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6 year old with Strange symptoms
Hello,
My daughter is 6 years old. About a month ago she "passed out" in a store with some family members (she was standing in an aisle, started crying and fell to the floor, she woke up and was confused and did not recognize anyone, she stayed that way for about 15-30 minutes). She was not brought to the hospital that night (I was not informed until late that night), so I took her to her family physician the next day. He ordered some blood work (all normal) and a consult to a pediatric neurologist because my mother has a history of epilepsy. I made the appointment which was a few weeks away.
About a week and a half later, my daughter had an episode at home (she was eating a snack, got up and said she felt like she did when she passed out, we laid her down, she began screaming in pain that she had a headache, we calmed her down, she got up and complained that she had pain shooting down her right arm and then down her right leg, I called the doctor who told me to take her to the ER, the entire 45 minute drive there she screamed in pain, now all over her body, was hallucinating, and would not speak to me for a few minutes and then begin screaming again, when we arrived at the ER, she was sleepy and confused, weak, this lasted about 1 hour, the total event about 2-3 hours). She was admitted to the hospital for three days, all of her bloodwork was normal, Head CT, EKG, MRI, CXR were normal. Her EEG showed idiopathic generalized seizures. The doctor told me that the EEG had very significant findings. She also had an event in the hospital where she suddenly had a episode of weakness (lasting about 15-30 minutes).
We were sent home with Keppra 250 mg PO BID and B6 25 mg PO daily, and also Diastat 7.5 mg PR. I followed up with the pediatric neurologist the next week and he did not answer any of my questions. I feel very uneasy, and there are not any other pediatric neurologists in our area. She has had one large episode similar to the one that brought us to the ER the first time. We gave her Diastat, which did nothing, and ended up bringing her to the ER again. We are in a holding pattern now, the doctor is checking her Keppra levels. I am concerned because she will be starting back at school soon and we cannot tell when or if she is having seizures.
Thank you.
My daughter is 6 years old. About a month ago she "passed out" in a store with some family members (she was standing in an aisle, started crying and fell to the floor, she woke up and was confused and did not recognize anyone, she stayed that way for about 15-30 minutes). She was not brought to the hospital that night (I was not informed until late that night), so I took her to her family physician the next day. He ordered some blood work (all normal) and a consult to a pediatric neurologist because my mother has a history of epilepsy. I made the appointment which was a few weeks away.
About a week and a half later, my daughter had an episode at home (she was eating a snack, got up and said she felt like she did when she passed out, we laid her down, she began screaming in pain that she had a headache, we calmed her down, she got up and complained that she had pain shooting down her right arm and then down her right leg, I called the doctor who told me to take her to the ER, the entire 45 minute drive there she screamed in pain, now all over her body, was hallucinating, and would not speak to me for a few minutes and then begin screaming again, when we arrived at the ER, she was sleepy and confused, weak, this lasted about 1 hour, the total event about 2-3 hours). She was admitted to the hospital for three days, all of her bloodwork was normal, Head CT, EKG, MRI, CXR were normal. Her EEG showed idiopathic generalized seizures. The doctor told me that the EEG had very significant findings. She also had an event in the hospital where she suddenly had a episode of weakness (lasting about 15-30 minutes).
We were sent home with Keppra 250 mg PO BID and B6 25 mg PO daily, and also Diastat 7.5 mg PR. I followed up with the pediatric neurologist the next week and he did not answer any of my questions. I feel very uneasy, and there are not any other pediatric neurologists in our area. She has had one large episode similar to the one that brought us to the ER the first time. We gave her Diastat, which did nothing, and ended up bringing her to the ER again. We are in a holding pattern now, the doctor is checking her Keppra levels. I am concerned because she will be starting back at school soon and we cannot tell when or if she is having seizures.
Thank you.
in all likeliness he was correct in his diagnosis. but keppra may not necessarily be effective in treating the seizures. a lot of the time, patients are given several anti-epileptic drugs in a sort of trial-and-error fashion before finding a combination that is effective at stopping their seizures. it may be best to go to a epileptologist (researcher and neurologist who specializes in epilepsy) at a major academic hospital in your area.
in particular, ask the doctor if her EEG showed signs of benign epilepsy of childhood with centrotemporal spikes. the prognosis for this form of epilepsy is very good, and the seizures usually stop before age 16.
in particular, ask the doctor if her EEG showed signs of benign epilepsy of childhood with centrotemporal spikes. the prognosis for this form of epilepsy is very good, and the seizures usually stop before age 16.
Dear Concerned,
I believe ggreg is correct and as far as school as an educator, here is my advise, speak with the teachers, nurse and principle. Become as proactive and self educated on the topic as you can, so you can help and teach yourself, family, daughter and daughter's peers/classmates etc... I do know from a former student who had absent seizures he was on a liquid form of topamx .Perhaps if you find the medicine your daughter is on isn't working, maybe you can ask to have it changed. Be sure your daughter is actucally getting the medicine correctly. Sometimes children do not swallow pills like capsules correctly and or spit it out. If this is the case and I am sure its not, but to be sure, make her part of the task allow her to help you with giving herself the medicine, teach her not to be afarid of of what she has and if she has problems with the medicine always reinforce that it is to help her. You can mix meds in yougart or jelly, fun stuff! (Capsules twist them open pour beads into whatever ike yougart , jelly etc... and try giving that way)
As far as telling if and when she will have a seizure, ask her, does she get a sensation of anything like a ringing in the ear, a buzzing, tingly feelings/numbness anywhere, sounds, smells, see colors etc... prior to her seizure? These are called aureas and they usually come one prior to a seizure. Not everyone gets them but, it maybe helpful if she can identify a funny feeing or weird feeling prior to as to this way you or she may know a seizure may be coming on. It can then take place within a few minutes up to an hour later.
Also be honest with the Neurologist and tell him / her you feel uneasy and you feel things were not explained to you! Follow the person aboves advice and just really become pro active! Best wishes , hang in there I know its tough, but you and your family will get through this!
I believe ggreg is correct and as far as school as an educator, here is my advise, speak with the teachers, nurse and principle. Become as proactive and self educated on the topic as you can, so you can help and teach yourself, family, daughter and daughter's peers/classmates etc... I do know from a former student who had absent seizures he was on a liquid form of topamx .Perhaps if you find the medicine your daughter is on isn't working, maybe you can ask to have it changed. Be sure your daughter is actucally getting the medicine correctly. Sometimes children do not swallow pills like capsules correctly and or spit it out. If this is the case and I am sure its not, but to be sure, make her part of the task allow her to help you with giving herself the medicine, teach her not to be afarid of of what she has and if she has problems with the medicine always reinforce that it is to help her. You can mix meds in yougart or jelly, fun stuff! (Capsules twist them open pour beads into whatever ike yougart , jelly etc... and try giving that way)
As far as telling if and when she will have a seizure, ask her, does she get a sensation of anything like a ringing in the ear, a buzzing, tingly feelings/numbness anywhere, sounds, smells, see colors etc... prior to her seizure? These are called aureas and they usually come one prior to a seizure. Not everyone gets them but, it maybe helpful if she can identify a funny feeing or weird feeling prior to as to this way you or she may know a seizure may be coming on. It can then take place within a few minutes up to an hour later.
Also be honest with the Neurologist and tell him / her you feel uneasy and you feel things were not explained to you! Follow the person aboves advice and just really become pro active! Best wishes , hang in there I know its tough, but you and your family will get through this!
Dear Concerned,
Since the pediatric neurologist did not know what to say or do, obviously you will need to locate another doctor who specializes in epilepsy, since the EEG showed your daughter was having seizures. I think you should obtain a copy of the complete report from the hospital that did that EEG. The below link will take you to a webpage that is most helpful for parents trying to get a handle on epilepsy, including what to do about school. The page also has a tab you can select that will give you a list of physicians who specialize in epilepsy.
www.epilepsyfoundation.org
I hope this will help you, and by seeking new help, at the very least they can confirm epilepsy or tell you more about what else might be causing this distressing turn of events in your daughter's life.
Since the pediatric neurologist did not know what to say or do, obviously you will need to locate another doctor who specializes in epilepsy, since the EEG showed your daughter was having seizures. I think you should obtain a copy of the complete report from the hospital that did that EEG. The below link will take you to a webpage that is most helpful for parents trying to get a handle on epilepsy, including what to do about school. The page also has a tab you can select that will give you a list of physicians who specialize in epilepsy.
www.epilepsyfoundation.org
I hope this will help you, and by seeking new help, at the very least they can confirm epilepsy or tell you more about what else might be causing this distressing turn of events in your daughter's life.
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