New to Epilepsy (16-month baby)

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Hello! I'm the Foster Mother (hopefully, soon to be Adoptive Mother!) of a 16-month old boy with epilepsy. Seizures started as febrile seizures at 4 months when he was hospitalized for a kidney infection. Continued having febrile until he was 10 months, at which point he had a tonic clonic status elepticus for 40-minutes, refractory to medication. Was given Frisium in case of illness, and Diastat in case of a seizure more than 5 minutes. Was seizure-free for 3 months, then started having seizures again, was prescribed Frisium on a daily basis. That only worked for 1 month until seizures returned. Now we've just added on Keppra and we're hoping that it will work. We have very little family history on the little guy, the father is undeclared so nothing on that side. The neuro is planning on doing genetic testing to see if anything is there, and we're waiting for an MRI. To say the least, we are very concerned about him, but also are very hopeful that this illness will be well controlled with medications. In any case, I'm happy to have found this forum and am looking forward to conversing with you!

Comments

The forum will help and you

Submitted by just_joe on Sun, 2018-09-09 - 14:41

The forum will help and you will get answers from parents. Some with pertinent info. I am not the parent of a kid but I am one of those that has epilepsy. There are many different medications out there that treat and control ones seizures. I have personally used over 20 different medications or combinations of medications and yes they worked well. However Keppra has become one of the go to medications for seizure control. I have used it for a little over 15 years. Taking it alone reduced the number of seizures I was having.. I was in drug study for a new medication and started to have fw more seizures s couple of months after that study ended. I was Docs test patient for the generic Keppra and was using it when I stated have more seizures so I thought it might have been the new generic. We set up a visit and Do knew I did research and he expected to see my information. After going over the info he excused himself for a few minutes and came back in and sat down. Before letting me say anything he came out and said it was not the generic. He said it was not the generic because in the test study I had been taking the real medication. He then informed me that all we had to do was try with a medication to add to my Keppra which we did. Now that brought the seizures down to one every 5-14 days. It also shortened the time in those seizures, They used to be 2-8 minutes in length and were now seconds in length. The postictal time (time period it takes for the brain and body to get back to normal) was shortened from 15-48 minutes and at times longer was also in the few seconds period. Today I can have a seizure and unless you know exactly what to look for you wouldn't know I had one. So what ever you do for this child you are hoping the mother to do keep a god relationship with them. I have gotten as much and at times more done in phone calls then in visits. They all have assistants My neurologist that just retired was a doctors assistant and he was answering some of my questions back in the mid 1980'sI hope this helps and he gets the assistance he needs and you become his mother.You might want to research this site since it does have a lot of information on it that helps with all kinds of questions. I would get the My Epilepsy Diary which is on most of the sites pages on the left side of the page. It cn help keep track of his meds and their being taken. Not only epilepsy meds but all meds and doctors can be brought up. Note the seizures and the neurologists can bring the info up if you allow them to. They can look at the graphs and other info which might help with meds changes or procedures that may helpJoe

The forum will help and you will get answers from parents. Some with pertinent info. I am not the parent of a kid but I am one of those that has epilepsy. There are many different medications out there that treat and control ones seizures. I have personally used over 20 different medications or combinations of medications and yes they worked well. However Keppra has become one of the go to medications for seizure control. I have used it for a little over 15 years. Taking it alone reduced the number of seizures I was having.. I was in  drug study for a new medication and started to have  fw more seizures s couple of months after that study ended. I was Docs test patient for the generic Keppra and was using it when I stated have more seizures so I thought it might have been the new generic. We set up a visit and Do knew I did research and he expected to see my information. After going over the info he excused himself for a few minutes and came back in and sat down. Before letting me say anything he came out and said it was not the generic. He said it was not the generic because in the test study I had been taking the real medication. He then informed me that all we had to do was try with a medication to add to my Keppra which we did. Now that brought the seizures down to one every 5-14 days. It also shortened the time in those seizures, They used to be 2-8 minutes in length and were now seconds in length. The postictal time (time period it takes for the brain and body to get back to normal) was shortened from 15-48 minutes and at times longer was also in the few seconds period. Today I can have a seizure and unless you know exactly what to look for you wouldn't know I had one. So what ever you do for this child you are hoping the mother to do keep a god relationship with them. I have gotten as much and at times more done in phone calls then in visits. They all have assistants My neurologist that just retired was a doctors assistant and he was answering some of my questions back in the mid 1980'sI hope this helps and he gets the assistance he needs and you become his mother.You might want to research this site since it does have a lot of information on it that helps with all kinds of questions. I would get the My Epilepsy Diary which is on most of the sites pages on the left side of the page. It cn help keep track of his meds and their being taken. Not only epilepsy meds but all meds and doctors can be brought up. Note the seizures and the neurologists can bring the info up if you allow them to. They can look at the graphs and other info which might help with meds changes or procedures that may helpJoe

The forum will help and you will get answers from parents. Some with pertinent info. I am not the parent of a kid but I am one of those that has epilepsy. There are many different medications out there that treat and control ones seizures. I have personally used over 20 different medications or combinations of medications and yes they worked well. However Keppra has become one of the go to medications for seizure control. I have used it for a little over 15 years. Taking it alone reduced the number of seizures I was having.. I was in drug study for a new medication and started to have fw more seizures s couple of months after that study ended. I was Docs test patient for the generic Keppra and was using it when I stated have more seizures so I thought it might have been the new generic. We set up a visit and Do knew I did research and he expected to see my information. After going over the info he excused himself for a few minutes and came back in and sat down. Before letting me say anything he came out and said it was not the generic. He said it was not the generic because in the test study I had been taking the real medication. He then informed me that all we had to do was try with a medication to add to my Keppra which we did. Now that brought the seizures down to one every 5-14 days. It also shortened the time in those seizures, They used to be 2-8 minutes in length and were now seconds in length. The postictal time (time period it takes for the brain and body to get back to normal) was shortened from 15-48 minutes and at times longer was also in the few seconds period. Today I can have a seizure and unless you know exactly what to look for you wouldn't know I had one. So what ever you do for this child you are hoping the mother to do keep a god relationship with them. I have gotten as much and at times more done in phone calls then in visits. They all have assistants My neurologist that just retired was a doctors assistant and he was answering some of my questions back in the mid 1980'sI hope this helps and he gets the assistance he needs and you become his mother.You might want to research this site since it does have a lot of information on it that helps with all kinds of questions. I would get the My Epilepsy Diary which is on most of the sites pages on the left side of the page. It cn help keep track of his meds and their being taken. Not only epilepsy meds but all meds and doctors can be brought up. Note the seizures and the neurologists can bring the info up if you allow them to. They can look at the graphs and other info which might help with meds changes or procedures that may helpJoe

New to Epilepsy (16-month baby)

Comments

The forum will help and you

Submitted by just_joe on Sun, 2018-09-09 - 14:41

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