Hi, everyone. Please, please read even though this is long with history that might apply.
I'm the *very* concerned mother of an almost 21-year-old daughter who's highly suspected of having temporal lobe seizures (complex partial).
Her history of the past two years has been amazing to say the least and this is just another scary part of a mind-bogging journey.
Two years ago this month she became very ill but seemed to do better. On Christmas Eve (and just after her 19th b'day) she found out she was pregnant. She was extremely ill, physically and mentally. We found out that she had Grave's Disease. It was very difficult to control and the pregnancy was a huge complication. Somehow, after out-of-control hyperthyroidism, three bouts of hepatitis due to the hyperthyroidism, etc., she delivered a very healthy baby four weeks early.
In January of this year she had her thyroid removed and did well. It was a race, though, to get it done. She began with postpartum thyroidtoxicosis and the meds weren't helping. She had to go on SSKI (potassium iodide drops), and the race was on to find a surgeon to fit her into his schedule in the small window of time we bought on the meds. With the removal of the thyroid, we thought it was over except for managing meds and possibly some minor mood swings, possible minor issues association with hypothyroidism.
She also had the goiter and grave's opthalmapathy. No dr's ever got it...no even her opthamologist. See, she's had glasses since just before her second b'day...vision being extremely poor.
I look into history, and she was always this energetic, more than usual, emotional ball...mostly delightful. I can see her first clear period of hyperthyroidism at about 16 years of age...just after her grandmother's unexpected death. Of course, we didn't know what it was. She had a few more of these periods, along with the issues that we now recognize as her having had the liver involvement (extreme itching with blood pooling under the skin where she'd scratch). So the dx. and everything that came along with it answered a lot of questions for us.
I feel this history important as it might link somehow to the temporal lobe seizures somehow?
Since about the same time as her first hyperthyroid period, she began to have these weird "thoughts/memories and stomach ache". She didn't tell me until she was about 18 and just thought they were weird. I did too. When we got the Grave's dx., I figured it somehow fit in there, but never could find out how.
Since I've had to be so involved in her care and her child's care, I've witnessed these stomach ache, weird periods a couple of times.
Of course, all she reported was the weird thought or vision and stomach ache because that's all she remembers! For instance, with this last one (just this past Thursday), that's all she remembered.
We were sitting there eating a Hardee's biscuit and gravy and we were talking. She didn't answer me, so I repeated and looked at her. She just held up one finger and very robotically said, "Shhh". She was very soft and robotic...almost as if calmly shushing a child. Immediately following that she put her hand to her chest and began to swallow...hard...as if we were swallowing down vomit trying to rise or something....as she started downward. In seconds it was over and she said, "Whew, that was a bad one." I asked her what she remembered and she just remembered the biscuit and gravy "looking weird" and then getting really sick to her stomach. I asked her about the shushing and swallowing and she had zero memory of that.
The one I witnessed before was exactly the same excepting she didn't shush me.
She had two last Thursday. Part of my big concern is that I feel these episodes have a cycle to them. For instance, for days prior to the seizures, she was very anxious, panicky, dependent, emotional. She had the seizures and those things simply climaxed and erupted (as has happened before many times...we contributed it to her thyroid counts being off and the emotional laibility that can come with that).
During the period after the seizures (usually within the next few days) she can cry for entire days...but that usually occurs after some type of "injustice" done to her in her thinking. This is when her thinking becomes off. She'll perceive something as an extreme injustice or personal assault of some kind and can become extremely self-righteous, angry, belligerent even. We've come to learn that this is usually the climax in that after such events, she calms a bit...exhausted, sedate, overly-calm almost. After this, she becomes our girl again.
So, about five days before the seizures her symptoms ramped, she had the seizures on Thursday and continued with the emotional stuff that climaxed and erupted Saturday night into Sunday. This was a particularly bad period in long duration, but most times it's similar to this if not as long-lasting.
I appreciate you all hanging in there with me through this very long post that has so much history as it can be applied somewhere, I think.
We've talked with her family dr. (not endo yet...she has an appt. later this month with endo) and she said it certainly sounds as if she's having temporal lobe seizures and she has an EEG scheduled for Friday. We take it from there, I guess. She also put her on prozac to try to help the emotions/mooods and then to help immediately, xanax for one month as needed...just until the prozac can help, she sees a neuro, or whatever happens from here.
The specific questions I have are:
1.) Are the psychiatric-type symptoms common with these types of seizures and is there more I can do than just continue to try to respond calmly?
3.) I've read just a bit about autoimmune encephalitis and what I've read scares me absolutely to death...particularly systemic lupus (btw, she was tested for both RA and SL due to her liver involvement at times and both were negative at the time). What are the chances that this is autoimmune-related?
4.) If it's not autoimmune-related, I heard that this can be due to trauma to the brain, which she's had none I can think of. She never had fever-related seizures as a child either. That said, she did have a forceps birth that turned into an emergency due to mechonium stain. The got her out of me so quickly at that point, that I had the worst kind of tear a woman can have. What might the forceps have done, and could that have something to do with all of this (eyes, seizures, etc.)? Also, she had several to many severe, continual ear infections that resulted in tubes in her ears.
5.) With her being affected so much personality-wise during these times, does that indicate more an encephalitis or is it typical with temporal lobe seizures across the board?
How more can I help my baby??? *tears* She's been through so much...
Thank you so much for any responses and information.
Kim
I'm the *very* concerned mother of an almost 21-year-old daughter who's highly suspected of having temporal lobe seizures (complex partial).
Her history of the past two years has been amazing to say the least and this is just another scary part of a mind-bogging journey.
Two years ago this month she became very ill but seemed to do better. On Christmas Eve (and just after her 19th b'day) she found out she was pregnant. She was extremely ill, physically and mentally. We found out that she had Grave's Disease. It was very difficult to control and the pregnancy was a huge complication. Somehow, after out-of-control hyperthyroidism, three bouts of hepatitis due to the hyperthyroidism, etc., she delivered a very healthy baby four weeks early.
In January of this year she had her thyroid removed and did well. It was a race, though, to get it done. She began with postpartum thyroidtoxicosis and the meds weren't helping. She had to go on SSKI (potassium iodide drops), and the race was on to find a surgeon to fit her into his schedule in the small window of time we bought on the meds. With the removal of the thyroid, we thought it was over except for managing meds and possibly some minor mood swings, possible minor issues association with hypothyroidism.
She also had the goiter and grave's opthalmapathy. No dr's ever got it...no even her opthamologist. See, she's had glasses since just before her second b'day...vision being extremely poor.
I look into history, and she was always this energetic, more than usual, emotional ball...mostly delightful. I can see her first clear period of hyperthyroidism at about 16 years of age...just after her grandmother's unexpected death. Of course, we didn't know what it was. She had a few more of these periods, along with the issues that we now recognize as her having had the liver involvement (extreme itching with blood pooling under the skin where she'd scratch). So the dx. and everything that came along with it answered a lot of questions for us.
I feel this history important as it might link somehow to the temporal lobe seizures somehow?
Since about the same time as her first hyperthyroid period, she began to have these weird "thoughts/memories and stomach ache". She didn't tell me until she was about 18 and just thought they were weird. I did too. When we got the Grave's dx., I figured it somehow fit in there, but never could find out how.
Since I've had to be so involved in her care and her child's care, I've witnessed these stomach ache, weird periods a couple of times.
Of course, all she reported was the weird thought or vision and stomach ache because that's all she remembers! For instance, with this last one (just this past Thursday), that's all she remembered.
We were sitting there eating a Hardee's biscuit and gravy and we were talking. She didn't answer me, so I repeated and looked at her. She just held up one finger and very robotically said, "Shhh". She was very soft and robotic...almost as if calmly shushing a child. Immediately following that she put her hand to her chest and began to swallow...hard...as if we were swallowing down vomit trying to rise or something....as she started downward. In seconds it was over and she said, "Whew, that was a bad one." I asked her what she remembered and she just remembered the biscuit and gravy "looking weird" and then getting really sick to her stomach. I asked her about the shushing and swallowing and she had zero memory of that.
The one I witnessed before was exactly the same excepting she didn't shush me.
She had two last Thursday. Part of my big concern is that I feel these episodes have a cycle to them. For instance, for days prior to the seizures, she was very anxious, panicky, dependent, emotional. She had the seizures and those things simply climaxed and erupted (as has happened before many times...we contributed it to her thyroid counts being off and the emotional laibility that can come with that).
During the period after the seizures (usually within the next few days) she can cry for entire days...but that usually occurs after some type of "injustice" done to her in her thinking. This is when her thinking becomes off. She'll perceive something as an extreme injustice or personal assault of some kind and can become extremely self-righteous, angry, belligerent even. We've come to learn that this is usually the climax in that after such events, she calms a bit...exhausted, sedate, overly-calm almost. After this, she becomes our girl again.
So, about five days before the seizures her symptoms ramped, she had the seizures on Thursday and continued with the emotional stuff that climaxed and erupted Saturday night into Sunday. This was a particularly bad period in long duration, but most times it's similar to this if not as long-lasting.
I appreciate you all hanging in there with me through this very long post that has so much history as it can be applied somewhere, I think.
We've talked with her family dr. (not endo yet...she has an appt. later this month with endo) and she said it certainly sounds as if she's having temporal lobe seizures and she has an EEG scheduled for Friday. We take it from there, I guess. She also put her on prozac to try to help the emotions/mooods and then to help immediately, xanax for one month as needed...just until the prozac can help, she sees a neuro, or whatever happens from here.
The specific questions I have are:
1.) Are the psychiatric-type symptoms common with these types of seizures and is there more I can do than just continue to try to respond calmly?
3.) I've read just a bit about autoimmune encephalitis and what I've read scares me absolutely to death...particularly systemic lupus (btw, she was tested for both RA and SL due to her liver involvement at times and both were negative at the time). What are the chances that this is autoimmune-related?
4.) If it's not autoimmune-related, I heard that this can be due to trauma to the brain, which she's had none I can think of. She never had fever-related seizures as a child either. That said, she did have a forceps birth that turned into an emergency due to mechonium stain. The got her out of me so quickly at that point, that I had the worst kind of tear a woman can have. What might the forceps have done, and could that have something to do with all of this (eyes, seizures, etc.)? Also, she had several to many severe, continual ear infections that resulted in tubes in her ears.
5.) With her being affected so much personality-wise during these times, does that indicate more an encephalitis or is it typical with temporal lobe seizures across the board?
How more can I help my baby??? *tears* She's been through so much...
Thank you so much for any responses and information.
Kim
