Guest guest Posted January 30, 2005 Report Share Posted January 30, 2005 Steph, Our oldest daughter has one pupil larger than the other. She has mito Complex 1 and probably a fatty acid oxidation disorder as well. She has encephalopathy and pigmentary retinopathy so we assumed in one way or the other they are related. She was seen by Neuro as well as Neuro-opthalmology for evaluation and they are just watching. She will be having further testing done to further evaluate the optic nerve for disease as well. Feel free to email me if you have further questions. Tammy- mom to Madelaine 7 1/2 and 5dsspearson wrote: Hi all,I don't post very often because it is rare that I have a question that someone else hasn't also had! But this time is I do. I have two kiddos with mito. My youngest was diagnosed with Complex I & IV through muscle biopsy. My oldest has started showing more signs in the last year so the docs are working on the assumption that he has mito as well. My question to everyone is about my oldest. Does anyone have experience with their mito kiddo having one pupil larger than the other? It has just been in the last couple of weeks that I have noticed he has one pupil that is larger than the other. I am wondering if this is mito related or not. I have been unsuccessful in finding any specific information saying that this can happen as part of a mito disease. He has had no other symptoms: headache, blurred vision etc. He hasn't complained about his eye at all although I have noticed him rubbing it quite often. We have seen an opthamologist who says the structure of the eye looks good. We go back next week to have the pupil looked at again. I have not taken him to the neuro yet. Without any info pointing to the probability that this is mito related and the fact he has no other symptoms, I'm afraid i will have a hard time getting a CT or MRI done.Sorry this was so lenghty! i would appreciate any and all input!Steph-mom to Seth(7) and Sydnie(3 1/2) Complex I & IVPlease contact mito-owner with any problems or questions. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2005 Report Share Posted January 30, 2005 Steph, Our oldest daughter has one pupil larger than the other. She has mito Complex 1 and probably a fatty acid oxidation disorder as well. She has encephalopathy and pigmentary retinopathy so we assumed in one way or the other they are related. She was seen by Neuro as well as Neuro-opthalmology for evaluation and they are just watching. She will be having further testing done to further evaluate the optic nerve for disease as well. Feel free to email me if you have further questions. Tammy- mom to Madelaine 7 1/2 and 5dsspearson wrote: Hi all,I don't post very often because it is rare that I have a question that someone else hasn't also had! But this time is I do. I have two kiddos with mito. My youngest was diagnosed with Complex I & IV through muscle biopsy. My oldest has started showing more signs in the last year so the docs are working on the assumption that he has mito as well. My question to everyone is about my oldest. Does anyone have experience with their mito kiddo having one pupil larger than the other? It has just been in the last couple of weeks that I have noticed he has one pupil that is larger than the other. I am wondering if this is mito related or not. I have been unsuccessful in finding any specific information saying that this can happen as part of a mito disease. He has had no other symptoms: headache, blurred vision etc. He hasn't complained about his eye at all although I have noticed him rubbing it quite often. We have seen an opthamologist who says the structure of the eye looks good. We go back next week to have the pupil looked at again. I have not taken him to the neuro yet. Without any info pointing to the probability that this is mito related and the fact he has no other symptoms, I'm afraid i will have a hard time getting a CT or MRI done.Sorry this was so lenghty! i would appreciate any and all input!Steph-mom to Seth(7) and Sydnie(3 1/2) Complex I & IVPlease contact mito-owner with any problems or questions. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2005 Report Share Posted January 30, 2005 I would love to hear if anyone else can add anything to this question. My daughter who is 6 1/2 started having this problem in November. Her left eye will be overdialated and sometimes it comes with a headache sometimes it comes with no other symptoms (once it lasted for 10 days ). I keep being told that it is a migraine, I have to be honest I feel as if I have been blown off so many times about this, I have seen our pediatrician, optometrists and neurologist -- this is the first time I have been so upset and feel like no one is looking into what the problem is. I do have concerns that we have been told in other areas over her 6 years of life that when it comes to a muscle " if you don't use it, you will lose it " That seems to me what the eye muscle is doing. Sorry, I don't post very often but this is one area that I have been upset about. Thanks Patti p.s. my daughter has complex III deficiency Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2005 Report Share Posted January 30, 2005 I would love to hear if anyone else can add anything to this question. My daughter who is 6 1/2 started having this problem in November. Her left eye will be overdialated and sometimes it comes with a headache sometimes it comes with no other symptoms (once it lasted for 10 days ). I keep being told that it is a migraine, I have to be honest I feel as if I have been blown off so many times about this, I have seen our pediatrician, optometrists and neurologist -- this is the first time I have been so upset and feel like no one is looking into what the problem is. I do have concerns that we have been told in other areas over her 6 years of life that when it comes to a muscle " if you don't use it, you will lose it " That seems to me what the eye muscle is doing. Sorry, I don't post very often but this is one area that I have been upset about. Thanks Patti p.s. my daughter has complex III deficiency Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2005 Report Share Posted January 31, 2005 My daughter has this also. Her left pupil is always more dilated than the right. It is more noticeable after seizures. She has been dx'd with nearsightedness & astigmatism, worse in the right eye, by a ped opthomalogist. I can't remember if he or her neuro had any comments about this. Chelsea can't talk, so I have no clue if she has a headache or blurred vision. Chelsea was previously thought to have an unknown mito disease, but we now know she has the gene mutation for Rett Syndrome, a pervasive neurological disorder. She has many neurological symptoms, including autonomic dysfunction. It is still unknown whether she has mito issues secondary to RS or not. I found a fairly recent photo which show her eyes well, you can also see the left eye is a little 'off'. . . e, Chelsea's mom, Atypical Rett Syndrome (FKA nonspecific mito) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2005 Report Share Posted January 31, 2005 My daughter has this also. Her left pupil is always more dilated than the right. It is more noticeable after seizures. She has been dx'd with nearsightedness & astigmatism, worse in the right eye, by a ped opthomalogist. I can't remember if he or her neuro had any comments about this. Chelsea can't talk, so I have no clue if she has a headache or blurred vision. Chelsea was previously thought to have an unknown mito disease, but we now know she has the gene mutation for Rett Syndrome, a pervasive neurological disorder. She has many neurological symptoms, including autonomic dysfunction. It is still unknown whether she has mito issues secondary to RS or not. I found a fairly recent photo which show her eyes well, you can also see the left eye is a little 'off'. . . e, Chelsea's mom, Atypical Rett Syndrome (FKA nonspecific mito) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2005 Report Share Posted January 31, 2005 Hi, My daughter Complex I,II,III FAOD, Has this when she gets a Migrane there is nothing that can be done MRI, EEg and everything else has come back normal Neuro suggested giving Motrin to help relieve that pain from Headache. Normally lasts a day. She gets them when stressed or growing when her body is most weak. Sorry not much more help Ange -------------- Original message -------------- > > > Hi all, > > I don't post very often because it is rare that I have a question > that someone else hasn't also had! But this time is I do. I have two > kiddos with mito. My youngest was diagnosed with Complex I & IV > through muscle biopsy. My oldest has started showing more signs in > the last year so the docs are working on the assumption that he has > mito as well. My question to everyone is about my oldest. Does > anyone have experience with their mito kiddo having one pupil larger > than the other? It has just been in the last couple of weeks that I > have noticed he has one pupil that is larger than the other. I am > wondering if this is mito related or not. I have been unsuccessful > in finding any specific information saying that this can happen as > part of a mito disease. He has had no other symptoms: headache, > blurred vision etc. He hasn't complained about his eye at all > although I have noticed him rubbing it quite often. We have seen an > opthamologist who says the structure of the eye looks good. We go > back next week to have the pupil looked at again. I have not taken > him to the neuro yet. Without any info pointing to the probability > that this is mito related and the fact he has no other symptoms, I'm > afraid i will have a hard time getting a CT or MRI done. > > Sorry this was so lenghty! i would appreciate any and all input! > > Steph-mom to Seth(7) and Sydnie(3 1/2) Complex I & IV > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2005 Report Share Posted January 31, 2005 Hi, My daughter Complex I,II,III FAOD, Has this when she gets a Migrane there is nothing that can be done MRI, EEg and everything else has come back normal Neuro suggested giving Motrin to help relieve that pain from Headache. Normally lasts a day. She gets them when stressed or growing when her body is most weak. Sorry not much more help Ange -------------- Original message -------------- > > > Hi all, > > I don't post very often because it is rare that I have a question > that someone else hasn't also had! But this time is I do. I have two > kiddos with mito. My youngest was diagnosed with Complex I & IV > through muscle biopsy. My oldest has started showing more signs in > the last year so the docs are working on the assumption that he has > mito as well. My question to everyone is about my oldest. Does > anyone have experience with their mito kiddo having one pupil larger > than the other? It has just been in the last couple of weeks that I > have noticed he has one pupil that is larger than the other. I am > wondering if this is mito related or not. I have been unsuccessful > in finding any specific information saying that this can happen as > part of a mito disease. He has had no other symptoms: headache, > blurred vision etc. He hasn't complained about his eye at all > although I have noticed him rubbing it quite often. We have seen an > opthamologist who says the structure of the eye looks good. We go > back next week to have the pupil looked at again. I have not taken > him to the neuro yet. Without any info pointing to the probability > that this is mito related and the fact he has no other symptoms, I'm > afraid i will have a hard time getting a CT or MRI done. > > Sorry this was so lenghty! i would appreciate any and all input! > > Steph-mom to Seth(7) and Sydnie(3 1/2) Complex I & IV > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2005 Report Share Posted January 31, 2005 In a message dated 1/31/2005 6:45:48 AM Eastern Standard Time, Mito writes: We have seen an opthamologist who says the structure of the eye looks good. We go back next week to have the pupil looked at again. Hi Steph, One of my pupils is larger than the other due to Horner's syndrome resulting from a central line placement that damaged the nerve to one of my eyes. I have alot of autonomic dysfunction as part of the mito and my opthalmologist says this can cause unequal pupils, as well. When I am not feeling well, sometimes my vision in one eye will blur which he also thinks is due to this, as well. Hope this helps. Malisa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2005 Report Share Posted January 31, 2005 In a message dated 1/31/2005 6:45:48 AM Eastern Standard Time, Mito writes: We have seen an opthamologist who says the structure of the eye looks good. We go back next week to have the pupil looked at again. Hi Steph, One of my pupils is larger than the other due to Horner's syndrome resulting from a central line placement that damaged the nerve to one of my eyes. I have alot of autonomic dysfunction as part of the mito and my opthalmologist says this can cause unequal pupils, as well. When I am not feeling well, sometimes my vision in one eye will blur which he also thinks is due to this, as well. Hope this helps. Malisa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2005 Report Share Posted February 1, 2005 > > Hi all, > > I don't post very often because it is rare that I have a question > that someone else hasn't also had! But this time is I do. I have two > kiddos with mito. My youngest was diagnosed with Complex I & IV > through muscle biopsy. My oldest has started showing more signs in > the last year so the docs are working on the assumption that he has > mito as well. My question to everyone is about my oldest. Does > anyone have experience with their mito kiddo having one pupil larger > than the other? It has just been in the last couple of weeks that I > have noticed he has one pupil that is larger than the other. I am > wondering if this is mito related or not. I have been unsuccessful > in finding any specific information saying that this can happen as > part of a mito disease. He has had no other symptoms: headache, > blurred vision etc. He hasn't complained about his eye at all > although I have noticed him rubbing it quite often. We have seen an > opthamologist who says the structure of the eye looks good. We go > back next week to have the pupil looked at again. I have not taken > him to the neuro yet. Without any info pointing to the probability > that this is mito related and the fact he has no other symptoms, I'm > afraid i will have a hard time getting a CT or MRI done. > > Sorry this was so lenghty! i would appreciate any and all input! > > Steph-mom to Seth(7) and Sydnie(3 1/2) Complex I & IV Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2005 Report Share Posted February 1, 2005 > > Hi all, > > I don't post very often because it is rare that I have a question > that someone else hasn't also had! But this time is I do. I have two > kiddos with mito. My youngest was diagnosed with Complex I & IV > through muscle biopsy. My oldest has started showing more signs in > the last year so the docs are working on the assumption that he has > mito as well. My question to everyone is about my oldest. Does > anyone have experience with their mito kiddo having one pupil larger > than the other? It has just been in the last couple of weeks that I > have noticed he has one pupil that is larger than the other. I am > wondering if this is mito related or not. I have been unsuccessful > in finding any specific information saying that this can happen as > part of a mito disease. He has had no other symptoms: headache, > blurred vision etc. He hasn't complained about his eye at all > although I have noticed him rubbing it quite often. We have seen an > opthamologist who says the structure of the eye looks good. We go > back next week to have the pupil looked at again. I have not taken > him to the neuro yet. Without any info pointing to the probability > that this is mito related and the fact he has no other symptoms, I'm > afraid i will have a hard time getting a CT or MRI done. > > Sorry this was so lenghty! i would appreciate any and all input! > > Steph-mom to Seth(7) and Sydnie(3 1/2) Complex I & IV Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2005 Report Share Posted February 1, 2005 I have a neice with mito. I also have 1 pupil that is larger then the other and was diagnosed with psedutumor-cerebri because of this. All it took was a spinal tap and the diagnosis. I do not have a mito disorder. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2005 Report Share Posted February 1, 2005 I have a neice with mito. I also have 1 pupil that is larger then the other and was diagnosed with psedutumor-cerebri because of this. All it took was a spinal tap and the diagnosis. I do not have a mito disorder. Quote Link to comment Share on other sites More sharing options...
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