RobinN
Super Mom
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Hi Kim -
You asked once about Rebecca's behavior, if it was erratic and I don't think I ever responded. She has done many things out of character. Some I must admit I consider is due to the changes her body is going through. Since we have started her on the progesterone, I figured her body was going through hormonal changes quickly and of course I would see a lot of PMS type of behavior in a accelerated way.
Rebecca, for the most part has only had tonic clonic seizures. When she was on tegretol (similar to trileptal) she had strange vision loss occurances. Some of this went on for days. She would stand up and her vision would go... not all the way but so that she needed an Aid at school. We finally attributed it to the medication. IMO the medication stopped the partial seizures from going all the way, but also caused the loss of vision at the same time. Of course the neurologist never wanted to admit that the meds could be causing this. That was a side effect that we couldn't live with. After about a month of not being on the medication it went away.
Could last night have been an aura that did not move to the full blown seizure?
I highly recommend the book Epilepsy:a new approach.... it has some great questions that the girls can ask themselves. You might check it out, I got it from Amazon. I think when they answer the questions others will be able to understand more to understand what is occuring.
The MRA is a test that can be done at the same time they do the MRI. It looks at the blood vessels. As for the EEG... Rebecca's first one was abnormal, but I was also told that can happen after a seizure. The brain can be in a tizzy for a while and then go back to its normal functioning. UCLA said that there was no activity that would make them think Epilepsy. They told me the heterotopic gray matter was not enough to cause epilepsy. USC on the other hand told me that it most definitely was a seizure focus and even had a specialist look at the vessels in the area to make sure there was nothing to be concerned with, because even to my eye I can see the abnormality. Hormones played a part in her triggers so we have attempted to correct that. After that I was getting so many confliciting opinions that I chose to follow some advice by Doctor John. Rebecca and I laugh that I would consider talking with a Vet, but he suggested the diet and I decided that I had nothing to lose. It was healthy and for the most part she has followed it. She has had TC seizures when she has not. Then I narrowed it down even further and saw that there were seizures around "food" items that were high in MSG (or the related byproducts). I did not realize how this ingredient can cause changes in hormones. So at the beginning of the month I asked her to please to not eat anything with those ingredients in it. So far so good. It really is a trial and error, research on your part, and a handful of ideas from the medical staff. Do you keep a dietary record too?
HUGS to you
You asked once about Rebecca's behavior, if it was erratic and I don't think I ever responded. She has done many things out of character. Some I must admit I consider is due to the changes her body is going through. Since we have started her on the progesterone, I figured her body was going through hormonal changes quickly and of course I would see a lot of PMS type of behavior in a accelerated way.
Rebecca, for the most part has only had tonic clonic seizures. When she was on tegretol (similar to trileptal) she had strange vision loss occurances. Some of this went on for days. She would stand up and her vision would go... not all the way but so that she needed an Aid at school. We finally attributed it to the medication. IMO the medication stopped the partial seizures from going all the way, but also caused the loss of vision at the same time. Of course the neurologist never wanted to admit that the meds could be causing this. That was a side effect that we couldn't live with. After about a month of not being on the medication it went away.
Could last night have been an aura that did not move to the full blown seizure?
I highly recommend the book Epilepsy:a new approach.... it has some great questions that the girls can ask themselves. You might check it out, I got it from Amazon. I think when they answer the questions others will be able to understand more to understand what is occuring.
The MRA is a test that can be done at the same time they do the MRI. It looks at the blood vessels. As for the EEG... Rebecca's first one was abnormal, but I was also told that can happen after a seizure. The brain can be in a tizzy for a while and then go back to its normal functioning. UCLA said that there was no activity that would make them think Epilepsy. They told me the heterotopic gray matter was not enough to cause epilepsy. USC on the other hand told me that it most definitely was a seizure focus and even had a specialist look at the vessels in the area to make sure there was nothing to be concerned with, because even to my eye I can see the abnormality. Hormones played a part in her triggers so we have attempted to correct that. After that I was getting so many confliciting opinions that I chose to follow some advice by Doctor John. Rebecca and I laugh that I would consider talking with a Vet, but he suggested the diet and I decided that I had nothing to lose. It was healthy and for the most part she has followed it. She has had TC seizures when she has not. Then I narrowed it down even further and saw that there were seizures around "food" items that were high in MSG (or the related byproducts). I did not realize how this ingredient can cause changes in hormones. So at the beginning of the month I asked her to please to not eat anything with those ingredients in it. So far so good. It really is a trial and error, research on your part, and a handful of ideas from the medical staff. Do you keep a dietary record too?
HUGS to you