Guest guest Posted January 20, 2011 Report Share Posted January 20, 2011 Carolyn, I wish I could be there to hug you. Yes, I have been where you are and still am, in a sense. My youngest is the reason I joined this AS group. He also has a Chiari Malformation which I just learned about last summer. But the oldest, who is closer to the lower functioning side of the autism spectrum, has been through lots of EEGs and MRIs and too much more. He has a complex congenital heart defect and for the past year or so I've been convinced that he's having seizures. But the type he's having aren't the obvious seizure that the average person would notice. So we did the 2-day EEG also and it didn't happen at all during that time. I'm just ready to pull my hair out at times. How old is your daughter? Is she aware of what's going on and about the EEG she's having done? Debra "Each day of our lives we make deposits in the memory banks of our children." - Swindell -April is Autism Awareness Month! 1 out of every 110 children is diagnosed with Autism. 2 of them are MINE! 9:1-3 From: Carolyn Weisbard <ccweisbard@...>Subject: Re: ( ) Sad Date: Thursday, January 20, 2011, 11:27 AM I do have to admit that I am ultra sensitive. After learning on Tuesday that they couldn't rule out seizures for my daughter, it was about more than I could take. She will be hospitalized on Monday for a 2 day video EEG, has anyone gone through this before, and if so any suggestions?? I am super stressed!!! Carolyn From: chris Dunn <christineshello@...> Sent: Thu, January 20, 2011 10:20:09 AMSubject: Re: ( ) Sad Do not leave Carolyn, some people will take things personally, remember we are all ultra exhausted, ultra stressed and ultra sensitive, but we still care about each other. Let's move on because there lots of things to learn from each other. Roxanna is right nobody is upset with you, at least I am not, From: Roxanna <MadIdeas@...> Sent: Thu, January 20, 2011 10:49:54 AMSubject: Re: ( ) Sad No, don't leave Carolyn. I was thinking about this this morning and I really thought you were talking about the influx of posts about how to get a dx and not really her post about what "rule out" means. I totally got your point and I'm not upset with you either. I wish she had not taken it so personally but that happens sometimes. Roxanna"I predict future happiness for Americans if they can prevent the government from wasting the labors of the people under the pretense of taking care of them." - Jefferson (AspergersSuppor t) Sad I am new to the group. My first post was the one about rule out as diagnosis. I have been too scared to post before, rightfully so after someone called it the prize to be had, the diagnosis that is. maybe I'm too soft but now I don't want to post anymore. I will continue to read and hope to gain knowledge but will not put myself out there. thanks, Jeana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2011 Report Share Posted January 20, 2011 is going to be 4 on Sunday. I have told her what we will be doing, but I don't think she understands at all. I have heard from some other list members (and maybe on another list) that they believed that their child was having issues with learning due to seizures. Well, this would explain a lot because does not know her ABC's or 123's (I think she can count to 4 pretty consistently now). She is trying very hard to learn, but just doesn't seem to be making progress and of course the school district says that there is nothing wrong and she is perfectly fine! Carolyn From: Debra <evsmommy@...> Sent: Thu, January 20, 2011 10:36:25 AMSubject: Re: ( ) Sad ~Carolyn Carolyn, I wish I could be there to hug you. Yes, I have been where you are and still am, in a sense. My youngest is the reason I joined this AS group. He also has a Chiari Malformation which I just learned about last summer. But the oldest, who is closer to the lower functioning side of the autism spectrum, has been through lots of EEGs and MRIs and too much more. He has a complex congenital heart defect and for the past year or so I've been convinced that he's having seizures. But the type he's having aren't the obvious seizure that the average person would notice. So we did the 2-day EEG also and it didn't happen at all during that time. I'm just ready to pull my hair out at times. How old is your daughter? Is she aware of what's going on and about the EEG she's having done? Debra "Each day of our lives we make deposits in the memory banks of our children." - Swindell -April is Autism Awareness Month! 1 out of every 110 children is diagnosed with Autism. 2 of them are MINE! 9:1-3 From: Carolyn Weisbard <ccweisbard@...>Subject: Re: ( ) Sad Date: Thursday, January 20, 2011, 11:27 AM I do have to admit that I am ultra sensitive. After learning on Tuesday that they couldn't rule out seizures for my daughter, it was about more than I could take. She will be hospitalized on Monday for a 2 day video EEG, has anyone gone through this before, and if so any suggestions?? I am super stressed!!! Carolyn From: chris Dunn <christineshello@...> Sent: Thu, January 20, 2011 10:20:09 AMSubject: Re: ( ) Sad Do not leave Carolyn, some people will take things personally, remember we are all ultra exhausted, ultra stressed and ultra sensitive, but we still care about each other. Let's move on because there lots of things to learn from each other. Roxanna is right nobody is upset with you, at least I am not, From: Roxanna <MadIdeas@...> Sent: Thu, January 20, 2011 10:49:54 AMSubject: Re: ( ) Sad No, don't leave Carolyn. I was thinking about this this morning and I really thought you were talking about the influx of posts about how to get a dx and not really her post about what "rule out" means. I totally got your point and I'm not upset with you either. I wish she had not taken it so personally but that happens sometimes. Roxanna"I predict future happiness for Americans if they can prevent the government from wasting the labors of the people under the pretense of taking care of them." - Jefferson (AspergersSuppor t) Sad I am new to the group. My first post was the one about rule out as diagnosis. I have been too scared to post before, rightfully so after someone called it the prize to be had, the diagnosis that is. maybe I'm too soft but now I don't want to post anymore. I will continue to read and hope to gain knowledge but will not put myself out there. thanks, Jeana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2011 Report Share Posted January 20, 2011 Carolyn, I'm sorry this has to be so difficult and frustrating. I wish people (including school personnel) would understand that, as parents, we know our child(ren) better than anyone and we would know if something wasn't quite right. I don't know if it would be helpful or not but have you tried using the Starfall website with as far as learning her letters and numbers? Are you concerned about her perception of what is going to happen Monday? Our children's hospital/healthcare system down here has a great website that is helpful in explaining tests and procedures to kids. You're in my prayers! Debra "Each day of our lives we make deposits in the memory banks of our children." - Swindell -April is Autism Awareness Month! 1 out of every 110 children is diagnosed with Autism. 2 of them are MINE! 9:1-3 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2011 Report Share Posted January 20, 2011 I am definitely a little nervous about how she is going to perceive things. I am afraid that she will think I am trying to take her away from her daddy (I will be staying with her and daddy will be visiting with her sister). She is attached at the hip to him most of the time, but he is not a good candidate to stay with her as he is Diabetic, epileptic and has severe ADHD, not to mention that I am a nurse I also wish the school personnel would choose to listen to me instead of fight me on every little thing!!! Carolyn From: Debra <evsmommy@...> Sent: Thu, January 20, 2011 1:32:27 PMSubject: Re: ( ) Sad ~Carolyn Carolyn, I'm sorry this has to be so difficult and frustrating. I wish people (including school personnel) would understand that, as parents, we know our child(ren) better than anyone and we would know if something wasn't quite right. I don't know if it would be helpful or not but have you tried using the Starfall website with as far as learning her letters and numbers? Are you concerned about her perception of what is going to happen Monday? Our children's hospital/healthcare system down here has a great website that is helpful in explaining tests and procedures to kids. You're in my prayers! Debra "Each day of our lives we make deposits in the memory banks of our children." - Swindell -April is Autism Awareness Month! 1 out of every 110 children is diagnosed with Autism. 2 of them are MINE! 9:1-3 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2011 Report Share Posted January 20, 2011 Carolyn,Welcome to group!I learn here by reading and post rarely.I hope all goes well with the EEG's. Keep fighting for your daughter at school you are her best advocate! I too have thought my daughterhas small seizures for she has a blank stare sometimes. Hugs to you and your daughter! Elinor Debra, I hope you do find out what type of seizures your son is experiencing.Sometimes the doctors too are the ones that do not realize that a parent knows their child better than anyone else. Have you spoken with yours sons ped. card about this yet... could it be heart related? I have a daughter (maeci's big sis) that has 's Syndrome, complex CHD's as well andkidney defects w/anomalies along with ADHD/NVLD. She sees 7 different specialist.Hugs, Elinor mom to 5 From: Carolyn Weisbard <ccweisbard@...> Sent: Thu, January 20, 2011 11:02:13 AMSubject: Re: ( ) Sad ~Carolyn is going to be 4 on Sunday. I have told her what we will be doing, but I don't think she understands at all. I have heard from some other list members (and maybe on another list) that they believed that their child was having issues with learning due to seizures. Well, this would explain a lot because does not know her ABC's or 123's (I think she can count to 4 pretty consistently now). She is trying very hard to learn, but just doesn't seem to be making progress and of course the school district says that there is nothing wrong and she is perfectly fine! Carolyn From: Debra <evsmommy@...> Sent: Thu, January 20, 2011 10:36:25 AMSubject: Re: ( ) Sad ~Carolyn Carolyn, I wish I could be there to hug you. Yes, I have been where you are and still am, in a sense. My youngest is the reason I joined this AS group. He also has a Chiari Malformation which I just learned about last summer. But the oldest, who is closer to the lower functioning side of the autism spectrum, has been through lots of EEGs and MRIs and too much more. He has a complex congenital heart defect and for the past year or so I've been convinced that he's having seizures. But the type he's having aren't the obvious seizure that the average person would notice. So we did the 2-day EEG also and it didn't happen at all during that time. I'm just ready to pull my hair out at times. How old is your daughter? Is she aware of what's going on and about the EEG she's having done? Debra "Each day of our lives we make deposits in the memory banks of our children." - Swindell -April is Autism Awareness Month! 1 out of every 110 children is diagnosed with Autism. 2 of them are MINE! 9:1-3 From: Carolyn Weisbard <ccweisbard@...>Subject: Re: ( ) Sad Date: Thursday, January 20, 2011, 11:27 AM I do have to admit that I am ultra sensitive. After learning on Tuesday that they couldn't rule out seizures for my daughter, it was about more than I could take. She will be hospitalized on Monday for a 2 day video EEG, has anyone gone through this before, and if so any suggestions?? I am super stressed!!! Carolyn From: chris Dunn <christineshello@...> Sent: Thu, January 20, 2011 10:20:09 AMSubject: Re: ( ) Sad Do not leave Carolyn, some people will take things personally, remember we are all ultra exhausted, ultra stressed and ultra sensitive, but we still care about each other. Let's move on because there lots of things to learn from each other. Roxanna is right nobody is upset with you, at least I am not, From: Roxanna <MadIdeas@...> Sent: Thu, January 20, 2011 10:49:54 AMSubject: Re: ( ) Sad No, don't leave Carolyn. I was thinking about this this morning and I really thought you were talking about the influx of posts about how to get a dx and not really her post about what "rule out" means. I totally got your point and I'm not upset with you either. I wish she had not taken it so personally but that happens sometimes. Roxanna"I predict future happiness for Americans if they can prevent the government from wasting the labors of the people under the pretense of taking care of them." - Jefferson (AspergersSuppor t) Sad I am new to the group. My first post was the one about rule out as diagnosis. I have been too scared to post before, rightfully so after someone called it the prize to be had, the diagnosis that is. maybe I'm too soft but now I don't want to post anymore. I will continue to read and hope to gain knowledge but will not put myself out there. thanks, Jeana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2011 Report Share Posted January 21, 2011 You're definitely in my thoughts and prayers, Carolyn. Please let us know how it goes. Debra "Each day of our lives we make deposits in the memory banks of our children." - Swindell -April is Autism Awareness Month! 1 out of every 110 children is diagnosed with Autism. 2 of them are MINE! 9:1-3 From: Carolyn Weisbard <ccweisbard@...>Subject: Re: ( ) Sad ~Carolyn Date: Thursday, January 20, 2011, 3:18 PM I am definitely a little nervous about how she is going to perceive things. I am afraid that she will think I am trying to take her away from her daddy (I will be staying with her and daddy will be visiting with her sister). She is attached at the hip to him most of the time, but he is not a good candidate to stay with her as he is Diabetic, epileptic and has severe ADHD, not to mention that I am a nurse I also wish the school personnel would choose to listen to me instead of fight me on every little thing!!! Carolyn From: Debra <evsmommy@...> Sent: Thu, January 20, 2011 1:32:27 PMSubject: Re: ( ) Sad ~Carolyn Carolyn, I'm sorry this has to be so difficult and frustrating. I wish people (including school personnel) would understand that, as parents, we know our child(ren) better than anyone and we would know if something wasn't quite right. I don't know if it would be helpful or not but have you tried using the Starfall website with as far as learning her letters and numbers? Are you concerned about her perception of what is going to happen Monday? Our children's hospital/healthcare system down here has a great website that is helpful in explaining tests and procedures to kids. You're in my prayers! Debra "Each day of our lives we make deposits in the memory banks of our children." - Swindell -April is Autism Awareness Month! 1 out of every 110 children is diagnosed with Autism. 2 of them are MINE! 9:1-3 Quote Link to comment Share on other sites More sharing options...
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