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Neuropsychologist/Neurologist?!!
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<blockquote data-quote="buddy" data-source="post: 493224" data-attributes="member: 12886"><p>This all sounds so familiar. I am so sorry for you. What I think, makes it hard for even the professionals to sort through is, many many kids with Autism Spectrum Disorders (ASD) do get those kinds of feelings and behaviors. I have been surrounded by groups of parents during adapted sports, social groups etc....where on the side lines we all talk and guess what I found out? LOTS of kids with Autism Spectrum Disorders (ASD) threaten suicide, grab weapons, throw major meltdowns, run away and scream and swear etc. It made me feel better in a way, BUT I, like you knew there was a difference. These fake/dream feelings... they were called depersonalization and derealization symptoms. They know they are in the real world but are dissociating in this form. Well, we tried treating him like that. I was not the only one to say that he suddenly would switch. OK, well behavioral people would say...he probably was stewing/obsessing about something before and it suddenly was just too much. NOPE didn't really fit many times either...but did sometimes. </p><p></p><p>When our neurologist who has the son with autism took off to care for her kids (I know now it was also because her hubby a surgeon was deployed) I was forced to check out this gut instinct that it was really seizures at the main Childrens hospital which had a nationally known epilepsy program. I met people from all around the country there. Had tons of hope. Well they did a neuropsychologist evaluation while we were there since they had the time over three days. But in the end....they said no seizures...YES he did have abberant electrical activity in the area of the surgery, but not rising to the level of seizures. HMMM????? very suspicious. SO for three more years he was treated with Prozac for the anxiety/depersonalization/derealization symptoms. We now know that going off the Prozac is a GOOD thing..... he is able to restrain his actual aggression so much better this week. uggg 6+ years of prozac because they missed seizures!</p><p></p><p>So, when his neuro came back (Sorry I have told this before but if it helps you to know what to ask for....) she said it really does sound like LEFT sided temporal lobe seizures. His injury is RT but was also global because of the high pressures for so long. While we were in patient, the head of the dept was his doctor. SHE was amazing! I bet you can even call her because after this recent time when he didn't get admitted thru the ER hospital next door, our neuro called her and she remembered Q right away and said, OH he was GREAT in the hospital....of course we would take him. So she remembered the case (she told me she would be cause it is the only time in over 30 years using those extra temporal lobe leads had paid off). SO, she is the one after one day who said, lets just add these extra leads and that is when people started jumping.... he had this extra electrical stuff that started on the rt. and moved to the left...staying only in the temporal lobes.... not always seizures but super frequent very unusual electrical activity. Proof it is seizures in my mind is that the seizure medications WORK! </p><p></p><p>Problem with eeg studies is of course that the person has to have the seizure in their presence. IF this happens a lot then there is a high chance he will be able to have it ruled in or out. I would think anyone could add those extra leads but to find out what to specifically ask for, I can ask our neuro (we see her on the 3rd I think and I bet calling that doctor would really give you more info. She is so nice and I bet she would talk to you. She really really respects parent input. AND what the child is saying. She was adamant that Q knew his body and would not be saying that if it was not serious. She felt he deserved the chance to not have those awful feelings. </p><p></p><p>Of course you can pm me if you want the doctor names and numbers. It is an amazing clinic and since my mom used to work for their evaluation team as a receptionist, I know they help arrange housing etc. If you do decide to do a long term evaluation like that, if you can double up to get other testing like neuropsychologist or Occupational Therapist (OT) or pt etc...(such an advantage to have him right there for a long time so they can do lots). </p><p></p><p>There are also ambulatory eegs where they send you home on them for a day to a few days and you push a button that is attached to mark the time and journal when and why you pushed the button. I would hope adding those leads could help you sort through if it is something going on there or not. The other thing that could be helpful is a PET scan. they can see areas of brain as they are activated and how they are activated...... might not be worth it but could be.</p><p></p><p>oh, one more thing.... I was told and have read on epilepsy sites that if the temporal lobe seizures are deep in the lobe, any eeg might miss it....then sometimes only trials of medications can help you decide...</p></blockquote><p></p>
[QUOTE="buddy, post: 493224, member: 12886"] This all sounds so familiar. I am so sorry for you. What I think, makes it hard for even the professionals to sort through is, many many kids with Autism Spectrum Disorders (ASD) do get those kinds of feelings and behaviors. I have been surrounded by groups of parents during adapted sports, social groups etc....where on the side lines we all talk and guess what I found out? LOTS of kids with Autism Spectrum Disorders (ASD) threaten suicide, grab weapons, throw major meltdowns, run away and scream and swear etc. It made me feel better in a way, BUT I, like you knew there was a difference. These fake/dream feelings... they were called depersonalization and derealization symptoms. They know they are in the real world but are dissociating in this form. Well, we tried treating him like that. I was not the only one to say that he suddenly would switch. OK, well behavioral people would say...he probably was stewing/obsessing about something before and it suddenly was just too much. NOPE didn't really fit many times either...but did sometimes. When our neurologist who has the son with autism took off to care for her kids (I know now it was also because her hubby a surgeon was deployed) I was forced to check out this gut instinct that it was really seizures at the main Childrens hospital which had a nationally known epilepsy program. I met people from all around the country there. Had tons of hope. Well they did a neuropsychologist evaluation while we were there since they had the time over three days. But in the end....they said no seizures...YES he did have abberant electrical activity in the area of the surgery, but not rising to the level of seizures. HMMM????? very suspicious. SO for three more years he was treated with Prozac for the anxiety/depersonalization/derealization symptoms. We now know that going off the Prozac is a GOOD thing..... he is able to restrain his actual aggression so much better this week. uggg 6+ years of prozac because they missed seizures! So, when his neuro came back (Sorry I have told this before but if it helps you to know what to ask for....) she said it really does sound like LEFT sided temporal lobe seizures. His injury is RT but was also global because of the high pressures for so long. While we were in patient, the head of the dept was his doctor. SHE was amazing! I bet you can even call her because after this recent time when he didn't get admitted thru the ER hospital next door, our neuro called her and she remembered Q right away and said, OH he was GREAT in the hospital....of course we would take him. So she remembered the case (she told me she would be cause it is the only time in over 30 years using those extra temporal lobe leads had paid off). SO, she is the one after one day who said, lets just add these extra leads and that is when people started jumping.... he had this extra electrical stuff that started on the rt. and moved to the left...staying only in the temporal lobes.... not always seizures but super frequent very unusual electrical activity. Proof it is seizures in my mind is that the seizure medications WORK! Problem with eeg studies is of course that the person has to have the seizure in their presence. IF this happens a lot then there is a high chance he will be able to have it ruled in or out. I would think anyone could add those extra leads but to find out what to specifically ask for, I can ask our neuro (we see her on the 3rd I think and I bet calling that doctor would really give you more info. She is so nice and I bet she would talk to you. She really really respects parent input. AND what the child is saying. She was adamant that Q knew his body and would not be saying that if it was not serious. She felt he deserved the chance to not have those awful feelings. Of course you can pm me if you want the doctor names and numbers. It is an amazing clinic and since my mom used to work for their evaluation team as a receptionist, I know they help arrange housing etc. If you do decide to do a long term evaluation like that, if you can double up to get other testing like neuropsychologist or Occupational Therapist (OT) or pt etc...(such an advantage to have him right there for a long time so they can do lots). There are also ambulatory eegs where they send you home on them for a day to a few days and you push a button that is attached to mark the time and journal when and why you pushed the button. I would hope adding those leads could help you sort through if it is something going on there or not. The other thing that could be helpful is a PET scan. they can see areas of brain as they are activated and how they are activated...... might not be worth it but could be. oh, one more thing.... I was told and have read on epilepsy sites that if the temporal lobe seizures are deep in the lobe, any eeg might miss it....then sometimes only trials of medications can help you decide... [/QUOTE]
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