changing my sons meds and scared

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My son was diagnosed with generalized epilepsy just over a month ago. He has t/c seizures and has gone t/c status. They put him on valproic acid, started at 150mg 2x a day and now he is up to 250mg 2x a day because he had another seizure 2 weeks after he started the meds. We have had sever mood changes with him on this med. He went from being a very loveable, sweet, caring 3 year old to hitting, biting, pinching, and having manic episodes where there is no getting through to him. After 4 weeks of this behaviour, and continued seizures I talked to our neurologist and they are switching his meds. Said he is reacting too severely, and they don't seem to be working good enough.I am terrified! He is slowly being weaned off the valproic acid and on to keppra (apparently the behaviours we are seeing can be worse on keppra). The keppra is just a middle man. The med they want him on is lamotrigine, but it reacts badly with valproic acid. Does anyone else have experience with med changes they would be willing to share with me, so I can potentially have a better understanding of what to expect over the next few weeks? I know everyone and every med is different, but I am so scared we will have a big increase in seizures, or go status again durring the transition.

Comments

Lots of people do well on

Submitted by Anonymous on Mon, 2014-08-11 - 10:35

Lots of people do well on keppra and the drug works very differently so try not to read much into the long scary lists of side effects (all AEDs have scary side effects, one could drive oneself mad with the extra worry, most people don't see all those effects). Do you have emergency meds to use in case your son goes into status again?We are adding lamotrigine right now, going slowly (taking months, not weeks). The slow schedule has helped my child adjust to the side effects we have seen but also reduces chances of bad rash (SJS or TEN - also increased chance if the person is on valproic acid so it is a life threatening side effect they are doing what they can to avoid). My child is 7 (28kg) so getting to the target dose won't take so long for you. Otherwise we have very different situations as my child has focal seizures and the lamotrigine is intended as a second drug.

I have had many med changes.

Submitted by Anonymous on Mon, 2014-08-11 - 13:44

I have had many med changes. What your son was doinf is one of the side effects to his medication. As for Keppra it is the best medication I have used to reduce the number of seizures I was having and it also shortens the time in the seizures. As for side effects they do happen and you can find posts about them even in here. However I have been in drug studies for new medications. So I do know how those side effects do get listed. In those studies we had diarys and we were to write down ANYTHING that was different on each day whether it was getting dizzy, ann upset stomach or anything else. Can a person get dizzy by standing up to fast? Or can you get an upset stomach from eating at a restaurant you haven't been to? The amswer to thos questions is YES. I do know that there are people who get side effects and I have had a few. Most medications have side effects that do effect 5-8% of the people taking it. Those will be the people posting about the side effects they had. So if the medication is working for 92-95% of the people taking it you will rarely see a post saying the medication works good. I have used both medications your son has been on and they both work well. I wanted better control for the seizures I was having which is why I switched meds.. Oh and as for status there are rescue meds for that which can be used at home. I have a cluster of seizures from time to time. A cluster of seizures after a previous seizure when I am not completely focused (getting back to normal) I use one prescribed by Doc and after the second seizure withing 2-5 minutes I take it and I don't have another seizure. So you might ask his neurologist about a rescue medication. As for keppra if you checked you would see a lot of posts about it. At one time people werwe calling it kepprage since it was a mood changer and yes it does happen to some people. I had no problems changing to it and thet was without weaning me off and slowly putting me on the keppra. I had to change because I was getting to a toxic state on the other medication. The seizures I was having lasted 2-5 minutes and the focus time (getting back to normal) was 15-45 minutes, Those same seizures today last 2-5 seconds and at times 10 and the focus time is also in the seconds. Today I can have a seizure while in a crowd of people and most people would know nothing of the seizure. All of those were started when neurologists went into specializations. I have grand mal, petite mal and focal motor epilepsy. The worst, the slightest and with focal seizures I can have many different seizures since focal seizures can and have generalized when I had them. I have been very blessed since I have not had a convulsive seizure since 1970. The neurologist may not want your son on any other nedication since keppra works on most types of seizures. It may have been created for one type of seizure and was tested for that type. But the testing does not stop once approval has been issued. Testing on other types of seizures goes on as well as testing the med to see if it works with other nedications. I was having a few more seizures then I wanted and Doc said thet the maker wanted to test to see if Vimpat added to keppra would help bring down the number of seizures. Since we started the coupling the number of seizures has been reduced. I was having 2-4 seizures a day 1-2 days a week. The number of seizures was reduced and the vimpat was increased Now I am having a seizure every 8-14 days and I could have one while talking to you and you would not know I had one Keppra reduced the number of seizures and shortened the time in them the additions of another medications has reduced the number of seirures farther.I would also suggest you get the My Epilepsy Diary which can be found in the get help section, Watch the video which tells you how to use it. If you give his neurologist permission to bring it up he can look at all the data and the graphs which could help him come up with medications, dosages and procedures which can help get your son seizure free. I hope this helps

I have had many med changes. What your son was doinf is one of the side effects to his medication. As for Keppra it is the best medication I have used to reduce the number of seizures I was having and it also shortens the time in the seizures.  As for side effects they do happen and you can find posts about them even in here. However I have been in drug studies for new medications. So I do know how those side effects do get listed. In those studies we had diarys and we were to write down ANYTHING that was different on each day whether it was getting dizzy, ann upset stomach or anything else. Can a person get dizzy by standing up to fast? Or can you get an upset stomach from eating at a restaurant you haven't been to? The amswer to thos questions is YES. I do know that there are people who get side effects and I have had a few. Most medications have side effects that do effect 5-8% of the people taking it. Those will be the people posting about the side effects they had. So if the medication is working for 92-95% of the people taking it you will rarely see a post saying the medication works good. I have used both medications your son has been on and they both work well. I wanted better control for the seizures I was having which is why I switched meds.. Oh and as for status there are rescue meds for that which can be used at home. I have a cluster of seizures from time to time. A cluster of seizures after a previous seizure when I am not completely focused (getting back to normal) I use one prescribed by Doc and after the second seizure withing 2-5 minutes I take it and I don't have another seizure. So you might ask his neurologist about a rescue medication. As for keppra if you checked you would see a lot of posts about it. At one time people werwe calling it kepprage since it was a mood changer and yes it does happen to some people. I had no problems changing to it and thet was without weaning me off and slowly putting me on the keppra. I had to change because I was getting to a toxic state on the other medication. The seizures I was having lasted 2-5 minutes and the focus time (getting  back to normal) was 15-45 minutes, Those same seizures today last 2-5 seconds and at times 10 and the focus time is also in the seconds. Today I can have a seizure while in a crowd of people and most people would know nothing of the seizure. All of those were started when neurologists went into specializations. I have grand mal, petite mal and focal motor epilepsy. The worst, the slightest and with focal seizures I can have many different seizures since focal seizures can and have generalized when I had them. I have been very blessed since I have not had a convulsive seizure since 1970.  The neurologist may not want your son on any other nedication since keppra works on most types of seizures. It may have been created for one type of seizure and was tested for that type. But the testing does not stop once approval has been issued. Testing on other types of seizures goes on as well as testing the med to see if it works with other nedications. I was having a few more seizures then I wanted and Doc said thet the maker wanted to test to see if Vimpat added to keppra would help bring down the number of seizures. Since we started the coupling the number of seizures has been reduced. I was having 2-4 seizures a day 1-2 days a week. The number of seizures was reduced and the vimpat was increased Now I am having a seizure every 8-14 days and I could have one while talking to you and you would not know I had one  Keppra reduced the number of seizures and shortened the time in them the additions of another medications has reduced the number of seirures farther.I would also suggest you get the My Epilepsy Diary which can be found in the get help section, Watch the video which tells you how to use it. If you give his neurologist permission to bring it up he can look at all the data and the graphs which could help him come up with medications, dosages and procedures which can help get your son seizure free. I hope this helps

I have had many med changes. What your son was doinf is one of the side effects to his medication. As for Keppra it is the best medication I have used to reduce the number of seizures I was having and it also shortens the time in the seizures. As for side effects they do happen and you can find posts about them even in here. However I have been in drug studies for new medications. So I do know how those side effects do get listed. In those studies we had diarys and we were to write down ANYTHING that was different on each day whether it was getting dizzy, ann upset stomach or anything else. Can a person get dizzy by standing up to fast? Or can you get an upset stomach from eating at a restaurant you haven't been to? The amswer to thos questions is YES. I do know that there are people who get side effects and I have had a few. Most medications have side effects that do effect 5-8% of the people taking it. Those will be the people posting about the side effects they had. So if the medication is working for 92-95% of the people taking it you will rarely see a post saying the medication works good. I have used both medications your son has been on and they both work well. I wanted better control for the seizures I was having which is why I switched meds.. Oh and as for status there are rescue meds for that which can be used at home. I have a cluster of seizures from time to time. A cluster of seizures after a previous seizure when I am not completely focused (getting back to normal) I use one prescribed by Doc and after the second seizure withing 2-5 minutes I take it and I don't have another seizure. So you might ask his neurologist about a rescue medication. As for keppra if you checked you would see a lot of posts about it. At one time people werwe calling it kepprage since it was a mood changer and yes it does happen to some people. I had no problems changing to it and thet was without weaning me off and slowly putting me on the keppra. I had to change because I was getting to a toxic state on the other medication. The seizures I was having lasted 2-5 minutes and the focus time (getting back to normal) was 15-45 minutes, Those same seizures today last 2-5 seconds and at times 10 and the focus time is also in the seconds. Today I can have a seizure while in a crowd of people and most people would know nothing of the seizure. All of those were started when neurologists went into specializations. I have grand mal, petite mal and focal motor epilepsy. The worst, the slightest and with focal seizures I can have many different seizures since focal seizures can and have generalized when I had them. I have been very blessed since I have not had a convulsive seizure since 1970. The neurologist may not want your son on any other nedication since keppra works on most types of seizures. It may have been created for one type of seizure and was tested for that type. But the testing does not stop once approval has been issued. Testing on other types of seizures goes on as well as testing the med to see if it works with other nedications. I was having a few more seizures then I wanted and Doc said thet the maker wanted to test to see if Vimpat added to keppra would help bring down the number of seizures. Since we started the coupling the number of seizures has been reduced. I was having 2-4 seizures a day 1-2 days a week. The number of seizures was reduced and the vimpat was increased Now I am having a seizure every 8-14 days and I could have one while talking to you and you would not know I had one Keppra reduced the number of seizures and shortened the time in them the additions of another medications has reduced the number of seirures farther.I would also suggest you get the My Epilepsy Diary which can be found in the get help section, Watch the video which tells you how to use it. If you give his neurologist permission to bring it up he can look at all the data and the graphs which could help him come up with medications, dosages and procedures which can help get your son seizure free. I hope this helps