Daughter just got diagnosed

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My daughter is 3 years old and just got diagnosed with Epilepsy.. she started having seizures Sunday, got diagnosed Monday night and has been having them ever since. It came on so sudden, and threw out life upside down. She got put on Keppra, which shes still having seizures so it's not completely working yet.. they are slowly upping her dosage week by week. She seems to have side effects from this, very hyperactive but then very angry at the same time. Its hard to redirect her when she gets angry, and she gets upset at basically nothing.. is this normal? She has clusters of seizures, we had to give her emergency drug last night, and she still had another seizure less than 8 hours later. My husband and I are having such a difficult time coping and adjusting with this. Everytime we call the doctor, we feel as though we are bothering when we are just scared and worried.. we also have another 7 week old child at home which makes this even more difficult than it already is. When will our daughter get better? When will she be back to her happy self?! When will I be reassured.. this is so hard.

Comments

She got put on Keppra, which

Submitted by just_joe on Sat, 2018-04-21 - 12:59

She got put on Keppra, which shes still having seizures so it's not completely working yet.. << Seizure meds are not like aspirin where once they are taken they go away after a certain number of ours. The medication is working but the dosage the neurologist wants has not reached the therapeutic levels yet. Reaching that level can take time especially if the dosage is changed time and again. If they have increased the dosage and it will be done weekly then the neurologists are trying to get the level set at the lowest level that will control her seizures. Too much medication is just as bad as to little. A medication and dosage for one person may not work on the next. Mainly because each persons body is different. Those side effects will go away after her body gets used to the medication as it build to the therapeutic levels the neurologist wants.Medications for clusters are to stop the cluster. I am aware of them since I take one to stop my seizures from clustering. Did the neurologist tell you when to use it and how? For some people it is right after the first seizures. For others it is after the second. I know mine were after the second but we changed that because after the second I might still have a cluster.. That stops the cluster. If the dosage isn't completely set then the seizure 8 hours later is not a cluster but regular seizure.Yes it is hard. But I was the person with epilepsy and was about 13 when I was diagnosed back in 1963-64. Oh and computers were not in homes back then.Your daughter will get better after the medications have reached the therapeutic levels the neurologist wants. She will be her happy self again. You will get assurance one you see the number of seizures going down.It will take time to get used to the medication. Oh and do take the meds as directed. If it says 2 times a day then those times need to be close to 12 hours apart unless the neurologists says otherwise. The therapeutic levels that will be in her body is to stop break through seizures from happening in the case a dosage is taken late or missed.I would also suggest you get the My Seizure Diary. It has things to use that can help in maintaining the medications and times taken. There s a note pad in it that you can use to note anything that was different tat day. Use it to note things that happened during the seizure and length of time in it. Not the times it took to give her the rescue medications and how long it was after the seizure.This site can b used for researching the different types of seizures and epilepsy. Start with the learn section.I hope this helps and she gets seizure freeJoe

She got put on Keppra, which shes still having seizures so it's not completely working yet.. << Seizure meds are not like aspirin where once they are taken they go away after a certain number of ours. The medication is working but the dosage the neurologist wants has not reached the therapeutic levels yet. Reaching that level can take time especially if the dosage is changed time and again. If they have increased the dosage and it will be done weekly then the neurologists are trying to get the level set at the lowest level that will control her seizures. Too much medication is just as bad as to little. A medication and dosage for one person may not work on the next. Mainly because each persons body is different. Those side effects will go away after her body gets used to the medication as it build to the therapeutic levels the neurologist wants.Medications for clusters are to stop the cluster. I am aware of them since I take one to stop my seizures from clustering. Did the neurologist tell you when to use it and how? For some people it is right after the first seizures. For others it is after the second. I know mine were after the second but we changed that because after the second I might still have a cluster.. That stops the cluster. If the dosage isn't completely set then the seizure 8 hours later is not a cluster but  regular seizure.Yes it is hard. But I was the person with epilepsy and was about 13 when I was diagnosed back in 1963-64. Oh and computers were not in homes back then.Your daughter will get better after the medications have reached the therapeutic levels the neurologist wants. She will be her happy self again. You will get assurance one you see the number of seizures going down.It will take time to get used to the medication. Oh and do take the meds as directed. If it says 2 times a day then those times need to be close to 12 hours apart unless the neurologists says otherwise. The therapeutic levels that will be in her body is to stop break through seizures from happening in the case a dosage is taken late or missed.I would also suggest you get the My Seizure Diary. It has things to use that can help in maintaining the medications and times taken. There s a note pad in it that you can use to note anything that was different tat day. Use it to note things that happened during the seizure and length of time in it. Not the times it took to give her the rescue medications and how long it was after the seizure.This site can b used for researching the different types of seizures and epilepsy. Start with the learn section.I hope this helps and she gets seizure freeJoe

She got put on Keppra, which shes still having seizures so it's not completely working yet.. << Seizure meds are not like aspirin where once they are taken they go away after a certain number of ours. The medication is working but the dosage the neurologist wants has not reached the therapeutic levels yet. Reaching that level can take time especially if the dosage is changed time and again. If they have increased the dosage and it will be done weekly then the neurologists are trying to get the level set at the lowest level that will control her seizures. Too much medication is just as bad as to little. A medication and dosage for one person may not work on the next. Mainly because each persons body is different. Those side effects will go away after her body gets used to the medication as it build to the therapeutic levels the neurologist wants.Medications for clusters are to stop the cluster. I am aware of them since I take one to stop my seizures from clustering. Did the neurologist tell you when to use it and how? For some people it is right after the first seizures. For others it is after the second. I know mine were after the second but we changed that because after the second I might still have a cluster.. That stops the cluster. If the dosage isn't completely set then the seizure 8 hours later is not a cluster but regular seizure.Yes it is hard. But I was the person with epilepsy and was about 13 when I was diagnosed back in 1963-64. Oh and computers were not in homes back then.Your daughter will get better after the medications have reached the therapeutic levels the neurologist wants. She will be her happy self again. You will get assurance one you see the number of seizures going down.It will take time to get used to the medication. Oh and do take the meds as directed. If it says 2 times a day then those times need to be close to 12 hours apart unless the neurologists says otherwise. The therapeutic levels that will be in her body is to stop break through seizures from happening in the case a dosage is taken late or missed.I would also suggest you get the My Seizure Diary. It has things to use that can help in maintaining the medications and times taken. There s a note pad in it that you can use to note anything that was different tat day. Use it to note things that happened during the seizure and length of time in it. Not the times it took to give her the rescue medications and how long it was after the seizure.This site can b used for researching the different types of seizures and epilepsy. Start with the learn section.I hope this helps and she gets seizure freeJoe

It’s common to have anger on

Submitted by Amy Jo on Sat, 2018-04-21 - 23:30

It’s common to have anger on keppra and there are other potential side effects. Some side effects might go away and others can stay but there’s no way to know who will be affected and who will ask for a different drug. When we dropped keppra, our neurologist said about a third of their patients (all kids) drop it. I think unworkable side effects occur at a higher rate in children than for adults. Our neuro group recommended B6 when taking keppra, your doc might have a similar recommendation. Do keep them apprised of her changes, moods and otherwise.If seizures occur less on keppra, that’s helpful to report.

Sorry... I see now that you

Submitted by Shon Renee on Wed, 2018-04-25 - 10:27

Sorry... I see now that you wrote clusters of seizures.... but still, it may take time to find the right regimen for her particular type of seizure. It took me about 6 weeks to see improvement in the seizure activity, now waiting on the behavioral side effects to subside. And hopefully this week of no seizures turns into two weeks, one month, etc