daughters with epilepsy

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I do not know how to write this but I do know that I am struggling with the uncertainty of epilepsy. I have identical twin daughters ,Allie and Abbie, and Allie started suffering from tonic clonic seizures 4 years ago. After the shock of the first one and abnormal eggs she was put on meds the last being keppra which seems to have controlled her seizures for the last three years. then last July my oldest daughter, Ciara, age 16 suffered a seizure. Talk about a shock we had been watching the identical twin but was quite surprised when she was diagnosed with JME. Even though Ciara was diagnosed the doctors wanted to continue to decrease Allie's meds as she had been seizure free for over three years. she finished her meds in December and the suffered a seizure in February. she is now back on keppra. all of my girls love sports and are very active. Their favorite sports are swim team and gymnastics. To say that I am worried goes without saying but I try and let the girls experience all the joys of being kids. Now my questions.. Does any mother ever really sleep when their kids have this? I thought it was hard with the younger one but Ciara has been a nightmare in that she hates the meds and has trouble getting enough sleep at night. Her doctor told her she should be in bed by 9:00 every night. She can't drive now and is very angry about this whole thing. Her grades have fallen and the 9:00 bedtime is impossible with her trying to get her grades up. What has worked for other families? Also I am terrified Abbie is starting to show signs of having small seizures. I really think I might go crazy if she ends up having this. I guess I just needed someone who would understand how this is never far from my mind and how to live with all of this. we live on a ranch in a very rural are. I hate that my kids can't go ride their horses or play on the trampoline without me waiting for the next emergency. Thanks Audra

Comments

Welcome AudraI am not a

Submitted by just_joe on Tue, 2016-03-08 - 17:41

Welcome AudraI am not a parent of someone with epilepsy. Thats because I am the one with epilepsy. I'll start with Allie. You posted she had gone 3 years without a seizure which is great. She took her last medications in dec. She had a seizure in feb. Seizure medications are built up in the persons body. After they take their last pill hours later doesn't count as when the medication leaves the body. It tan take 6-8 weeks for her seizure medications to completely get out of her system. So yes she does need to get back on her meds. Not do not fret since there are people who went years without a seizure and were taken off them only to be put back on them and many of them are still seizure free.So posted she may be having small seizures. Depending on what her dosages were and how long she has been taking them again would make a difference. Since all the medications had left her body it will take some time to build up the therapeutic levels where the neurologist wants them to be. Understand that building up does take time. After 2 months do contact the neurologist and let him know if she is still having the small seizures.Anybody at any age can get epilepsy. It does not discriminate. Which could be why Ciara could have epilepsy. If she had fall and hit her head hard she might have had a concussion which if not looked at right it could cause scared brain tissue. Been there done that. My epilepsy is cause by just that. I hit my head hard in a fall. In that fall I hit my head on the left side spinning it the other direction and slamming my mouth into a rain on the bottom bunk of the bunk bed. The doctors were more worried about the gash in my tongue and the cut on the inside of my jaw then the bump on my head since it too 32 stitches to sew them up.I was a teen when I started having seizures. Doc and I had discussed stopping my meds when I had one after going almost 3 years without one. I have never driven but I do know how to drive and will if needed. You see I have been living and dealing with epilepsy for 50+ years. My seizures today would be called simple partial seizures. Because I have worked with Doc and have asked questions we have found medications that have reduced the number of seizures I have to one seizure every 8-14 days and those seizures last 2-8 seconds. I had one in my PCP's office and he thought I was thinking of a word I wanted to use when I told him it was a seizure he now knows Doc and I had worked well at seizure control and medications. He was glad I had kept working with Doc and told me to keep him. Only to find out I have to get another one since Doc retired a month later.You will hear from doctors about the triggers and one of them is sleep. Each persons triggers are different. As a teen I went to sleep after finishing my homework. Usually about 1030. I had a paper route and the papers were dropped off at 430. Folding and trowing them took time so I was up around 430 and needed to be finished by 7. If not I walked the 2-3 miles to school. So i got about 6 hours sleep. When I went to college I worked 8 hours a day and went to college at night. I finished studying around 1 am so I still got about 5-6 hours sleep. Once I moved to Texas I still only got 5-6 hours sleep. So almost all my life I got about 6 hours of sleep a night. Sports was one thing I loved and yes I loved swimming. Relax some and let them do their thing but they need someone with them when they swim or play, Just in case they do have an accident. ANYBODY can have an accident on a trampoline. My niece broke her are when she landed wrong and came off onto the yard. Another niece broke her arm when her brother was chasing her and she slipped. So accidents do happen. I know I drove Mom crazy but then most teens do that. While I wasn't on a farm I did have a garden and we did live in a little bitty community away from a city, I went hunting and mountain climbing so that too is sports. Parents kept me from playing sports but I still lettered in football. Hey they need managers. I had to know the plays and be able to get things when needed.I hope this helps and your daughters get their seizures controlledJoe

Welcome AudraI am not a parent of someone with epilepsy. Thats because I am the one with epilepsy. I'll start with Allie. You posted she had gone 3 years without a seizure which is great. She took her last medications in dec. She had a seizure in feb. Seizure medications are built up in the persons body. After they take their last pill hours later doesn't count as when the medication leaves the body. It tan take 6-8 weeks for her seizure medications to completely get out of her system. So yes she does need to get back on her meds. Not do not fret since there are people who went years without a seizure and were taken off them only to be put back on them and many of them are still seizure free.So posted she may be having small seizures. Depending on what her dosages were and how long she has been taking them again would make a difference. Since all the medications had left her body it will take some time to build up the therapeutic levels where the neurologist wants them to be. Understand that building up does take time. After 2 months do contact the neurologist and let him know if she is still having the small seizures.Anybody at any age can get epilepsy. It does not discriminate. Which could be why Ciara could have epilepsy. If she had fall and hit her head hard she might have had a concussion which if not looked at right it could cause scared brain tissue. Been there done that. My epilepsy is cause by just that. I hit my head hard in a fall. In that fall I hit my head on the left side spinning it the other direction and slamming my mouth into a rain on the bottom bunk of the bunk bed. The doctors were more worried about the gash in my tongue and the cut on the inside of my jaw then the bump on my head since it too 32 stitches to sew them up.I was a teen when I started having seizures. Doc and I had discussed stopping my meds when I had one after going almost 3 years without one. I have never driven  but I do know how to drive and will if needed. You see I have been living and dealing with epilepsy for 50+ years. My seizures today would be called simple partial seizures. Because I have worked with Doc and have asked questions we have found medications that have reduced the number of seizures I have to one seizure every 8-14 days and those seizures last 2-8 seconds. I had one in my PCP's office and he thought I was thinking of a word I wanted to use when I told him it was a seizure he now knows Doc and I had worked well at seizure control and medications. He was glad I had kept working with Doc and told me to keep him. Only to find out I have to get another one since Doc retired a month later.You will hear from doctors about the triggers and one of them is sleep. Each persons triggers are different. As a teen I went to sleep after finishing my homework. Usually about 1030. I had a paper route and the papers were dropped off at 430. Folding and trowing them took time so I was up around 430 and needed to be finished by 7. If not I walked the 2-3 miles to school. So i got about 6 hours sleep. When I went to college I worked 8 hours a day and went to college at night. I finished studying around 1 am so I still got about 5-6 hours sleep. Once I moved to Texas I still only got 5-6 hours sleep. So almost all my life I got about 6 hours of sleep a night. Sports was one thing I loved and yes I loved swimming. Relax some and let them do their thing but they need someone with them when they swim or play, Just in case they do have an accident. ANYBODY can have an accident on a trampoline. My niece broke her are when she landed wrong and came off onto the yard. Another niece broke her arm when her brother was chasing her and she slipped. So accidents do happen. I know I drove Mom crazy but then most teens do that. While I wasn't on a farm I did have a garden and we did live in a little bitty community away from a city, I went hunting and mountain climbing so that too is sports. Parents kept me from playing sports but I still lettered in football. Hey they need managers. I had to know the plays and be able to get things when needed.I hope this helps and your daughters get their seizures controlledJoe

Welcome AudraI am not a parent of someone with epilepsy. Thats because I am the one with epilepsy. I'll start with Allie. You posted she had gone 3 years without a seizure which is great. She took her last medications in dec. She had a seizure in feb. Seizure medications are built up in the persons body. After they take their last pill hours later doesn't count as when the medication leaves the body. It tan take 6-8 weeks for her seizure medications to completely get out of her system. So yes she does need to get back on her meds. Not do not fret since there are people who went years without a seizure and were taken off them only to be put back on them and many of them are still seizure free.So posted she may be having small seizures. Depending on what her dosages were and how long she has been taking them again would make a difference. Since all the medications had left her body it will take some time to build up the therapeutic levels where the neurologist wants them to be. Understand that building up does take time. After 2 months do contact the neurologist and let him know if she is still having the small seizures.Anybody at any age can get epilepsy. It does not discriminate. Which could be why Ciara could have epilepsy. If she had fall and hit her head hard she might have had a concussion which if not looked at right it could cause scared brain tissue. Been there done that. My epilepsy is cause by just that. I hit my head hard in a fall. In that fall I hit my head on the left side spinning it the other direction and slamming my mouth into a rain on the bottom bunk of the bunk bed. The doctors were more worried about the gash in my tongue and the cut on the inside of my jaw then the bump on my head since it too 32 stitches to sew them up.I was a teen when I started having seizures. Doc and I had discussed stopping my meds when I had one after going almost 3 years without one. I have never driven but I do know how to drive and will if needed. You see I have been living and dealing with epilepsy for 50+ years. My seizures today would be called simple partial seizures. Because I have worked with Doc and have asked questions we have found medications that have reduced the number of seizures I have to one seizure every 8-14 days and those seizures last 2-8 seconds. I had one in my PCP's office and he thought I was thinking of a word I wanted to use when I told him it was a seizure he now knows Doc and I had worked well at seizure control and medications. He was glad I had kept working with Doc and told me to keep him. Only to find out I have to get another one since Doc retired a month later.You will hear from doctors about the triggers and one of them is sleep. Each persons triggers are different. As a teen I went to sleep after finishing my homework. Usually about 1030. I had a paper route and the papers were dropped off at 430. Folding and trowing them took time so I was up around 430 and needed to be finished by 7. If not I walked the 2-3 miles to school. So i got about 6 hours sleep. When I went to college I worked 8 hours a day and went to college at night. I finished studying around 1 am so I still got about 5-6 hours sleep. Once I moved to Texas I still only got 5-6 hours sleep. So almost all my life I got about 6 hours of sleep a night. Sports was one thing I loved and yes I loved swimming. Relax some and let them do their thing but they need someone with them when they swim or play, Just in case they do have an accident. ANYBODY can have an accident on a trampoline. My niece broke her are when she landed wrong and came off onto the yard. Another niece broke her arm when her brother was chasing her and she slipped. So accidents do happen. I know I drove Mom crazy but then most teens do that. While I wasn't on a farm I did have a garden and we did live in a little bitty community away from a city, I went hunting and mountain climbing so that too is sports. Parents kept me from playing sports but I still lettered in football. Hey they need managers. I had to know the plays and be able to get things when needed.I hope this helps and your daughters get their seizures controlledJoe

daughters with epilepsy

Comments

Welcome AudraI am not a

Submitted by just_joe on Tue, 2016-03-08 - 17:41

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