Hello,
I am the mother of a 15 year old girl with a variety of things happening. I have many questions, but first I will try to provide you with some history.
My daughter was diagnosed at age 8 with Asperger's Syndrome with a variety of comormid diagnosis, including general anxiety disorder, mood disorder, social anxiety, adhd & a bipolar rule out. With a variety of treatments, such as drug therapy, home based theraputic services & psych services by age 13 she was doing very well & could handle most situations by using her learnt skills.
When my daughter was about 13 yrs 7 mos she began reporting auditory hallucinations. We addressed this with her psych team but they did not seem ocerly concerned, stating that this is a fairly common phenomenon for children her age learning to deal with their own concious thought process & that as long as the voices were positive there was not a concern.
By the end of her 13th year dd became ill with a virus, which progressed into migraine headache, back & neck pain, reports of visual disturbances, feeling shaky & severe lethargy. Voices were also still being reported. After a month of these symptoms not abating after trying suggestings from pediatrician we ended up at er for iv meds to relieve migraine. An mri was scheduled. The mri did not show any deficiencies in the head, neck or back. Dd was referred to pt for further assessment & therapy. She recieved pt for about 3 months & her back & neck pain seemed to improve. She still suffered from headaches/migraines, but not debilitating like that first one.
Less than a month after pt ended dd began to become very disregulated. She was not sleeping well, suffering from paranoid delusions, complained of headache, feeoing shaky, head pain & numbness in the back left region of her head (at times tender to touch), visual disturbances, motor deficiencies (sudden dropping, not able to walk, not able to hold her body upright even when sitting) & she began reporting "mean" voices as well. We also moticed that she would stare & mot be responsive quite often. Looking back after what I have now learned I am thinking these may have been absence seizures. She was also highly anxious. Psych team prescribed klonopin in pm to help her sleep & as needed for anxiety. Symptoms lasted for about a week. She has very little memory of what happened. We believed this episode may have been brought on by stress related to starting a new summer program.
Once regulated she seemed to do okay until about 2 months later (just before a mew school year was to start) when she again became highly disregulated & dissassociative. Many of the above described symptoms were present. Voices were quite intense. She ended up in a children's psych ward for a week. Again, she has very little memory of what happened. We believed that the anxiety of beginning high school may have caused her to be disregulated.
About a month later, this past October, dd once again had a doozy of a migraine. This lasted for several weeks, even with medications if 800 mg motrin combined 10 mg compazine. Dd also began to become disregulated once again. She would report a variety of symptoms on an ongoing basis, from temporary loss of vision (10-30 seconds) to voices, pain or numbness in same head region & there were obvious motor disturbances with walking. We even witnessed aggresiveness, which we had not seen in years.
After weeks of no relief we went to er for iv meds. They initially seemed to help, but migraine slowly started to return within 12-18 hours. Within less than 48 hours of that er trip dd was being sent back to er after an incident at school where she dropped to the ground & was unresponsive for approximately 10 seconds. She also began showing signs of breathing distress. EMTs thought that she possibly had a tonic clonic seizure. That was the first time I had heard this term. Worthy to note, neurological assesments were done on both of these trips to the er. Topamax was prescribed as long as her psych team approved & her first eeg was scheduled.
Dd began on 25mg topomax, to be titrated up the next day after er. Within 5 days she began to decompensate rapidly. She had all of her usual symptoms, but now she was so out of it she appeared to not be there. She even needed help in the bathroom. By the next day I witnessed her 2nd drop attack. We stopped topamax.
Her eeg came back normal. We began seeing a neurologist in December.
She has been on a medical leave of absence since just before Thanksgiving, when the first drop attack happened at school. We had several episodes in December & the beginning of January that we believed were more panic attacks. Her psych team has mentioned anxiety related disaccociative disorder, conversion disorder & mon epileptic attack disorder as possible diagnosis. They are waiting for neuro to do a full investigation first.
At our appointment last week we were surprised to learn that the neurologist is questioning whether or not she is in fact suffering from panic attacks because a) panic attacks do not last as long as these episodes did b) her last eeg, from mid January, showed some minor abnormalities. Ironically, the eeg was done during a period of a few weeks of being symptom free.
Even more ironic was that the same evening of our appointment last week dd suffered what observers called a full blown tonic clonic seizure lasting 10 minutes (emt & security guard at mall) She was with her gparents & was rushed to er. Since that day she has had at least one seizure a day. The first few days they lasted over 10 minutes each. To my untrained eye I do not know if this episode is all one seizure or several seizures in a row. I habe noticed that she usually starts with a staring episode. She has also stated feeling shaky & sometimes also suddenly getting very hot all over. She does not remember what happens. She says she can sometimes hear voices that seem very far away during an episode. On the fourth day she had 3 seizures. Then on the next three days her seizures seem to he subtlely different. They are shorter & she appears more alert. Today is day 8 &, knock wood, no episodes yet today. On Monday we will be doing a 48 hour abulatory video eeg.
I apologize for the length of this. I have never joined a forum before. I am just very concerned. Last week I thought I was dealing with a child with severe psychological disturbances & now after this week I am now questioning everything.
I have several questions:
1) could all of my dd's symptoms be related to seizures?
2) do seizure disorders evolve & change over time? Because although similar symptoms have been occuring for a while how they now present are VERY different from initial onset.
3) is it possible to have a variety of diffent types of seizures happening with in a small space of time?
4) is it possible for seizures to cycle so that different types of seizures may occur, peak & get less severe ocer the course of a week?
I have many more questions, but I'll start with those. Thanks!
Sent from my SGH-T999L using Tapatalk
I am the mother of a 15 year old girl with a variety of things happening. I have many questions, but first I will try to provide you with some history.
My daughter was diagnosed at age 8 with Asperger's Syndrome with a variety of comormid diagnosis, including general anxiety disorder, mood disorder, social anxiety, adhd & a bipolar rule out. With a variety of treatments, such as drug therapy, home based theraputic services & psych services by age 13 she was doing very well & could handle most situations by using her learnt skills.
When my daughter was about 13 yrs 7 mos she began reporting auditory hallucinations. We addressed this with her psych team but they did not seem ocerly concerned, stating that this is a fairly common phenomenon for children her age learning to deal with their own concious thought process & that as long as the voices were positive there was not a concern.
By the end of her 13th year dd became ill with a virus, which progressed into migraine headache, back & neck pain, reports of visual disturbances, feeling shaky & severe lethargy. Voices were also still being reported. After a month of these symptoms not abating after trying suggestings from pediatrician we ended up at er for iv meds to relieve migraine. An mri was scheduled. The mri did not show any deficiencies in the head, neck or back. Dd was referred to pt for further assessment & therapy. She recieved pt for about 3 months & her back & neck pain seemed to improve. She still suffered from headaches/migraines, but not debilitating like that first one.
Less than a month after pt ended dd began to become very disregulated. She was not sleeping well, suffering from paranoid delusions, complained of headache, feeoing shaky, head pain & numbness in the back left region of her head (at times tender to touch), visual disturbances, motor deficiencies (sudden dropping, not able to walk, not able to hold her body upright even when sitting) & she began reporting "mean" voices as well. We also moticed that she would stare & mot be responsive quite often. Looking back after what I have now learned I am thinking these may have been absence seizures. She was also highly anxious. Psych team prescribed klonopin in pm to help her sleep & as needed for anxiety. Symptoms lasted for about a week. She has very little memory of what happened. We believed this episode may have been brought on by stress related to starting a new summer program.
Once regulated she seemed to do okay until about 2 months later (just before a mew school year was to start) when she again became highly disregulated & dissassociative. Many of the above described symptoms were present. Voices were quite intense. She ended up in a children's psych ward for a week. Again, she has very little memory of what happened. We believed that the anxiety of beginning high school may have caused her to be disregulated.
About a month later, this past October, dd once again had a doozy of a migraine. This lasted for several weeks, even with medications if 800 mg motrin combined 10 mg compazine. Dd also began to become disregulated once again. She would report a variety of symptoms on an ongoing basis, from temporary loss of vision (10-30 seconds) to voices, pain or numbness in same head region & there were obvious motor disturbances with walking. We even witnessed aggresiveness, which we had not seen in years.
After weeks of no relief we went to er for iv meds. They initially seemed to help, but migraine slowly started to return within 12-18 hours. Within less than 48 hours of that er trip dd was being sent back to er after an incident at school where she dropped to the ground & was unresponsive for approximately 10 seconds. She also began showing signs of breathing distress. EMTs thought that she possibly had a tonic clonic seizure. That was the first time I had heard this term. Worthy to note, neurological assesments were done on both of these trips to the er. Topamax was prescribed as long as her psych team approved & her first eeg was scheduled.
Dd began on 25mg topomax, to be titrated up the next day after er. Within 5 days she began to decompensate rapidly. She had all of her usual symptoms, but now she was so out of it she appeared to not be there. She even needed help in the bathroom. By the next day I witnessed her 2nd drop attack. We stopped topamax.
Her eeg came back normal. We began seeing a neurologist in December.
She has been on a medical leave of absence since just before Thanksgiving, when the first drop attack happened at school. We had several episodes in December & the beginning of January that we believed were more panic attacks. Her psych team has mentioned anxiety related disaccociative disorder, conversion disorder & mon epileptic attack disorder as possible diagnosis. They are waiting for neuro to do a full investigation first.
At our appointment last week we were surprised to learn that the neurologist is questioning whether or not she is in fact suffering from panic attacks because a) panic attacks do not last as long as these episodes did b) her last eeg, from mid January, showed some minor abnormalities. Ironically, the eeg was done during a period of a few weeks of being symptom free.
Even more ironic was that the same evening of our appointment last week dd suffered what observers called a full blown tonic clonic seizure lasting 10 minutes (emt & security guard at mall) She was with her gparents & was rushed to er. Since that day she has had at least one seizure a day. The first few days they lasted over 10 minutes each. To my untrained eye I do not know if this episode is all one seizure or several seizures in a row. I habe noticed that she usually starts with a staring episode. She has also stated feeling shaky & sometimes also suddenly getting very hot all over. She does not remember what happens. She says she can sometimes hear voices that seem very far away during an episode. On the fourth day she had 3 seizures. Then on the next three days her seizures seem to he subtlely different. They are shorter & she appears more alert. Today is day 8 &, knock wood, no episodes yet today. On Monday we will be doing a 48 hour abulatory video eeg.
I apologize for the length of this. I have never joined a forum before. I am just very concerned. Last week I thought I was dealing with a child with severe psychological disturbances & now after this week I am now questioning everything.
I have several questions:
1) could all of my dd's symptoms be related to seizures?
2) do seizure disorders evolve & change over time? Because although similar symptoms have been occuring for a while how they now present are VERY different from initial onset.
3) is it possible to have a variety of diffent types of seizures happening with in a small space of time?
4) is it possible for seizures to cycle so that different types of seizures may occur, peak & get less severe ocer the course of a week?
I have many more questions, but I'll start with those. Thanks!
Sent from my SGH-T999L using Tapatalk
Its post like this that remind me how good I actually have things. This situation really must be hell on you, but I can't think of a better place on the web than here for you right now.