Dad

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hi. I've been trying to find a support group that deals with seizures and hopefully i've found the right spot.

A short version of my dad's story is that last year he had an upper GI bleed (due to liver cirrhosis) and he lost alot blood. When they stopped the bleeding, they had to reroute the blood flow around his liver, this caused his ammonia to build up because his liver wasn't getting as much blood flow to filter this ammonia out of his system. His ammonia got so high that he went to into a coma and began seizing.....

NOW, whenever his ammonia level gets elevated he has seizures....not just 1 seizure and we're good...he has back to back grand mal seizures and they do not stop without medical intervention.

My struggle is that he feels fabulous despite having had a stroke, coma, cirrhosis, hep c, etc. He has mild confusion but says he feels awesome. I hire people to stay with him about 9-10 hours a day. But this past round of seizure episodes, (2 days ago) caught us off guard because we had gone 6 months without one. How does one live and make plans with seizures like this?

I am trying to take a vacation (I'm 21 btw), and i'm terrified he will have a seizure before ileave or while i'm gone.

He is on Keppra 2000mg/2x a day
Gabapentin 400mg/3x a day

Recently was weaned off of VImpat 200mg/2x a day

THEN, Last night he was found seizing alone. Paramedics couldn't stop them with all their meds. ER tried for an hour and they finally calmed down.

AMmonia was 104.

Comments

There are several things that

Submitted by Anonymous on Thu, 2014-05-08 - 10:15

There are several things that come up when reading your post. You do not post whether your dad was diagnosed with epilepsy.Most medications use the liver to disolve medications. Keppra is one that uses the kidneys, I have taken medications and when taking some I was required to have blood level tests done yearly and with some 2 times a year. Those medications used the liver to disolve the medications. His amonia lever could have been triggering his seizures. Other things could have caused the sseizure so without specifics it could he hard to give direct answers. A person that is diabetic can also have seizures when their blood sugar level is off. You did not post whether he was diagnosed with epilepsy. His keppa dosage is high but not at maximum level. Gabapentin was designed to treat seizures and also treat other things. So they might be replacing the vimpat with it. Keppra is the best medication I have ever used in the 50+ years I have been living and dealing with epilepsy.. There are rescue medications that his neurologist can prescrib that can be taken that can stop a cluster of seizures. I have a cluster of seizures now and then and after the 2nd I take lorazapam which keeps the cluster from going into the 3rd 4th or further so my seizures stop after the second. But then most of my seizures a simple partial or focal seizures which are slight too. I know that people want to be sure that things are right before going on vacation or doing other things which is also what I do but if he is feeling good and he states the same then what you need to do is relax some and take your vacation. You can call his friend or a family member to check up on him or stay with him while you are gone. My mother is to be 84 and lives in San Diego so I call he a few times a week to make sure she is doing good and we talk about all kinds of things. On days I don't call her my sister and brothers call her so she is checked on daily and she also has friends that do go by and once or twice a week on wednesdays and thursdays. I call on those days later in the day. You can not plan around a seizure since you do not know when one will happen. So go about your business and do like you want. My family wanted to plan things around my seizures when I was younger and that was when we went fishing and did things that the whole family was involved in. I informed them that those trips helped everybody and that they should happen. I wanted to fish and rock hound and yes climb the mountains. They were small mountains but I enjoyed climbing them .I also found interestin rocks and arrowheads. The fish we caught was great in many meals . We went on those trips and the whol family and friends got involved. I hope this helps and he gets the assistance he needs and you enjoy your vacation Joe

There are several things that come up when reading your post. You do not post whether your dad was diagnosed with epilepsy.Most medications use the liver to disolve medications. Keppra is one that uses the kidneys, I have taken medications and when taking some I was required to have blood level tests done yearly and with some 2 times a year. Those medications used the liver to disolve the medications. His amonia lever could have been triggering his seizures. Other things could have caused the sseizure so without specifics it could he hard to give direct answers. A person that is diabetic can also have seizures when their blood sugar level is off. You did not post whether he was diagnosed with epilepsy. His keppa dosage is high but not at maximum level. Gabapentin was designed to treat seizures and also treat other things. So they might be replacing the vimpat with it. Keppra is the best medication I have ever used in the 50+ years I have been living and dealing with epilepsy.. There are rescue medications that his neurologist can prescrib that can be taken that can stop a cluster of seizures. I have a cluster of seizures now and then and after the 2nd I take lorazapam which keeps the cluster from going into the 3rd 4th or further so my seizures stop after the second. But then most of my seizures a simple partial or focal seizures which are slight too. I know that people want to be sure that things are right before going on vacation or doing other things which is also what I do but if he is feeling good and he states the same then what you need to do is relax some and take your vacation. You can call his friend or a family member to check up on him or stay with him while you are gone. My mother is to be 84 and lives in San Diego so I call he a few times a week to make sure she is doing good and we talk about all kinds of things. On days I don't call her my sister and brothers call her so she is checked on daily and she also has friends that do go by and once or twice a week on wednesdays and thursdays. I call on those days later in the day. You can not plan around a seizure since you do not know when one will happen.  So go about your business and do like you want. My family wanted to plan things around my seizures when I was younger and that was when we went fishing and did things that the whole family was involved in. I informed them that those trips helped everybody and that they should happen. I wanted to fish and rock hound and yes climb the mountains. They were small mountains but I enjoyed climbing them .I also found interestin rocks and arrowheads. The fish we caught was great in many meals . We went on those trips and the whol family and friends got involved.   I hope this helps and he gets the assistance he needs and you enjoy your vacation Joe

There are several things that come up when reading your post. You do not post whether your dad was diagnosed with epilepsy.Most medications use the liver to disolve medications. Keppra is one that uses the kidneys, I have taken medications and when taking some I was required to have blood level tests done yearly and with some 2 times a year. Those medications used the liver to disolve the medications. His amonia lever could have been triggering his seizures. Other things could have caused the sseizure so without specifics it could he hard to give direct answers. A person that is diabetic can also have seizures when their blood sugar level is off. You did not post whether he was diagnosed with epilepsy. His keppa dosage is high but not at maximum level. Gabapentin was designed to treat seizures and also treat other things. So they might be replacing the vimpat with it. Keppra is the best medication I have ever used in the 50+ years I have been living and dealing with epilepsy.. There are rescue medications that his neurologist can prescrib that can be taken that can stop a cluster of seizures. I have a cluster of seizures now and then and after the 2nd I take lorazapam which keeps the cluster from going into the 3rd 4th or further so my seizures stop after the second. But then most of my seizures a simple partial or focal seizures which are slight too. I know that people want to be sure that things are right before going on vacation or doing other things which is also what I do but if he is feeling good and he states the same then what you need to do is relax some and take your vacation. You can call his friend or a family member to check up on him or stay with him while you are gone. My mother is to be 84 and lives in San Diego so I call he a few times a week to make sure she is doing good and we talk about all kinds of things. On days I don't call her my sister and brothers call her so she is checked on daily and she also has friends that do go by and once or twice a week on wednesdays and thursdays. I call on those days later in the day. You can not plan around a seizure since you do not know when one will happen. So go about your business and do like you want. My family wanted to plan things around my seizures when I was younger and that was when we went fishing and did things that the whole family was involved in. I informed them that those trips helped everybody and that they should happen. I wanted to fish and rock hound and yes climb the mountains. They were small mountains but I enjoyed climbing them .I also found interestin rocks and arrowheads. The fish we caught was great in many meals . We went on those trips and the whol family and friends got involved. I hope this helps and he gets the assistance he needs and you enjoy your vacation Joe

Comments

There are several things that

Submitted by Anonymous on Thu, 2014-05-08 - 10:15

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