Guest guest Posted March 14, 2002 Report Share Posted March 14, 2002 In a message dated 3/14/02 8:23:18 PM Pacific Standard Time, heather@... writes: << Have any of the children on the list had problems with their pupils being dilated when they shouldn't be? Just another interesting finding :-) >> 's pupils are dilated often! In fact, when I was going through the CPS mess, the school counselor actually wrote in her report to CPS that 's pupils were hugely dilated at school and even had someone come in and verify they were dilated. I just thought it was because he has light colored eyes and was inside a building. Now, as a former paramedic, I know that if ONE pupil is dilated and the other isn't, that is a concern. Or, if dilated pupils don't respond to light (by constricting). Dena Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2002 Report Share Posted March 15, 2002 Hi: Have any of the children on the list had problems with their pupils being dilated when they shouldn't be? Just another interesting finding :-) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2002 Report Share Posted March 15, 2002 >Have any of the children on the list had problems with their pupils being >dilated when they shouldn't be? >Just another interesting finding :-) We do not know yet if Emilie has mito, so I don't know how much this helps, but we often see the extremely dilated eyes with her. In fact, one of Emilie's nicknames is " Miss Big Eyes " . -- Mom to: Emilie (15), cerebral palsy; also undiagnosed episodic vomiting, flushing, pallor, purple hands after meals, purple when chilled, dark circles under eyes, sudden drowsiness, fatigue, low-grade fevers, reduced muscle tone, glassy eyes, dilated pupils, irritability, diarrhea, constipation, tachycardia, heat intolerance, difficulty with fasting, etc. Positive response to carnitine (improved energy & mood) Kaitlin (15), cerebral palsy, asthma, mild autonomic symptoms Ian (20) migraines Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2002 Report Share Posted March 15, 2002 heather, jessica's pupils have been dilated since she was 3 yrs old. they react to strong light but only for a minute or so then open right back up. at first the had no idea what caused it, now they tell me its dysautonomia. take care, michele, mom to jessica, 8 yrs old, mitochondrial diease, g-tube, MR, intractable seizures, bladder dysfunction, dysautonomia and light of my life. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2002 Report Share Posted March 15, 2002 We had a weird thing happen the other day with when we took her to the opthomologist. They put the drops in her eyes to dialate and in less than five minutes they were fully dialated and then some. The nurse seemed bothered about this. The little boy next door had his done at the same time and it took him 45 min or so. 's eyes two days later are still not back to normal. Know one seems to have a explanation but it is sure weird. I think we all could use a little more input on this. Have a great weekend all! Horsely Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2002 Report Share Posted March 15, 2002 , What is dysautonnomia? Thanks, Horsley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2002 Report Share Posted March 15, 2002 Hi, A couple of years ago, I thought I noticed that one of my daughter's pupils looked dilated. Cooincidently, a vision specialist noticed it,too and referred us to an opthalmologist. It turns out Chelsea has astigmatism, worse in one eye. That is why one of her pupils was slightly dilated. e, Chelsea's mom(non-specific mito) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2002 Report Share Posted March 15, 2002 Hello, My son 's eyes are dilated very often. The neuro feels it is most likely due to autonomic dysfunction. Seizure activity is another possiblity. H Re: Dilated Pupils Hi: Have any of the children on the list had problems with their pupils being dilated when they shouldn't be? Just another interesting finding :-) Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2002 Report Share Posted March 15, 2002 hi, my daughter Brigitte always has dilated pupils when they shouldn't be. her eye doc. said it was called leber's.just a thought. karen Re: Dilated Pupils > In a message dated 3/14/02 8:23:18 PM Pacific Standard Time, > heather@... writes: > > << Have any of the children on the list had problems with their pupils being > dilated when they shouldn't be? > Just another interesting finding :-) > >> > > 's pupils are dilated often! In fact, when I was going through the > CPS mess, the school counselor actually wrote in her report to CPS that > 's pupils were hugely dilated at school and even had someone come in > and verify they were dilated. I just thought it was because he has light > colored eyes and was inside a building. > > Now, as a former paramedic, I know that if ONE pupil is dilated and the other > isn't, that is a concern. Or, if dilated pupils don't respond to light (by > constricting). > > Dena > > > Please contact mito-owner with any problems or questions. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2002 Report Share Posted March 15, 2002 Just one more thing to think about - my son's eyes are always much larger than normal due to vision loss caused by optic nerve atrophy. The doc explained that the pupils get bigger to try and allow more light in so that he can see better. Just mentioning it so that if there is any concern about the vision being abnormal, it's checked out by an ophthalmologist to make sure there isn't any vision loss. -Terri >From: 31528@... >Reply-To: Mito >To: Mito >Subject: Re: Re: Dilated Pupils >Date: Fri, 15 Mar 2002 10:22:17 EST > > >Have any of the children on the list had problems with their pupils being > >dilated when they shouldn't be? > >Just another interesting finding :-) > >We do not know yet if Emilie has mito, so I don't know how much this >helps, but we often see the extremely dilated eyes with her. In fact, >one of Emilie's nicknames is " Miss Big Eyes " . > > > > -- Mom to: >Emilie (15), cerebral palsy; also undiagnosed episodic vomiting, >flushing, pallor, purple hands after meals, purple when chilled, dark >circles under eyes, sudden drowsiness, fatigue, low-grade fevers, reduced >muscle tone, glassy eyes, dilated pupils, irritability, diarrhea, >constipation, tachycardia, heat intolerance, difficulty with fasting, >etc. Positive response to carnitine (improved energy & mood) >Kaitlin (15), cerebral palsy, asthma, mild autonomic symptoms >Ian (20) migraines > > > > <html><DIV></DIV> <DIV></DIV></html> _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2002 Report Share Posted March 15, 2002 Just one more thing to think about - my son's eyes are always much larger than normal due to vision loss caused by optic nerve atrophy. The doc explained that the pupils get bigger to try and allow more light in so that he can see better. Just mentioning it so that if there is any concern about the vision being abnormal, it's checked out by an ophthalmologist to make sure there isn't any vision loss. -Terri >From: 31528@... >Reply-To: Mito >To: Mito >Subject: Re: Re: Dilated Pupils >Date: Fri, 15 Mar 2002 10:22:17 EST > > >Have any of the children on the list had problems with their pupils being > >dilated when they shouldn't be? > >Just another interesting finding :-) > >We do not know yet if Emilie has mito, so I don't know how much this >helps, but we often see the extremely dilated eyes with her. In fact, >one of Emilie's nicknames is " Miss Big Eyes " . > > > > -- Mom to: >Emilie (15), cerebral palsy; also undiagnosed episodic vomiting, >flushing, pallor, purple hands after meals, purple when chilled, dark >circles under eyes, sudden drowsiness, fatigue, low-grade fevers, reduced >muscle tone, glassy eyes, dilated pupils, irritability, diarrhea, >constipation, tachycardia, heat intolerance, difficulty with fasting, >etc. Positive response to carnitine (improved energy & mood) >Kaitlin (15), cerebral palsy, asthma, mild autonomic symptoms >Ian (20) migraines > > > > <html><DIV></DIV> <DIV></DIV></html> _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2002 Report Share Posted March 16, 2002 Hi: This sure is interesting. Sounds like a common finding. Dysautonia is autonomic nervous system "misfiring". That's all I know to make it simple. Re: Dilated Pupils , What is dysautonnomia? Thanks, HorsleyPlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2002 Report Share Posted March 16, 2002 Hi: This sure is interesting. Sounds like a common finding. Dysautonia is autonomic nervous system "misfiring". That's all I know to make it simple. Re: Dilated Pupils , What is dysautonnomia? Thanks, HorsleyPlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2002 Report Share Posted March 16, 2002 This can also be an autonomic phenomenon as well. The nerves that control the dilation of the pupils are autonomic and if there is dysautonomia, there can be exxagerated or paradoxical responses. My youngest has always had very large pupils and they don't always respond appropriately... Jeannine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2002 Report Share Posted March 16, 2002 This can also be an autonomic phenomenon as well. The nerves that control the dilation of the pupils are autonomic and if there is dysautonomia, there can be exxagerated or paradoxical responses. My youngest has always had very large pupils and they don't always respond appropriately... Jeannine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2002 Report Share Posted March 19, 2002 After reading all your responses I am very frustrated with our opthamologist and his office staff. Several of Ronan's therapists noticed that his pupils are very dialated. One therapist suggested a " functional vision exam " (not performed by a Doctor, but a special therapist) and we also arranaged for an Opthamologist appiontment. Turned out both exams were within a few days of each other. When we went to the opthmologist an assistant came in to do a primary exam and put in dilating drops. Before she put in the drops I mentioned that his therapists thought his eyes were very dialated. The assistant looked kind of annoyed and said that young children often had very dialated eyes (Ronan is 2yrs). The opthamologist said the same. Stupid thing is , ALL Ronan's therapists (OT , PT, Speech and visual) ONLY deal with children and most of them only work with children between the ages of 3 and 5 years! Don't you think they would have seen enough kids to notice if one was a bit different that the norm! I am glad I have read all these other posts. Ronan has some symptoms of dysautonomia so perhaps I can chalk this up to that (although the visual specialist also mentioned Cortical Visual Impairment, his optic nerves are normal). I am going to try some sunglasses because he is light sensative as well. Take Care, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2002 Report Share Posted March 19, 2002 After reading all your responses I am very frustrated with our opthamologist and his office staff. Several of Ronan's therapists noticed that his pupils are very dialated. One therapist suggested a " functional vision exam " (not performed by a Doctor, but a special therapist) and we also arranaged for an Opthamologist appiontment. Turned out both exams were within a few days of each other. When we went to the opthmologist an assistant came in to do a primary exam and put in dilating drops. Before she put in the drops I mentioned that his therapists thought his eyes were very dialated. The assistant looked kind of annoyed and said that young children often had very dialated eyes (Ronan is 2yrs). The opthamologist said the same. Stupid thing is , ALL Ronan's therapists (OT , PT, Speech and visual) ONLY deal with children and most of them only work with children between the ages of 3 and 5 years! Don't you think they would have seen enough kids to notice if one was a bit different that the norm! I am glad I have read all these other posts. Ronan has some symptoms of dysautonomia so perhaps I can chalk this up to that (although the visual specialist also mentioned Cortical Visual Impairment, his optic nerves are normal). I am going to try some sunglasses because he is light sensative as well. Take Care, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2002 Report Share Posted March 19, 2002 Cara, This thing with the dialated eyes was new to ne also but last week when I took for an Opthomology exam it was strange because it took just about 5 min. for her eyes to completely dialatenot the usual 30 or so. But after we left the office the the day progressed her eyes never returned to normal. Two days later they were still dialated, but one more than the other. This was on the 12th of this month and today they are still dialated. Both about the same today. I dont understand this but sure hope someone has some insight. Have a great week! Horsley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2002 Report Share Posted March 19, 2002 Hello. I am brand new to the list. My son had extremely dilated eyes until going on L-Carnitine a year and half ago. He was so sensitive to sunlight - always wore a brimmed hat and then it was still a problem. His opthalmologist did not use drops as they said he was dilated enough already, so I think your doc was just lazy and rigid in his/her thinking. My daughter who is only a year older than her brother never had this dilated eye problem. I don't believe it is soooo normal like they told you. We just learned that my son has a mtDNA mutation for LHON - Leber Heredity Optic Neuropathy. He has a secondary mutation, but since he also has the diagnosis of autism, the geneticist is sure there is another mutation, but one they don't know how to find at this time. There are other symptoms besides visual that go along with this diagnosis and my family has ALL of those. As well as other visual glitches, but not the central blindness that usually occurs in LHON. My daughter and I both have large optic nerves/disks/something and a number of visual roblems that we compensate for. My daughter has actually been in vision tx before we were aware of any of this. My doc wondered if my visual problems were related to MS and tested me some for this, but came up negative. This (mito) is all new to us, so not sure how to explain. Don't visual complications go along with many mito conditions? Carnitine improved his dilated pupils, which occasionally were not the same size either for short periods, improved his EEG, and he has only had two days of peripheral neuropathy (was a big issue before that) since being on it also. cara mom of , age 8 Re: Dilated Pupils > After reading all your responses I am very frustrated with our > opthamologist and his office staff. Several of Ronan's therapists > noticed that his pupils are very dialated. One therapist suggested > a " functional vision exam " (not performed by a Doctor, but a special > therapist) and we also arranaged for an Opthamologist appiontment. > Turned out both exams were within a few days of each other. When we > went to the opthmologist an assistant came in to do a primary exam > and put in dilating drops. Before she put in the drops I mentioned > that his therapists thought his eyes were very dialated. The > assistant looked kind of annoyed and said that young children often > had very dialated eyes (Ronan is 2yrs). The opthamologist said the > same. Stupid thing is , ALL Ronan's therapists (OT , PT, Speech and > visual) ONLY deal with children and most of them only work with > children between the ages of 3 and 5 years! Don't you think they > would have seen enough kids to notice if one was a bit different that > the norm! I am glad I have read all these other posts. Ronan has > some symptoms of dysautonomia so perhaps I can chalk this up to that > (although the visual specialist also mentioned Cortical Visual > Impairment, his optic nerves are normal). I am going to try some > sunglasses because he is light sensative as well. > > Take Care, > > > > > Please contact mito-owner with any problems or questions. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2002 Report Share Posted March 19, 2002 Hello. I am brand new to the list. My son had extremely dilated eyes until going on L-Carnitine a year and half ago. He was so sensitive to sunlight - always wore a brimmed hat and then it was still a problem. His opthalmologist did not use drops as they said he was dilated enough already, so I think your doc was just lazy and rigid in his/her thinking. My daughter who is only a year older than her brother never had this dilated eye problem. I don't believe it is soooo normal like they told you. We just learned that my son has a mtDNA mutation for LHON - Leber Heredity Optic Neuropathy. He has a secondary mutation, but since he also has the diagnosis of autism, the geneticist is sure there is another mutation, but one they don't know how to find at this time. There are other symptoms besides visual that go along with this diagnosis and my family has ALL of those. As well as other visual glitches, but not the central blindness that usually occurs in LHON. My daughter and I both have large optic nerves/disks/something and a number of visual roblems that we compensate for. My daughter has actually been in vision tx before we were aware of any of this. My doc wondered if my visual problems were related to MS and tested me some for this, but came up negative. This (mito) is all new to us, so not sure how to explain. Don't visual complications go along with many mito conditions? Carnitine improved his dilated pupils, which occasionally were not the same size either for short periods, improved his EEG, and he has only had two days of peripheral neuropathy (was a big issue before that) since being on it also. cara mom of , age 8 Re: Dilated Pupils > After reading all your responses I am very frustrated with our > opthamologist and his office staff. Several of Ronan's therapists > noticed that his pupils are very dialated. One therapist suggested > a " functional vision exam " (not performed by a Doctor, but a special > therapist) and we also arranaged for an Opthamologist appiontment. > Turned out both exams were within a few days of each other. When we > went to the opthmologist an assistant came in to do a primary exam > and put in dilating drops. Before she put in the drops I mentioned > that his therapists thought his eyes were very dialated. The > assistant looked kind of annoyed and said that young children often > had very dialated eyes (Ronan is 2yrs). The opthamologist said the > same. Stupid thing is , ALL Ronan's therapists (OT , PT, Speech and > visual) ONLY deal with children and most of them only work with > children between the ages of 3 and 5 years! Don't you think they > would have seen enough kids to notice if one was a bit different that > the norm! I am glad I have read all these other posts. Ronan has > some symptoms of dysautonomia so perhaps I can chalk this up to that > (although the visual specialist also mentioned Cortical Visual > Impairment, his optic nerves are normal). I am going to try some > sunglasses because he is light sensative as well. > > Take Care, > > > > > Please contact mito-owner with any problems or questions. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2002 Report Share Posted March 19, 2002 : Are you seeing an opthomologist that specializes in children? Leah sees one in Madison. I guess a question to pose would be this...if it is normal in children to have dilated eyes, how dilated are they and is it everyday they are dilated or does it change some days. Then ask the therpists with the dilation they are noticing with Ronan how bad do they feel it is and could this be a problem with his light sensative? I'm sure it is because I remember when I get my eyes dilated how much brighter every thing is and also not to compare; but we have a cat with a vision problem and we thought he couldn't see very well because his eyes were so dilated during the day and we felt he was compensating by trying to let in more light to be able to see his surroundings better. Leah also has this computer test where they put electrodes on her eye and she looks at a tv screen with wavy lines and such (but don't know with this type of test if it would produce any seizures for some kids) and they can tell me where she can see visually meaning far sighted or near sighted. Right now Leah is at 20/50 with both eyes seeing together and 20/60 each eye separately (far sighted). So just a few questions for you. good luck with finding a doctor who will truly listen to you and understand Ronan's needs. May be you need your therapists to write a letter stating their concerns. A bummer that they would listen to a therapist over a parent but some times that's how it goes. N. mom to Leah ronanh2001 wrote: > After reading all your responses I am very frustrated with our > opthamologist and his office staff. Several of Ronan's therapists > noticed that his pupils are very dialated. One therapist suggested > a " functional vision exam " (not performed by a Doctor, but a special > therapist) and we also arranaged for an Opthamologist appiontment. > Turned out both exams were within a few days of each other. When we > went to the opthmologist an assistant came in to do a primary exam > and put in dilating drops. Before she put in the drops I mentioned > that his therapists thought his eyes were very dialated. The > assistant looked kind of annoyed and said that young children often > had very dialated eyes (Ronan is 2yrs). The opthamologist said the > same. Stupid thing is , ALL Ronan's therapists (OT , PT, Speech and > visual) ONLY deal with children and most of them only work with > children between the ages of 3 and 5 years! Don't you think they > would have seen enough kids to notice if one was a bit different that > the norm! I am glad I have read all these other posts. Ronan has > some symptoms of dysautonomia so perhaps I can chalk this up to that > (although the visual specialist also mentioned Cortical Visual > Impairment, his optic nerves are normal). I am going to try some > sunglasses because he is light sensative as well. > > Take Care, > > > > Please contact mito-owner with any problems or questions. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2002 Report Share Posted March 19, 2002 Cara, Welcome to the list. You are welcomed by a great group of people who you can ask anything off, vent and cry to and all here understand. Although we all wish we did not have to be part of this list, we are here. So let us know if we can help you. If you ask something and dont get a response, ask again cause some might have missed your post. Believe me someone here will know an answer. I continue to learn from the great people here everyday. They are such wonderful support. Tell us about your story when you get time. I have an eleven year old daughter with ito complex 1 & 3 Look forward to hearing from you again! Horsley Alabama Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2002 Report Share Posted March 19, 2002 Cara, Welcome to the list. You are welcomed by a great group of people who you can ask anything off, vent and cry to and all here understand. Although we all wish we did not have to be part of this list, we are here. So let us know if we can help you. If you ask something and dont get a response, ask again cause some might have missed your post. Believe me someone here will know an answer. I continue to learn from the great people here everyday. They are such wonderful support. Tell us about your story when you get time. I have an eleven year old daughter with ito complex 1 & 3 Look forward to hearing from you again! Horsley Alabama Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2002 Report Share Posted March 19, 2002 Cara, Welcome to the list. You are welcomed by a great group of people who you can ask anything off, vent and cry to and all here understand. Although we all wish we did not have to be part of this list, we are here. So let us know if we can help you. If you ask something and dont get a response, ask again cause some might have missed your post. Believe me someone here will know an answer. I continue to learn from the great people here everyday. They are such wonderful support. Tell us about your story when you get time. I have an eleven year old daughter with ito complex 1 & 3 Look forward to hearing from you again! Horsley Alabama Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2002 Report Share Posted March 19, 2002 , I thought I'd jump in when you said he was light sensitive. My Jill has Reninitis Pigmentosa and is very light sensitive and has dilated pupils at times and when they react to light, they react slower than normal. We have found a type of lens made by the Corning company that are good. They are dark orange normally and will turn almost black looking when Jill goes outside. The thing about these glasses is that they seem to work faster than other transitional glasses so it's easier on her eyes. Jill wears these when she is outside and wears a slightly tinted pair inside. We too had trouble with an ophthalmologist when she was little. The woman just did not want to believe me when I said something was wrong. We switched docs and found another more willing to do the tests needed to find out what was wrong. If there is any chance you can have him seen by a pediatric ophthalmologist it might be worth it. Just my two cents worth. Re: Dilated Pupils > After reading all your responses I am very frustrated with our > opthamologist and his office staff. Several of Ronan's therapists > noticed that his pupils are very dialated. One therapist suggested > a " functional vision exam " (not performed by a Doctor, but a special > therapist) and we also arranaged for an Opthamologist appiontment. > Turned out both exams were within a few days of each other. When we > went to the opthmologist an assistant came in to do a primary exam > and put in dilating drops. Before she put in the drops I mentioned > that his therapists thought his eyes were very dialated. The > assistant looked kind of annoyed and said that young children often > had very dialated eyes (Ronan is 2yrs). The opthamologist said the > same. Stupid thing is , ALL Ronan's therapists (OT , PT, Speech and > visual) ONLY deal with children and most of them only work with > children between the ages of 3 and 5 years! Don't you think they > would have seen enough kids to notice if one was a bit different that > the norm! I am glad I have read all these other posts. Ronan has > some symptoms of dysautonomia so perhaps I can chalk this up to that > (although the visual specialist also mentioned Cortical Visual > Impairment, his optic nerves are normal). I am going to try some > sunglasses because he is light sensative as well. > > Take Care, > > > > > Please contact mito-owner with any problems or questions. > > Quote Link to comment Share on other sites More sharing options...
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