still have an expectation of privacy with them. They would have to get a warrant to open the package... not so with private shippers. I'm not telling you not to do it, I know several families in my area that have had great success with it. But there are significant drawbacks and some serious risks. My son (now 9) has been taking multiple AED's since he was two, and yes, there were significant side effects, and yes, they suck. Aggression, moodiness, cognitive issues and sleep issues. It took a fair amount of time and a lot of trial and error to come up with the current combination that actually seems to be working (with minimal side effects). You should know that even with the best doctors, finding the right, or best, treatment is a crap shoot. Sometimes the AED's that are recommended for a specific type of seizure don't work and sometimes that type that another that may not be does. Some of them are horribly expensive. All that being said, it still beats watching helplessly as your child is in the throws of a severe seizure.Try to contact the closest chapter of the Epilepsy foundation. They will provide you a great deal of help. Also, use this website. There is a great deal of information about treatment options, medications and support. Good luck and God bless.

It sounds like you need a

Submitted by RTLEmum on Tue, 2018-08-14 - 11:11

It sounds like you need a second opinion from another epileptologist. Make sure you are at a Level 4 epilepsy center. Try to find a Level 4 epilepsy center that has patients on CBD oil to see if your daughter is a candidate. One thing that is really a drag is that it is hard to distinguish the effects of medication from the side effects of seizures. Seizures cause a lot of symptoms, long after the seizures. There are many medications. If you see another physician, you might find the right medication for her. That might be CBD oil, but it might not be. CBD oil does not work for all types of epilepsy. You don't want your daughter not to have an epileptologist because if you deal with a severe seizure at some point, you don't want to be going through that without medical advice. On the other hand, you need a physician who understands you and that you like. They are out there. You might have to try a few.