Mom with real PTSD after seeing childs first seizure

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Hi, My 14 y.o. daughter passed out on the beach this past Sunday and was unresponsive. One minute she was standing and the next I turn to speak to her and she was on the ground unresponsive. When I went to her calling her name she was in full seizure for the first time ever. It's called Generalized tonic-clonic seizure or Grand Mal Seizure. She was not responding and when the ambulance arrived and she became a bit responsive she couldn't see or remember anything! Not me, not the date, being on the beach or even her own name! We are in the process of appointments and testing but I am totally freaking out and feel like I'm losing it when I'm trying and needing to be the strongest! She's ok for now but she's going through anxiety because she cannot remember what happened. She got vision back after 10-15 minutes and came to completely about an hour and 20 minutes later. She was in what the doctor said was a postictal state. I need help because I'm in denial, depression, horrified and I cannot get my mind to stop recapping the moment and it's really effecting me. Any support advice is greatly appreciated.

Comments

Hey there! I'm so sorry for

Submitted by TJP1214 on Fri, 2017-08-11 - 18:19

Hey there! I'm so sorry for the stress you are going through, wanted to give you a virtual hug first ((((((((((HUG))))))))))))))))). As a mom with generalized anxiety disorder-- who also happens to have a child with epilepsy--I get it 100%. And yes, it is definitely "real" PTSD, but the good news is it will get better and you will eventually feel like yourself again. My son is 16 now but has had epilepsy since the age of 5. His neurological history is long and complex, but the gist of it is that he is a completely normal child (academically gifted to boot)and was usually very well controlled with medication, and there were years in between seizures. So I would go through the long process of recovering from the shock of witnessing his seizures only to have to start from ground zero again when the next cluster would occur. He never went more than 3 years in between, and once puberty hit all hell broke loose as his medication needed to be increased due to his rapid growth. Then, last October at the age of 15 he had a life threatening side effect from his epilepsy medication, causing his blood sodium to drop. He had 3 seizures in one day, and had to rapidly transition to a new medication. The first change was not successful and there were many breakthrough seizures. He's been ramping up on Lamictal since April, It's been 17 weeks since the last seizure and for that I am so grateful. I won't lie--the breakthrough seizures beat me up and set me back big time as far as my anxiety. But I'm not going at it alone. I have a psychiatrist, and in the days surrounding his seizures I need to take anti-anxiety medications (Klonipin) to get me through. The adrenaline rushes from witnessing seizures really do create a PTSD "environment" in the brain of us already stressed mothers just wishing we could help our kids. Klonipin (or similar drugs like Xanax or Valium) help to neutralize that "fight or flight" reaction that adrenaline rushes seem to perpetuate. The controversy around these anti-anxiety medications all involve cases of people who abuse the medication. I take Klonipin only when needed, for a day or 2 after my son has seizures. It doesn't make me feel "high" or good in any way, it simply helps me cope without jumping at every sound or movement. When taken only when needed it is not addictive in the least (I had to add that disclosure because I know there is a lot of prescription drug abuse going on these days which can give a bad name to medications that are incredibly effective and useful when taken AS DIRECTED and not abused for recreation purposes)!So in essence my message is this: * Witnessing your child having a seizure is scary and traumatizing as hell.* Almost everyone witnessing their child having an unprovoked seizure thinks their child is dying. * Most seizures look a lot scarier than what they really are: a surge of electrical activity in the brain that usually does no damage (unless prolonged). * You are not alone. Millions of mothers all over the globe have felt the same fears and have overcome them once they see that their child can live a full live with epilepsy. * And finally: Take care of yourself. Get help from a psychiatrist if your anxiety is overwhelming you. Helping yourself first is crucial if you want to help your daughter; Think of that old story with the plane crash: In order to be of any help to others in an emergency you have to put your own oxygen mask on first! I hope this helps, and if you want to talk privately my email is sugarmyst@gmail.com. Good luck and Godspeed to you and your daughter!

Hey there!  I'm so sorry for the stress you are going through, wanted to give you a virtual hug first ((((((((((HUG))))))))))))))))).  As a mom with generalized anxiety disorder-- who also happens to have a child with epilepsy--I get it 100%.  And yes, it is definitely "real" PTSD, but the good news is it will get better and you will eventually feel like yourself again. My son is 16 now but has had epilepsy since the age of 5.  His neurological history is long and complex, but the gist of it is that he is a completely normal child (academically gifted to boot)and was usually very well controlled with medication, and there were years in between seizures.  So I would go through the long process of recovering from the shock of witnessing his seizures only to have to start from ground zero again when the next cluster would occur.  He never went more than 3 years in between, and once puberty hit all hell broke loose as his medication needed to be increased due to his rapid growth.  Then, last October at the age of 15 he had a life threatening side effect from his epilepsy medication, causing his blood sodium to drop. He had 3 seizures in one day, and had to rapidly transition to a new medication.  The first change was not successful and there were many breakthrough seizures.  He's been ramping up on Lamictal since April, It's been 17 weeks since the last seizure and for that I am so grateful. I won't lie--the breakthrough seizures beat me up and set me back big time as far as my anxiety.  But I'm not going at it alone.  I have a psychiatrist, and in the days surrounding his seizures I need to take anti-anxiety medications (Klonipin) to get me through.  The adrenaline rushes from witnessing seizures really do create a PTSD "environment" in the brain of us already stressed mothers just wishing we could help our kids.  Klonipin (or similar drugs like Xanax or Valium) help to neutralize that "fight or flight" reaction that adrenaline rushes seem to perpetuate.  The controversy around these anti-anxiety medications all involve cases of people who abuse the medication.  I take Klonipin only when needed, for a day or 2 after my son has seizures.  It doesn't make me feel "high" or good in any way, it simply helps me cope without jumping at every sound or movement.  When taken only when needed it is not addictive in the least (I had to add that disclosure because I know there is a lot of prescription drug abuse going on these days which can give a bad name to medications that are incredibly effective and useful when taken AS DIRECTED and not abused for recreation purposes)!So in essence my message is this:  * Witnessing your child having a seizure is scary and traumatizing as hell.* Almost everyone witnessing their child having an unprovoked seizure thinks their child is dying. * Most seizures look a lot scarier than what they really are: a surge of electrical activity in the brain that usually does no damage (unless prolonged). * You are not alone. Millions of mothers all over the globe have felt the same fears and have overcome them once they see that their child can live a full live with epilepsy. * And finally: Take care of yourself. Get help from a psychiatrist if your anxiety is overwhelming you.  Helping yourself first is crucial if you want to help your daughter;  Think of that old story with the plane crash: In order to be of any help to others in an emergency you have to put your own oxygen mask on first!   I hope this helps, and if you want to talk privately my email is sugarmyst@gmail.com.  Good luck and Godspeed to you and your daughter!  

Hey there! I'm so sorry for the stress you are going through, wanted to give you a virtual hug first ((((((((((HUG))))))))))))))))). As a mom with generalized anxiety disorder-- who also happens to have a child with epilepsy--I get it 100%. And yes, it is definitely "real" PTSD, but the good news is it will get better and you will eventually feel like yourself again. My son is 16 now but has had epilepsy since the age of 5. His neurological history is long and complex, but the gist of it is that he is a completely normal child (academically gifted to boot)and was usually very well controlled with medication, and there were years in between seizures. So I would go through the long process of recovering from the shock of witnessing his seizures only to have to start from ground zero again when the next cluster would occur. He never went more than 3 years in between, and once puberty hit all hell broke loose as his medication needed to be increased due to his rapid growth. Then, last October at the age of 15 he had a life threatening side effect from his epilepsy medication, causing his blood sodium to drop. He had 3 seizures in one day, and had to rapidly transition to a new medication. The first change was not successful and there were many breakthrough seizures. He's been ramping up on Lamictal since April, It's been 17 weeks since the last seizure and for that I am so grateful. I won't lie--the breakthrough seizures beat me up and set me back big time as far as my anxiety. But I'm not going at it alone. I have a psychiatrist, and in the days surrounding his seizures I need to take anti-anxiety medications (Klonipin) to get me through. The adrenaline rushes from witnessing seizures really do create a PTSD "environment" in the brain of us already stressed mothers just wishing we could help our kids. Klonipin (or similar drugs like Xanax or Valium) help to neutralize that "fight or flight" reaction that adrenaline rushes seem to perpetuate. The controversy around these anti-anxiety medications all involve cases of people who abuse the medication. I take Klonipin only when needed, for a day or 2 after my son has seizures. It doesn't make me feel "high" or good in any way, it simply helps me cope without jumping at every sound or movement. When taken only when needed it is not addictive in the least (I had to add that disclosure because I know there is a lot of prescription drug abuse going on these days which can give a bad name to medications that are incredibly effective and useful when taken AS DIRECTED and not abused for recreation purposes)!So in essence my message is this: * Witnessing your child having a seizure is scary and traumatizing as hell.* Almost everyone witnessing their child having an unprovoked seizure thinks their child is dying. * Most seizures look a lot scarier than what they really are: a surge of electrical activity in the brain that usually does no damage (unless prolonged). * You are not alone. Millions of mothers all over the globe have felt the same fears and have overcome them once they see that their child can live a full live with epilepsy. * And finally: Take care of yourself. Get help from a psychiatrist if your anxiety is overwhelming you. Helping yourself first is crucial if you want to help your daughter; Think of that old story with the plane crash: In order to be of any help to others in an emergency you have to put your own oxygen mask on first! I hope this helps, and if you want to talk privately my email is sugarmyst@gmail.com. Good luck and Godspeed to you and your daughter!

I just want to let you know

Submitted by April potter on Wed, 2018-03-21 - 14:47

I just want to let you know that you are not alone. I am tuned into my husband and I wake up as soon as his breathing changes right before he has a seizure. I have nightmares, I wake up panicked all the time. It is so hard, I understand.