We were shopping a couple of weeks ago and my 9 yr old daughter suddenly said that she was not feeling well. She put her head on my chest and was feeling weak. I backed her up a couple of steps and looked at her and she looked very pail and her eyes were red, she looked very weak. I sat her down and got her a drink of Sierra Mist, and after a few minutes she was ok.
She was diagnosed as having atypical absence seizures and partial complex seizures in sept. of 2006. They mentioned that her seizures were generalized and stronger in her occipital lobe, but they seemed puzzled about it all. She was also diagnosed as having left pulmonary stenosis in 2006. The cardiologist insists, after many tests, that her stenosis was not severe enough to cause her any symptoms. Her seizures are not really noticable to those who don't know her like my self. Even the school says they don't recognize when she is having a seizure. She is not currently on any meds.
She has also been experiencing sudden feelings of being really excited and then really tired and hot and then really cold. When this is happening, she complains of a headache, stomache ache, and dizziness.
If anyone out there can lead me in the right direction as to what is happening with her, I would greatly appreciate it.
Thank you in advance for any advice or opinions that you might have to offer!
Your daughter should be on anti-epileptic medication. It is not judicious to leave her with a diagnosis of seizures and give no medicine. The pulmonary stenosis may or may not be paying a part in this, but one can not guarantee that it will not bring on a seizure in the future. Pulmonary stenosis leads to reduced blood flow to the lungs. The body has to compensate for it by hyperventilation. And the heart rate also increases marginally. These may induce chemical imbalance in the brain.
Her symptoms of excitement could be part of her partial seizures. Temporal lobe seizures do present with a variety of seizures.
Please discuss the option of anti-epileptics with her neurologist.
I am well aware of the fact that my daughter should be on meds, however when she failed on Keppra, and the Neuro Nurse practitioner left it up to me to choose another med for her, and refused to make that decision herself, we were kinda left high and dry.
I tried doing the research so I could make a decision as to which med she should be on, however, I came to the conclusion that I was not qualified.
I took her to another Ped. Neuro and he tried convincing me that it was impossible for an infant to have a seizure.
We are currently in the process of finding another Ped. Neurologist.
She has had this seizure disorder for her whole life. I expressed my concern to every doctor she ever went to. However, because her symptoms were not obvious, no one took me seriously.
She was not diagnosed till she was 8 years and 2 and a half months old. Finally after a note home from the school, that her eyes were rolling in the back of her head and she turned pale, and a new pediatrician, I finally got a referral to the neurologist and she was diagnosed.
Believe me, If I had a neurologist to take her to, she would have already been there and hopefully had her seizures under control. It is not because of lack of effort on my part.
Due to the poor quality of care that we received, I am not sure what to believe. I do know that my instincts tell me that there is more going on with her than just the seizures. Her system is just off. But, once again, nothing that I can give the doctors to convince them.
Thank you so much for your input on this! I truly do appreciate it.
A quick question; Are Partial Complex seizures from the Temporal Lobe! The Nurse Practioner was never really able to explain things in a way that I could fully grasp an understanding. She also stated that her seizures were generalized for some reason and that they were stronger in her occipital lobe. She seemed to be boggled by this. I honestly don't know where her seizures are coming from or what all this means.
I have also recently found out about kindling. This truly concerns me. It makes me wonder if her seizures are generalized because of this phenomenon. I mean she went almost 8 and a half years undiagnosed, and is still not on meds.
Her Pediatrician wrote another referral for my daughter to go back to the same Ped. Neuro where they diagnosed her. I have to call them on Monday to set the appointment.
This time I will insist on seeing the doctor instead of the Nurse Practitioner. Before when my daughter was the patient of the NP, they refused to let her see the doctor. They said that they don't trade off patients like that. This time we will start off with the doctor.
If you could shed some light on this it would be greatly appreciated!
Thank you for your concern!
I understand your situation and I fully appreciate your efforts.
One can have partial and generalized seizures at the same time. The seizures usually start of to be partial and then spread to the other parts of the body to be called generalized.
Partial seizures are traditionally known to originate from the temporal lobes. If the partial seizures activity generalizes, it spreads to other lobes. I wonder if she was diagnosed as "complex partial" and "generalized" by the same doctor.
Kindling does play a major role if seizures are not diagnosed or treated for a long time. Your daughter was not diagnosed in the first place. Small epileptogenic activities accumulate and trigger the seizure. This can be reversed now with medication.
Carbamazepine (Tegretol) is an effective and often a preferred anti-epileptic drug for complex partial seizures. But since she has generalization of the seizures, Valproate may also be a good option. I would try Tegretol first and then Valproate.
Do you see any effect of these seizures on her academic performance?
She does struggle in school and that is a whole nother battle. I have been trying to get her some help since she was 3 from her preschool. They told me she was fine, then at the end of the school year on her assessment they decided that she was a little behind. That is what I had been trying to tell them from the get go. The same game in elementary school. Since before she entered elementary school, I was trying to get her help. So that the help was in place when she started. I had her do 3rd grade over again this year. I asked for an evaluation (in writing) to be done. So instead they put interventions in place and now they claim that the interventions have worked, yet she keeps bringing home grades on her work that vary dramatically. Anywhere from A's to F's. There is no consistancy in her grades. We held a meeting and They said that there is no reason to do an evaluation. They absolutely refuse.
I made them well aware of the seizure disorder and even provided them with a copy of the report of her 2 day VEEG. They told me that they did not notice any seizure activity during her assessment, and that maybe I should get her tested for ADD. I told them that the signs of ADD that they noticed was actually her symptoms of the seizures. But yet they still refuse to do an evaluation on her, and provide her with any help.
Oh yeah, the interventions that they mentioned in the meeting, the teacher said that she does that stuff with her kids anyway, it is just how she teaches. So, she actually didn't do anything with my daughter that was different than what she does with the rest of her class. However, my daughter is pulled out 4 times a week to go to a reading comprehension class. For extra help. If I could get her seizures under control and figure out what else is going on with her system, I think she would be doing well in school. She loves to read and write and does so all the time here at home. She loves to write stories, songs, etc. She really should be doing better than what she is.
She was dignosed as having generalized by the same Nurse Practioner, Might I remind you that she never got to see the doctor there at that office, they refused to allow it.
They told me that all medicaid patients get the nurse practitioner.
After her 2day VEEG, the told me that she was having Partial Complex and Absence seizures and that her seizures were generalized and that they were stronger in her occipital lobe.
Where do the absence seizure come from. Are they also from the temporal lobe or are they from somewhere else.
Thank you so much for helping me to understand more of what this diagnosis means for my daughter.
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