Guest guest Posted July 9, 2004 Report Share Posted July 9, 2004 Hello, I am new at this group. I have a daughter who is 30 years old who has a clinical diagnosis of mitochondrial encephalopathy. She is developmentally delayed, has speech and motor problems and deteriorates cognitively, motor and behaviorally after viruses and infections. She periodically becomes psychotic, racing around the house, yelling, screaming, clapping her hands, and throwing things. She is on Seroquel, an antipsychotic, Ativan, for anxiety, Trazodone for sleep and Eskalith for mood swings and the mito cocktail. Lately, in spite of the medication, she will have one of these " spells " following her monthly period or after several days of activity. Does anyone have any experience with this? She also has had a stroke like episode and has intestinal dysmotility and is mentally retarded (mental age 4-5 years on a good day) Thanks, Shelby Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2004 Report Share Posted July 12, 2004 Lately, in spite of the medication, she will have one of these "spells" following her monthly period or after several days of activity. Shelby, Does she have seizures, or has she ever had an EEG? Seizures can manifest as behavioral symptoms/aggression. In women with epilepsy, sezures are common around or during menses, these are called catamenial seizures. If she does not remember these episodes, it could be seizures. I would discuss it with her neuro. Krisitne, Chelsea's mom(nonspecific mito) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2004 Report Share Posted July 12, 2004 None have ever shown anything except difused slowing whatever that means. Sometimes she will stare into space and it is difficult to get her to respond. Shelby, My daughter's EEG showed diffuse slowing as well. This was considered abnormal, as she was also showing spikes (tendencies for the neurons to fire when they are not supposed to). The spikes are seizures, at first, CHelsea was having very mild seizures with no loss of concioussness. She had a 2 catalysts that caused her epilepsy to worsen and now she has cinvulsive seizures with loss of consciousness. She also tends to stare at lights, and has always done this, which is possibly absence seizures. Are your daughter's staring spells very short? about 10 seconds? That is a typical absence seizure, the person will stare for a very short period, and then act as if nothing happened. If she is not having very many, she may not be aware of them. But if she is having a lot, she will start to notice blank spots in her day and may be very tired. Chelsea will be having another EEG later this month, I am curious to see how abnormal it is since she has had a difficult to control epilepsy. e, Chelsea's mom(nonspecific mito) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2004 Report Share Posted July 12, 2004 e, has had several EEGs. The pediatric neurologist she went to (before she got too old) thought several times she was having seizures but the EEG never picked them up. She has had 24 hour EEgs, sleep deprived EEGs, and one with nasal leads. None have ever shown anything except difused slowing whatever that means. Sometimes she will stare into space and it is difficult to get her to respond. Even then the EEG is normal. It is a little frustrating to say the least. Thanks for the idea. Shelby > In a message dated 7/9/2004 8:51:30 AM Eastern Standard Time, > whhawt@... writes: > Lately, in spite > of the medication, she will have one of these " spells " following her > monthly period or after several days of activity. > Shelby, Does she have seizures, or has she ever had an EEG? Seizures > can manifest as behavioral symptoms/aggression. In women with > epilepsy, sezures are common around or during menses, these are called > catamenial seizures. If she does not remember these episodes, it could > be seizures. I would discuss it with her neuro. > > Krisitne, Chelsea's mom(nonspecific mito) > > > Please contact mito-owner with any problems or > questions. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2004 Report Share Posted July 12, 2004 That is interesting. Our neurologist feels sure she is not having seizures. Her stares are infrequent. She is a little disoriented once you get her attention. I'll mention seizures as a possibility again when we see the neurologist. Thanks, Shelby > In a message dated 7/12/2004 2:21:17 PM Eastern Standard Time, > whhawt@... writes: > None have ever shown > anything except difused slowing whatever that means. Sometimes she > will stare into space and it is difficult to get her to respond. > Shelby, My daughter's EEG showed diffuse slowing as well. This was > considered abnormal, as she was also showing spikes (tendencies for > the neurons to fire when they are not supposed to). The spikes are > seizures, at first, CHelsea was having very mild seizures with no loss > of concioussness. She had a 2 catalysts that caused her epilepsy to > worsen and now she has cinvulsive seizures with loss of consciousness. > She also tends to stare at lights, and has always done this, which is > possibly absence seizures. Are your daughter's staring spells very > short? about 10 seconds? That is a typical absence seizure, the person > will stare for a very short period, and then act as if nothing > happened. If she is not having very many, she may not be aware of > them. But if she is having a lot, she will start to notice blank spots > in her day and may be very tired. > Chelsea will be having another EEG later this month, I am curious to > see how abnormal it is since she has had a difficult to control > epilepsy. > > e, Chelsea's mom(nonspecific mito) > > > Please contact mito-owner with any problems or > questions. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2004 Report Share Posted July 13, 2004 She is a little disoriented once you get her attention. Shelby, this is very common after a seizure. A 'small" seizure only affecting a small part of the brain will only cause short lived confusion/diorientation. After a "big" seizure, most people sleep or are very 'out of it' and probably irritable. My daughter will sleep anywhere from 10 to 60 min after a bad seizure and will be 'spacey' the rest of the day. e, Chelsea's mom(nonspecific mito) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2004 Report Share Posted July 13, 2004 The symptoms you spoke of sound just like absence seizures (petite mals) to me. Asenath has them but no very often any more due to a high dosage of Topamax. They do tend to last very short but can also come in clusters. We never caught seizures on EEG but did see the abnormal background plus lots of therapists and doctors have seen them as well as us. There was no question that she was having them especially with the brain issues she has. The docs are very surprised she doesn't have more seizures! She used to have the myoclonic jerking in her sleep too before the Topamax was increased as well as a few isolated jerking sessions during viruses assumed to be seizures. I think you should pursue it further as meds can really help her life be more normal. Before Asenath was treated she was so outof it and was hard to get her attention and carry on conversations with her. Best wishes on getting some info and help. Darla > > > In a message dated 7/12/2004 2:21:17 PM Eastern Standard Time, > > whhawt@r... writes: > > None have ever shown > > anything except difused slowing whatever that means. Sometimes she > > will stare into space and it is difficult to get her to respond. > > Shelby, My daughter's EEG showed diffuse slowing as well. This was > > considered abnormal, as she was also showing spikes (tendencies for > > the neurons to fire when they are not supposed to). The spikes are > > seizures, at first, CHelsea was having very mild seizures with no loss > > of concioussness. She had a 2 catalysts that caused her epilepsy to > > worsen and now she has cinvulsive seizures with loss of consciousness. > > She also tends to stare at lights, and has always done this, which is > > possibly absence seizures. Are your daughter's staring spells very > > short? about 10 seconds? That is a typical absence seizure, the person > > will stare for a very short period, and then act as if nothing > > happened. If she is not having very many, she may not be aware of > > them. But if she is having a lot, she will start to notice blank spots > > in her day and may be very tired. > > Chelsea will be having another EEG later this month, I am curious to > > see how abnormal it is since she has had a difficult to control > > epilepsy. > > > > e, Chelsea's mom(nonspecific mito) > > > > > > Please contact mito-owner with any problems or > > questions. > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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