I have another question about my daughter with epilepsy
- Thread starter MyBabyGirlAbigailFaith
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Stacy
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Hello!
I have been through the sets of seizures too. The reason Abigail is a vegetable is that after a seizure, one has NO energy.... zero, zip, zilch, nada. My husband (Bern) has started to understand this and doesn't pressure me much anymore. The Topomax (while I was taking it) in addition to other drugs, made me feel and act like someone with Parkisonism. I couldn't even say my own name. It looked more like, "Hi. MY namE is StAcy."
Personally, I would get out of town. Those Dr.s aren't helping. Find some that will. I too have been through the Neuro saying, "...Just up her Dilantin levels". When that didn't help... "...Just up her Dilantin levels". Becoming vegetable... "just up her Dilantin levels." I finally took matters into my own hands and kept a journal... what I ate, when, how I felt, when I took meds and how much, when I had seizures, and what my #2 looked like". Ha Ha. Seriously, it helped. Try it. The big thing is stay away from sugars. We are here for support. Good luck.
I have been through the sets of seizures too. The reason Abigail is a vegetable is that after a seizure, one has NO energy.... zero, zip, zilch, nada. My husband (Bern) has started to understand this and doesn't pressure me much anymore. The Topomax (while I was taking it) in addition to other drugs, made me feel and act like someone with Parkisonism. I couldn't even say my own name. It looked more like, "Hi. MY namE is StAcy."
Personally, I would get out of town. Those Dr.s aren't helping. Find some that will. I too have been through the Neuro saying, "...Just up her Dilantin levels". When that didn't help... "...Just up her Dilantin levels". Becoming vegetable... "just up her Dilantin levels." I finally took matters into my own hands and kept a journal... what I ate, when, how I felt, when I took meds and how much, when I had seizures, and what my #2 looked like". Ha Ha. Seriously, it helped. Try it. The big thing is stay away from sugars. We are here for support. Good luck.
Jessica,
I want you to know that I have been praying so hard for Abigail Faith. As I mentioned in my PM, there is a great neuro in Nashville who treated me when I was first diagnosed as a teen. I know that would be a drive for you but I agree with Stacey. I would get out of town. You may not have to go as far as Nasville. Have you tried Knoxville?
When my middle son was born prematurely we were living in a small town in Texas and he had to transported to Dallas because it was a much bigger hospital with better facilities.
BTW, if you do go to Nashville (or maybe Knoxville, I don't know) you may be able to stay at The Ronald McDonald House. We stayed at the one in Dallas for 4 weeks when my middle son was born. Just a thought.
Love and prayers,
Blessed
Jevenile Myoclonic Epilepsy since 1982
25 mg. Zonegran
I want you to know that I have been praying so hard for Abigail Faith. As I mentioned in my PM, there is a great neuro in Nashville who treated me when I was first diagnosed as a teen. I know that would be a drive for you but I agree with Stacey. I would get out of town. You may not have to go as far as Nasville. Have you tried Knoxville?
When my middle son was born prematurely we were living in a small town in Texas and he had to transported to Dallas because it was a much bigger hospital with better facilities.
BTW, if you do go to Nashville (or maybe Knoxville, I don't know) you may be able to stay at The Ronald McDonald House. We stayed at the one in Dallas for 4 weeks when my middle son was born. Just a thought.
Love and prayers,
Blessed
Jevenile Myoclonic Epilepsy since 1982
25 mg. Zonegran
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Update on Abigail Faith
I Thank all of you guys for all of your support on my daughters epilepsy and I wanted to let you know that we have found the cause for the seizures b/c we have been in Childrens for a little over a week and then we were airlifted by medical jet to Le Bonhuer Childrens in Memphis b/c she failed 12 seizure meds. We have done every test under the sun and have found that she has cortical displasia in the right side of her brain. She is going to have grids put in tommorow to pinpoint the seizures (on her brain) then they will be left in for 3 days and then on friday they will be cutting out the part of the brain that has the problem. Her seizures got to where they were 5 minutes apart and nothing anyone could do would stop them. But I am so glad that we have answers now as before they could not tell us why nothing was working and why all of the meds were failing. Though I cannot get a straight answer from anyone on the Dilantin and if the effects of the "drunkness" is normal and why she cannot walk. She also got to much of it at East Tn childrens 2 weeks ago today and it put her into a coma b/c her levels were "Toxic". Does anyone know the dangers of to much dilantin? Also she is on valium and back on Trileptal b/c she no longer throws up with it. They had her on Depakote but then took her off of it for the surgery b/c it can cause problems with bleeding and she cannot be on it and have brain surgery. My big question is, has anyone heard of Dr. Clark @ Lebonuer Childrens? Is he a good neuro? And Dr. Ainhouse is doing the brain surgery. I cannot do a lot of research b/c we are 6 hours from home and I am using the parent resource room to talk to you guys. Any advice or prayers will be greatly appreciated..
Thank You, Jessica
I Thank all of you guys for all of your support on my daughters epilepsy and I wanted to let you know that we have found the cause for the seizures b/c we have been in Childrens for a little over a week and then we were airlifted by medical jet to Le Bonhuer Childrens in Memphis b/c she failed 12 seizure meds. We have done every test under the sun and have found that she has cortical displasia in the right side of her brain. She is going to have grids put in tommorow to pinpoint the seizures (on her brain) then they will be left in for 3 days and then on friday they will be cutting out the part of the brain that has the problem. Her seizures got to where they were 5 minutes apart and nothing anyone could do would stop them. But I am so glad that we have answers now as before they could not tell us why nothing was working and why all of the meds were failing. Though I cannot get a straight answer from anyone on the Dilantin and if the effects of the "drunkness" is normal and why she cannot walk. She also got to much of it at East Tn childrens 2 weeks ago today and it put her into a coma b/c her levels were "Toxic". Does anyone know the dangers of to much dilantin? Also she is on valium and back on Trileptal b/c she no longer throws up with it. They had her on Depakote but then took her off of it for the surgery b/c it can cause problems with bleeding and she cannot be on it and have brain surgery. My big question is, has anyone heard of Dr. Clark @ Lebonuer Childrens? Is he a good neuro? And Dr. Ainhouse is doing the brain surgery. I cannot do a lot of research b/c we are 6 hours from home and I am using the parent resource room to talk to you guys. Any advice or prayers will be greatly appreciated..
Thank You, Jessica
POSITIVEPERSON
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Wishing Abaigail Faith and her surgeons a succussful easy operation. When she wakes up may her szs be gone and her life return to normal. She and the drs will be in my prayers.
Riva
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Hi Jessica. I was wondering how Abigail was doing. Sorry to hear about the seizures and hospitalizations. 
Looks like brain surgery for focal cortical dysplasia is pretty successful at stopping seizures.
Yes, Dilantin can adversely affect balance and coordination.
((((((((((((hugs))))))))))))
Every time Stacy goes status and ends up in the ER/hospital, they pump her sky high with Cerebrex (liquid Dilantin). She usually requires a week to come down from the toxic levels.
She was never toxic enough to go into a coma, but she has been toxic before. She mostly complains of dizzyness and/or non-stop tingling sensations in the fingers and toes when toxic.
I don't know anything about them, but a quick Google search didn't turn up anything negative.
Looks like brain surgery for focal cortical dysplasia is pretty successful at stopping seizures.
Yes, Dilantin can adversely affect balance and coordination.
((((((((((((hugs))))))))))))
Every time Stacy goes status and ends up in the ER/hospital, they pump her sky high with Cerebrex (liquid Dilantin). She usually requires a week to come down from the toxic levels.
She was never toxic enough to go into a coma, but she has been toxic before. She mostly complains of dizzyness and/or non-stop tingling sensations in the fingers and toes when toxic.
I don't know anything about them, but a quick Google search didn't turn up anything negative.
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Dilantin can cause some unwanted side effects,
I also did some research from the other side of
the fence and like Bernard posted, I didn't see
any negative or bad reports either. So it all looks
like she's in good hands.
Will keep her in my prayers and thoughts!
Keep us posted!
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Update on Abi
She went into surgery to have the grids put in this morning around 7:00am and the surgeon calls me within an hour of eachother to update me and she had her first incision at 9:12am and they said that she was stable and doing fine. I will keep you updated, Thanks so much! -Jessica
She went into surgery to have the grids put in this morning around 7:00am and the surgeon calls me within an hour of eachother to update me and she had her first incision at 9:12am and they said that she was stable and doing fine. I will keep you updated, Thanks so much! -Jessica
:adore::angel::rose:
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Keeping Abigailfaith in my prayers!!!!!!!!!!!
Riva
Riva
Stacy
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I hope Abigail Faith is doing well. I am doing much better, but still have minor problems. It's much easier to deal with, and hopefully, I'll get better permanently. I'm very tired. I'm willing to do brain surgery at this point. I can't stand this. UHHHGGGGH. Kiss the baby for me.
Love, Stace
Love, Stace
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New update on Abigail
Her surgery went great! She is doing very well other than the fact that her personality has changed a bit. And she is really mad that her head got shaved. But that is a small price to pay seeing how she has had NO SEIZURES!!! I am so happy but I think that everything that has happened is finally sinking into my head and I have done alot of crying. She is still having a few "staring off into space" episodes but I am not sure they are seizures b/c they have not done another eeg since the surgery on friday. We got released from the hospital yesterday afternoon and we got home late last night. They had her on morphine this whole time and sent her home on tylenol w/ codiene. Does anyone know wether or not codeine will deal with this pain she is having b/c she is still complaining of it hurting. Her epilepsy dr. seems to think that she doesnt need anything stronger but I dont know about that. She has been put through so much that the last thing we want is for her to be in pain. Thanks to all of you that have prayed for her b/c god came through for us. There was a little boy down the hall that had the same surgery a week before abi's and he has yet to move or talk so this surgery seems to be a very dangerous surgery. Can everyone say a little prayer for him as well? She had some night terrors last night and I wondering where those are coming from. But if anyone wants an update before I give them please feel free to ask. Thanks for all of your support. -Jessica
Her surgery went great! She is doing very well other than the fact that her personality has changed a bit. And she is really mad that her head got shaved. But that is a small price to pay seeing how she has had NO SEIZURES!!! I am so happy but I think that everything that has happened is finally sinking into my head and I have done alot of crying. She is still having a few "staring off into space" episodes but I am not sure they are seizures b/c they have not done another eeg since the surgery on friday. We got released from the hospital yesterday afternoon and we got home late last night. They had her on morphine this whole time and sent her home on tylenol w/ codiene. Does anyone know wether or not codeine will deal with this pain she is having b/c she is still complaining of it hurting. Her epilepsy dr. seems to think that she doesnt need anything stronger but I dont know about that. She has been put through so much that the last thing we want is for her to be in pain. Thanks to all of you that have prayed for her b/c god came through for us. There was a little boy down the hall that had the same surgery a week before abi's and he has yet to move or talk so this surgery seems to be a very dangerous surgery. Can everyone say a little prayer for him as well? She had some night terrors last night and I wondering where those are coming from. But if anyone wants an update before I give them please feel free to ask. Thanks for all of your support. -Jessica
POSITIVEPERSON
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COngratualtions I am so happy her surgery went well.
I hope her pain subsides and she is sz free and med free for the rest of her life!!!!!!
Riva
I hope her pain subsides and she is sz free and med free for the rest of her life!!!!!!
Riva
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Thank you for the update on Abigail. It's wonderful she's doing so well! Call your doctor and INSIST on something stronger for her pain. Some doctors seem to think children don't feel pain??? or feel it as intensly as adults??? Ask that doc if he thinks Tylenol would be sufficiant if HE had the surgery instead of your little girl.
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Hi Jessica, thanks for the update. I'm relieved to hear that the surgery went well. :brock:
Abigail has been through a lot over the last few weeks. I imagine it was very stressful for her. The night terrors could be a way of dealing with the anxieties/stress.
Doctors are pretty careful about prescribing pain killers like codeine because they are very addictive.
Abigail has been through a lot over the last few weeks. I imagine it was very stressful for her. The night terrors could be a way of dealing with the anxieties/stress.
Doctors are pretty careful about prescribing pain killers like codeine because they are very addictive.