Guest guest Posted April 21, 2003 Report Share Posted April 21, 2003 Patty, My daughter also has eye problems. She has ptosis and one morning she woke up and her left eye was totally turned inward. She has always rubbed her eyes a lot and has trouble with receptive language so it is hard to assess what she is seeing..........but, what we have come up with is a visual field loss in the right outer aspect in her right field of vision, right eye. She also has been losing her depth perception and the vision in general is getting worse. We were origionally told that she has a 4th nerve palsy, but after they eye turning inward she was reassessed and they are just atributing thing to her mito in general. She is now in bifocals which seem to be helping some, but she still runs into a lot of things and rubs her eyes a lot. We see an opthamologist at the University of Chicago, but have also been seen at Riley Children's Hospital, Mayo clinic, and locally. In the fall we may try to add some vision therapy to see if that helps at all. Holly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2003 Report Share Posted April 22, 2003 ----- Hi Patty, also has ptosis, ( I think a lot of adult mito do also..) s meds do great things for that, but it still shows up when he is tired, also developed photosensitivity last year, his eye exam was good, so we just deal with it, turn off lamps that are too bright, good sun glasses, and VERY expensive goggles for the snow, as if he gets too much sunlight it causes blinding migraines ( this past year) We still get the annual specialist kids hosp. eye exam, just to be on the safe side as they feel he has K.S. and his " missing symptom " is scattered pigmentation.... Good luck, Take care, .... Jillian, s mom, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2003 Report Share Posted April 22, 2003 Patty: Leah has nystagmus and spasmus nutans (not sure if spelled correctly). We have always seen a pediatric eye doctor. We see Dr. France in Madison. They do a test with this computer to see where she sees visually and she is at 20/50 farsighted. They also dialate her eyes every year to get a good look inside. She has small optic nerves; which is par for the course of this disease. I believe their is a good ped. eye doctor in Green Bay. When she was first seen here in Appleton they said we could either go to Green Bay or Madison. We chose Madison just because all of Leah's specialists are there. It's just always nice to get that second opinion and get your questions answered as how to help him better with his vision. One thing 's OT suggested to give his eyes a break so he wouldn't get aheadache is to put his hands over his eyes like you cross your hands over each other and then sort of rest his head, too. May be Josh needs to give his eyes a break for a few minutes twice a day or when he feels the blurriness come on. Nerenhausen mom to Leah cows1988 wrote: > I was woundering if anyone's child has eye problems? Our son Josh > has ptosis, PEO, and latley has been complaining of his eye's > hurting, and that thing's are blurry. We go back to Childrens in > Milwaukee on thursday to have his eye's looked at again. He was just > their in November and the Dr. said it could be nothing, or the start > of something, but it has'nt gotten any better. We made him a desk > size potdium to use at school and at home it has helped alot but now > this, any help would be greatly appreciated. Thank you > He also had a echocardiogram done 1 week ago and it came back > within normal, good new's. > > Patty Kraynik > Josh--- Mito Myopathy age 7 > > > Please contact mito-owner with any problems or questions. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2003 Report Share Posted April 22, 2003 Jillian, What is scattered pigmentation? Re: Eye problems > > ----- Hi Patty, > also has ptosis, ( I think a lot of adult mito do also..) s > meds do great things for that, but it still shows up when he is tired, > also developed photosensitivity last year, his eye exam was good, so > we just deal with it, turn off lamps that are too bright, good sun glasses, > and VERY expensive goggles for the snow, as if he gets too much sunlight it > causes blinding migraines ( this past year) > We still get the annual specialist kids hosp. eye exam, just to be on the > safe side as they feel he has K.S. and his " missing symptom " is scattered > pigmentation.... > Good luck, Take care, .... Jillian, s mom, > > > > > Please contact mito-owner with any problems or questions. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2003 Report Share Posted April 23, 2003 Patty My has ptosis, nystagmus, strabismus, alternating esotropia and myopathy (farsightedness)...so yes eye problems are an issue...some kids have this as thier primary issue and some are even started on thier diagnostic process for mito after finding an eye problem. However, about the blurring and the pain...I know a few years ago, I was seeing 'floaties' and went to the opthomologist and he told me you can have migraines without having pain, so when I read this about your son, I would think this is possible. Next time it happens maybe you can try giving him some ibuprofen and seeing if it helps his eyes...would be a good thing to test before going to the doc so you can tell him. Its just a theory and I am not a doctor, but I play one on the internet! :::Grin::: deb...mom to 6.5 with Mitochondria Encephalomyopathy, Gaige 4 with Aspergers and Bliss 2 tomorrow, with very very Mild Cerebral Palsy and a Mild Hearing Impairment. Quote Link to comment Share on other sites More sharing options...
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