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Topic: Infantile Spasms & Tuberous Sclerosis

My son is 2 and contracted encephalitis (Herpes Virus) when he was 9 months old in September 2015. He recovered well and seemed to regain his current skills which were sitting unaided, holding his bottle, playing with toys etc although he had weakness in his left side. However January 16 his MRI confirmed Significant damage although his consultant said he did not reflect the damage that can be seen on the scan. That all changed a month later when he developed infantile spasms which caused him to regress. He had been on Vigabatrin , Clobozan, Keppra , is currently on Epilem , Topirimate , Ketogenic diet. His last MRI in March shows no real change in the seizures. He has since shown changes in his seizures he does drops and eye rolls more than just the spasm. My little boy has disappeared he doesn't giggle or smile anymore is unable To sit up struggles to hold any toys. I have read so much about CBD Oil and I just can't seem to get anything concrete from anyone. His consultants secretary advised that they would Not be able to treat him with that NHS or private, until trial results were published and it was licenced.Please can anyone advise is this something that is weeks months or Years away I have been told short of taking my son to the US There is nothing I can do in the UK. For anyone that has read to the bottom thank you so much and if you have advice it would be so gratefully received.

Comments

Unless things have changed a

Submitted by just_joe on Tue, 2017-06-06 - 11:56

Unless things have changed a lot the MRI will show the brain as it is, Which means anything on the brain will be seen. Damage seen can cause an electrical impulse to hit wrong. For me that is what caused my epilepsy. I have scared brain tissue from a concussion I got in a fall at the age of 6-8. My seizures started at 12-13. The MRI will not show electrical impulses hitting wrong in the brain. What causes a seizure is an electrical impulse hitting wrong in the brain. (the point of origin) That impulse hitting wrong causes a chain reaction which is the seizure itself. Medications are to stop those impulses from hitting wrong. It takes time and working with a good neurologist to find the right medication at the right dosage to stop all the seizures. It seems like you have tried several medications. Without knowing how long he was on them or how long it too to move from one medication to another it is hard to tell if any of the medications reduced the number of seizures. Understand that it takes 3-4 weeks for the medication to build in his body and that long to get out of his body after the last pill is taken. The build up is to have the therapeutic levels in his body so if a medication dosage is taken late or even missed it will keep a breakthrough seizure from happening. Meaning reducing one medication while adding another has 2 medication working one building while the other is being reduced. So in order to find out if a medication is working it takes a month to get the therapeutic levels set and at least a month to se if there is a reduction in the number of seizures was made. It is not a child I am talking about since I am the one with epilepsy. I speak from my own experiences and medication or dosage changes.As for CBD oil.. It is still being tested. Resulted are there and it is available in some states. But not every state. You see it is still against the law to use MJ in some states. More testing and approval does need to be done. So you are not the only person wanting this approved. Yes it has helped many people. But it didn't help all those that took it or used it.

Unless things have changed a lot the MRI will show the brain as it is, Which means anything on the brain will be seen.  Damage seen can cause an electrical impulse to hit wrong. For me that is what caused my epilepsy. I have scared brain tissue from a concussion I got in a fall at the age of 6-8. My seizures started at 12-13. The MRI will not show electrical impulses hitting wrong in the brain. What causes a seizure is an electrical impulse hitting wrong in the brain. (the point of origin) That impulse hitting wrong causes a chain reaction which is the seizure itself. Medications are to stop those impulses from hitting wrong. It takes time and working with a good neurologist to find the right medication at the right dosage to stop all the seizures. It seems like you have tried several medications. Without knowing how long he was on them or how long it too to move from one medication to another it is hard to tell if any of the medications reduced the number of seizures. Understand that it takes 3-4 weeks for the medication to build in his body and that long to get out of his body after the last pill is taken. The build up is to have the therapeutic levels in his body so if a medication dosage is taken late or even missed it will keep a breakthrough seizure from happening. Meaning reducing one medication while adding another has 2 medication working one building while the other is being reduced. So in order to find out if a medication is working it takes a month to get the therapeutic levels set and at least a month to se if there is a reduction in the number of seizures was made. It is not a child I am talking about since I am the one with epilepsy. I speak from my own experiences and medication or dosage changes.As for CBD oil.. It is still being tested. Resulted are there and it is available in some states. But not every state. You see it  is still against the law to use MJ in some states. More testing and approval does need to be done. So you are not the only person wanting this approved. Yes it has helped many people. But it didn't help all those that took it or used it.

Unless things have changed a lot the MRI will show the brain as it is, Which means anything on the brain will be seen. Damage seen can cause an electrical impulse to hit wrong. For me that is what caused my epilepsy. I have scared brain tissue from a concussion I got in a fall at the age of 6-8. My seizures started at 12-13. The MRI will not show electrical impulses hitting wrong in the brain. What causes a seizure is an electrical impulse hitting wrong in the brain. (the point of origin) That impulse hitting wrong causes a chain reaction which is the seizure itself. Medications are to stop those impulses from hitting wrong. It takes time and working with a good neurologist to find the right medication at the right dosage to stop all the seizures. It seems like you have tried several medications. Without knowing how long he was on them or how long it too to move from one medication to another it is hard to tell if any of the medications reduced the number of seizures. Understand that it takes 3-4 weeks for the medication to build in his body and that long to get out of his body after the last pill is taken. The build up is to have the therapeutic levels in his body so if a medication dosage is taken late or even missed it will keep a breakthrough seizure from happening. Meaning reducing one medication while adding another has 2 medication working one building while the other is being reduced. So in order to find out if a medication is working it takes a month to get the therapeutic levels set and at least a month to se if there is a reduction in the number of seizures was made. It is not a child I am talking about since I am the one with epilepsy. I speak from my own experiences and medication or dosage changes.As for CBD oil.. It is still being tested. Resulted are there and it is available in some states. But not every state. You see it is still against the law to use MJ in some states. More testing and approval does need to be done. So you are not the only person wanting this approved. Yes it has helped many people. But it didn't help all those that took it or used it.

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