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My daughter has just started with the staring spells. She asked me if I ever look at something and then my eyes won't let me look away? She says she can hear what is going on around her but her eyes won't let her look away. Also, she says during these times she has like nightmare sorts of dreams. My ped thinks it is more of an OCD thing than seizures. She said she wouldn't remember it if it were a siezure. She still wants to get an EEG anyway. I doubt my daughter will cooperate. Her fear of any sort of medical procedure has escalated to the point that she has to be sedated if we are doing anything more that blood pressure & they can't be sedated for EEG. Are these the same kind of symptoms you kids experience with there staring episodes? I swear, it's something different everyday....

 

Dedee

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Yes, Dedee. My dd could talk to us sometimes while staring, but couldn't break the "comfortable stare"

 

I agree, I think it is an OCD thing and it went away with IVIG which makes me more convinced it is a pandas symptom.

 

Jill

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Wait - are you guys telling me those staring spells are not normal? I thought everyone had them. I have been having them since I have been a kid. Let me tell you - I would never want to give them up. The feeling you get when you have them is total zen. It is the ultimate in relaxation. Your eyes lock on something, they get all glazed over, you eyes get out of focus, you experience peace for a few seconds. I thought everyone did that.

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PhillyPA,

 

I would agree. A comfortable stare is completely normal. But my dd was doing them with such frequency and with no control to break them, it became interfering. I would say many of her OCD/tic things stemmed from "normal" behaviors. Who doesn't enjoy a good stretch? My dd was stretching excessively, especially when asked to sit still. I sat next to her in an assembly once and counted 11 stretches in 3 minutes. I mentioned the coughing tic earlier today where it started as a perfectly normal action that turned into an OCD/tic thing. The bar was the frequency and when these behaviors became interfering with daily functioning.

 

I may not want to break out of a comfortable stare if I'm tired or deep in thought but I can in a heartbeat if need be. She could not even though it was resulting in the negative consequences of being criticized or nagged by adults and peers.

 

I suppose that is the difference and why it does not look like seizures over time to the skilled observer.

Edited by JAG10
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So your not sure that PANDAS is the diagnosis? Peglem... could u tell me some of your child's symptoms, if u don't mind. Is sleep REALLY bad?

Well, I'll tell ya, Wilma. My daughter is nonverbal and has been "diagnosed" with autism since she was 3 years old. Until she was 10 (when we found my current pediatrician) I really couldn't get a doctor to check anything- everything was attributed to autism...illness just didn't exist in autism, I guess. She did, in spite of being sick with URIs almost constantly (was told its probably allergies because autistic kids get those a lot!), develop skills in reading and math, and even had quite a few (a hundred or so) verbal words that she used appropriately. Around 8yo, that was all lost and she degenerated into a mess of misery and self injury. But we were still seeing things through an autism filter and her OCD was called stims, stereotypies, and perseveration, etc. Around age 10, we had an insurance change and had to switch docs and stumbled upon her current pediatrician. At the same time, I was beginning to hear about PANDAS-the research was very new (was it really only 5 years ago?) and asked the new pediatrician to test for strep, even though she had no typical symptoms. She came up positive and we went through a couple of years of courses of abx whenever she tested positive for strep- which was whenever she was not on abx (well, there were a few negatives in there). She improved on abx every time and then when her behavior deteriorated, I'd bring her back in and she'd test positive and then we'd have another go round of abx. Getting the help of specialists locally was impossible. Her tonsils came out when she was 12. We thought that'd take care of the strep, so did not keep up the abx, and nobody wanted to swab a throat that was healing from tonsillectomy anyway. We had one of the worse flares ever after that. Bad, bad photophobia. Things that looked like seizures, but did not show up as seizure activity during the 8 day video eeg. Constant psychotic rages. After she healed the strep was back and she had bad vag. yeast as well. About eating and sleeping...was an issue her whole life- Until age 6 we kept her on bottles of strawberry protein diet shakes just so she'd get enough nutrition to stay alive- she would not eat solids and though she could drink from a cup, she would only drink water from a cup. Finally got rid of all the bottles when she was 6 and wouldn't drink them anymore because she was sick w/ a sore throat and it hurt to swallow. (that's what I think anyway- doctors did not check her throat because autistic kids have eating issues and the endless drooling is supposedly typical of autism as well). So we found a few things that she would eat- not great nutrition, but the best we could do. And between birth and age 10 when she started getting abx, I think she slept through the night maybe 10 times or so. I honestly do not remember much because I was so fricken sleep deprived myself! Anyway, with abx the sleep got better- somewhere in there we gave risperdal and other psych meds several tries. The risperdal did help her sleep...until it didn't anymore- but hey, it was a nice month! Still, when she has a PANDAS flare, sleep becomes an issue again and so does bedwetting. OCD gets in the way of sleep- she'll be just about drifting off then jumps up in a frenzy to perform whatever thing is OCD at that time, and has a terrible time getting it right. She wakes in the middle of the night to do the OCD, as well- could be she dreams OCD!

 

The reason I said I'm not sure about PANDAS is because just recently she's had some extra stuff going on- looked like sydenham's chorea/lupus/hyperthyroid/diabetes insipidus/arthritis all mixed together. Then she tested positive on a rapid strep test while on 2 ABXs. So a course of clindamycin was administered and 2 days later she had a rapid positive again- but a swab was sent in for culturing and sensitivity testing. The culture came back negative for strep. So the "more than PANDAS" symptoms, together with the fact that we no longer know if any of her rapid strep positives were actually strep...I'm feeling sort of lost. Though her "other symptoms" are slowly improving, her PANDAS stuff (or what we thought was?) is definitely getting worse. In fact I had to take a break in the midst of writing this to deal with a twenty minute bout of SIBs and aggression. I can pretty much gauge how poorly she's doing by how beat up I am.

 

I'm sorry this is so long, (and you're probably sorry you asked) but once i started it just all came pouring out. I hate this crap!

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It seems that all of these PANDAS kids have normal EEG's.

My child's EEG's were abnormal. She probably has more going on then just PANDAS, I guess. Isn't there any PANDAS kids that have abnormal EEG's?

 

Me. Showed Epileptogenesis in November of 2009 but haven't gotten it looked at since. -___-

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So your not sure that PANDAS is the diagnosis? Peglem... could u tell me some of your child's symptoms, if u don't mind. Is sleep REALLY bad?

Well, I'll tell ya, Wilma. My daughter is nonverbal and has been "diagnosed" with autism since she was 3 years old. Until she was 10 (when we found my current pediatrician) I really couldn't get a doctor to check anything- everything was attributed to autism...illness just didn't exist in autism, I guess. She did, in spite of being sick with URIs almost constantly (was told its probably allergies because autistic kids get those a lot!), develop skills in reading and math, and even had quite a few (a hundred or so) verbal words that she used appropriately. Around 8yo, that was all lost and she degenerated into a mess of misery and self injury. But we were still seeing things through an autism filter and her OCD was called stims, stereotypies, and perseveration, etc. Around age 10, we had an insurance change and had to switch docs and stumbled upon her current pediatrician. At the same time, I was beginning to hear about PANDAS-the research was very new (was it really only 5 years ago?) and asked the new pediatrician to test for strep, even though she had no typical symptoms. She came up positive and we went through a couple of years of courses of abx whenever she tested positive for strep- which was whenever she was not on abx (well, there were a few negatives in there). She improved on abx every time and then when her behavior deteriorated, I'd bring her back in and she'd test positive and then we'd have another go round of abx. Getting the help of specialists locally was impossible. Her tonsils came out when she was 12. We thought that'd take care of the strep, so did not keep up the abx, and nobody wanted to swab a throat that was healing from tonsillectomy anyway. We had one of the worse flares ever after that. Bad, bad photophobia. Things that looked like seizures, but did not show up as seizure activity during the 8 day video eeg. Constant psychotic rages. After she healed the strep was back and she had bad vag. yeast as well. About eating and sleeping...was an issue her whole life- Until age 6 we kept her on bottles of strawberry protein diet shakes just so she'd get enough nutrition to stay alive- she would not eat solids and though she could drink from a cup, she would only drink water from a cup. Finally got rid of all the bottles when she was 6 and wouldn't drink them anymore because she was sick w/ a sore throat and it hurt to swallow. (that's what I think anyway- doctors did not check her throat because autistic kids have eating issues and the endless drooling is supposedly typical of autism as well). So we found a few things that she would eat- not great nutrition, but the best we could do. And between birth and age 10 when she started getting abx, I think she slept through the night maybe 10 times or so. I honestly do not remember much because I was so fricken sleep deprived myself! Anyway, with abx the sleep got better- somewhere in there we gave risperdal and other psych meds several tries. The risperdal did help her sleep...until it didn't anymore- but hey, it was a nice month! Still, when she has a PANDAS flare, sleep becomes an issue again and so does bedwetting. OCD gets in the way of sleep- she'll be just about drifting off then jumps up in a frenzy to perform whatever thing is OCD at that time, and has a terrible time getting it right. She wakes in the middle of the night to do the OCD, as well- could be she dreams OCD!

 

The reason I said I'm not sure about PANDAS is because just recently she's had some extra stuff going on- looked like sydenham's chorea/lupus/hyperthyroid/diabetes insipidus/arthritis all mixed together. Then she tested positive on a rapid strep test while on 2 ABXs. So a course of clindamycin was administered and 2 days later she had a rapid positive again- but a swab was sent in for culturing and sensitivity testing. The culture came back negative for strep. So the "more than PANDAS" symptoms, together with the fact that we no longer know if any of her rapid strep positives were actually strep...I'm feeling sort of lost. Though her "other symptoms" are slowly improving, her PANDAS stuff (or what we thought was?) is definitely getting worse. In fact I had to take a break in the midst of writing this to deal with a twenty minute bout of SIBs and aggression. I can pretty much gauge how poorly she's doing by how beat up I am.

 

I'm sorry this is so long, (and you're probably sorry you asked) but once i started it just all came pouring out. I hate this crap!

 

Peggy,

 

I read your post yesterday and wanted to respond, but couldn't think of how. I'm trying to think of a word that honors your love and devotion to your daughter and the one that keeps coming to mind is holy. Your strength is so admirable; you are an inspiration to all of us here. You frequently enter my thoughts when I am praying, but in those moments of prayer, it is you that is giving to me spiritually.

 

You are an amazing, amazing woman and mother. Let it pour out. I hate this crap too.

 

Jill

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I'm sorry this is so long, (and you're probably sorry you asked) but once i started it just all came pouring out. I hate this crap!

I'm sure we got the condensed version. I hope you get an answer soon. The worst thing for a parent to hear is to do nothing and watch your child regress and suffer. Keep searching. You inspire us all. Good luck.

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So your not sure that PANDAS is the diagnosis? Peglem... could u tell me some of your child's symptoms, if u don't mind. Is sleep REALLY bad?

Well, I'll tell ya, Wilma. My daughter is nonverbal and has been "diagnosed" with autism since she was 3 years old. Until she was 10 (when we found my current pediatrician) I really couldn't get a doctor to check anything- everything was attributed to autism...illness just didn't exist in autism, I guess. She did, in spite of being sick with URIs almost constantly (was told its probably allergies because autistic kids get those a lot!), develop skills in reading and math, and even had quite a few (a hundred or so) verbal words that she used appropriately. Around 8yo, that was all lost and she degenerated into a mess of misery and self injury. But we were still seeing things through an autism filter and her OCD was called stims, stereotypies, and perseveration, etc. Around age 10, we had an insurance change and had to switch docs and stumbled upon her current pediatrician. At the same time, I was beginning to hear about PANDAS-the research was very new (was it really only 5 years ago?) and asked the new pediatrician to test for strep, even though she had no typical symptoms. She came up positive and we went through a couple of years of courses of abx whenever she tested positive for strep- which was whenever she was not on abx (well, there were a few negatives in there). She improved on abx every time and then when her behavior deteriorated, I'd bring her back in and she'd test positive and then we'd have another go round of abx. Getting the help of specialists locally was impossible. Her tonsils came out when she was 12. We thought that'd take care of the strep, so did not keep up the abx, and nobody wanted to swab a throat that was healing from tonsillectomy anyway. We had one of the worse flares ever after that. Bad, bad photophobia. Things that looked like seizures, but did not show up as seizure activity during the 8 day video eeg. Constant psychotic rages. After she healed the strep was back and she had bad vag. yeast as well. About eating and sleeping...was an issue her whole life- Until age 6 we kept her on bottles of strawberry protein diet shakes just so she'd get enough nutrition to stay alive- she would not eat solids and though she could drink from a cup, she would only drink water from a cup. Finally got rid of all the bottles when she was 6 and wouldn't drink them anymore because she was sick w/ a sore throat and it hurt to swallow. (that's what I think anyway- doctors did not check her throat because autistic kids have eating issues and the endless drooling is supposedly typical of autism as well). So we found a few things that she would eat- not great nutrition, but the best we could do. And between birth and age 10 when she started getting abx, I think she slept through the night maybe 10 times or so. I honestly do not remember much because I was so fricken sleep deprived myself! Anyway, with abx the sleep got better- somewhere in there we gave risperdal and other psych meds several tries. The risperdal did help her sleep...until it didn't anymore- but hey, it was a nice month! Still, when she has a PANDAS flare, sleep becomes an issue again and so does bedwetting. OCD gets in the way of sleep- she'll be just about drifting off then jumps up in a frenzy to perform whatever thing is OCD at that time, and has a terrible time getting it right. She wakes in the middle of the night to do the OCD, as well- could be she dreams OCD!

 

The reason I said I'm not sure about PANDAS is because just recently she's had some extra stuff going on- looked like sydenham's chorea/lupus/hyperthyroid/diabetes insipidus/arthritis all mixed together. Then she tested positive on a rapid strep test while on 2 ABXs. So a course of clindamycin was administered and 2 days later she had a rapid positive again- but a swab was sent in for culturing and sensitivity testing. The culture came back negative for strep. So the "more than PANDAS" symptoms, together with the fact that we no longer know if any of her rapid strep positives were actually strep...I'm feeling sort of lost. Though her "other symptoms" are slowly improving, her PANDAS stuff (or what we thought was?) is definitely getting worse. In fact I had to take a break in the midst of writing this to deal with a twenty minute bout of SIBs and aggression. I can pretty much gauge how poorly she's doing by how beat up I am.

 

I'm sorry this is so long, (and you're probably sorry you asked) but once i started it just all came pouring out. I hate this crap!

 

Peggy,

 

I read your post yesterday and wanted to respond, but couldn't think of how. I'm trying to think of a word that honors your love and devotion to your daughter and the one that keeps coming to mind is holy. Your strength is so admirable; you are an inspiration to all of us here. You frequently enter my thoughts when I am praying, but in those moments of prayer, it is you that is giving to me spiritually.

 

You are an amazing, amazing woman and mother. Let it pour out. I hate this crap too.

 

Jill

 

I second that! You're amazing, Peggy!

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