Hi all. My 16 yo daughter has been sick for almost three years with CRPS, or RSD Reflex Sympathetic Dystrophy. It is a very painful neuropathic pain condition with no cure and no proven treatments. She has been in severe pain for a while. She also has EDS a rare connective tissue disorder causing hypermobile joints. Thus, I think doctors have been quick to label her seizures as psychogenic. They are demanding she undergo neuro-psych testing before even calling these events seizures. Right now they are "movements". She has been in the hospital twice this month and the nurses all tell me, these are real....keep looking for answers. My daughter has agreed to the neuro psych testing because she says she just wants to shut everyone up and prove them wrong. I'm upset that she has to go through all this again, she had these tests done a year ago and she was proven perfectly normal! She is in pain 24/7 intensive teting like this is very hard on her.
Here is what has happened so far. We went to ER for left sided weakness and increased pain, chest pain, left arm, jaw. While in hospital seizures started. She has a history of unexplained falls and concussions. She also has a history of abnormal EEG...slowing in right posterior temporal lobe. Most recently she ended up in ICU because seizures lasted for over four hours. Each one lasting 30-60 seconds, 1-2 minute "break", then they would start again. She was given 8mg of ativan. Seizures slowed down, but still had one every 5 minutes. They pinched her finger, breaking skin, and tried sternum rub. She did not awaken. She had 24 hour vidoe EEG during the episodes that were said to be "normal". Her seizures are all basically the same:
This is what hers are like: usually preceded by a strong chemical smell, sometimes a funny feeling in her stomach. Many start when she is sleeping though. Her left hand, always raises, elbow bent, hand towards her face or chest, hand claws up, she mostly hits at her face repetitively with a clawed hand, sometimes her chest, her body is very rigid especially her left arm and hand. Her right arm remains completely relaxed and pliable. Sometimes she arches her back or neck. Sometimes saliva foams out her mouth. it seems like breathing is very labored or forced. Eyes roll back in her head and eyelids remain open. She sometimes loses bladder control. Her left leg muscles are very tense and rigid with some shaking. When the episode is over she slowly relaxes, her eyes are glassy, she is confused and can't speak for a moment. when asked her name it takes a while to get an answer. She finally comes to and can answer but speach is difficult for about a minute. She is then VERY tired and lays there for a while. Recently after several 30 minute episodes she is unable to speak for 30-45 minutes following. The episodes always involve her left side, sometimes when she awakes she has a right sided headache.
I have a feeling her prolactin levels were normal but unfortunately I did not think to ask before they discharged us. I did ask the neuro about the possibility that the seizures were coming from deep in the brain, thus the EEG does not pick them up. He says this is not possible that the eeg would at least show slight abnormality.
This time we were at least discharged with clonazepam as daily med and to be used if seizures don't stop. Neuro will follow up in 3 weeks. We already had an appointment with a mitochondrial disease specialist in two weeks. Maybe the seizures are related to that? Either way I am saddened because this is not the first time things have been blamed on psych. It just makes everything a battle. Yes, my daughter is very sick and has been for a while but believe me no 16 yo wants to spend her life sick at home with her mom!! These are REAL symptoms.
Here is what has happened so far. We went to ER for left sided weakness and increased pain, chest pain, left arm, jaw. While in hospital seizures started. She has a history of unexplained falls and concussions. She also has a history of abnormal EEG...slowing in right posterior temporal lobe. Most recently she ended up in ICU because seizures lasted for over four hours. Each one lasting 30-60 seconds, 1-2 minute "break", then they would start again. She was given 8mg of ativan. Seizures slowed down, but still had one every 5 minutes. They pinched her finger, breaking skin, and tried sternum rub. She did not awaken. She had 24 hour vidoe EEG during the episodes that were said to be "normal". Her seizures are all basically the same:
This is what hers are like: usually preceded by a strong chemical smell, sometimes a funny feeling in her stomach. Many start when she is sleeping though. Her left hand, always raises, elbow bent, hand towards her face or chest, hand claws up, she mostly hits at her face repetitively with a clawed hand, sometimes her chest, her body is very rigid especially her left arm and hand. Her right arm remains completely relaxed and pliable. Sometimes she arches her back or neck. Sometimes saliva foams out her mouth. it seems like breathing is very labored or forced. Eyes roll back in her head and eyelids remain open. She sometimes loses bladder control. Her left leg muscles are very tense and rigid with some shaking. When the episode is over she slowly relaxes, her eyes are glassy, she is confused and can't speak for a moment. when asked her name it takes a while to get an answer. She finally comes to and can answer but speach is difficult for about a minute. She is then VERY tired and lays there for a while. Recently after several 30 minute episodes she is unable to speak for 30-45 minutes following. The episodes always involve her left side, sometimes when she awakes she has a right sided headache.
I have a feeling her prolactin levels were normal but unfortunately I did not think to ask before they discharged us. I did ask the neuro about the possibility that the seizures were coming from deep in the brain, thus the EEG does not pick them up. He says this is not possible that the eeg would at least show slight abnormality.
This time we were at least discharged with clonazepam as daily med and to be used if seizures don't stop. Neuro will follow up in 3 weeks. We already had an appointment with a mitochondrial disease specialist in two weeks. Maybe the seizures are related to that? Either way I am saddened because this is not the first time things have been blamed on psych. It just makes everything a battle. Yes, my daughter is very sick and has been for a while but believe me no 16 yo wants to spend her life sick at home with her mom!! These are REAL symptoms.
