Guest guest Posted July 2, 2004 Report Share Posted July 2, 2004 Kim I have two thoughts here... One is possibly pain...with the irritablity I would suspect that. If you have an agreeable doc you might ask for something like Neurontin which helps with pain, motility, siezures (which could explain something if they are frontal lobe ones--you never could see 's like traditional ones...but we saw behavior) and mood...so you might want to give it a try and see if you get any results. The other thing is many of the mito kids fall under the autism spectrum disorder category. There is even a seperate yahoogroup for it. High Functioning Austim and Aspergers generally have an onset at 2.5 or so, so it could be that. I hope its somthing she snaps out of quickly...hang in there mom! (ps...if you have any other questions, make sure and put my name in the title since I dont' get to read everything anymore) deb...mom to three great adopted kids... (07.04.96-05.26.03) with Mitochondrial Disease, Gaige age 5 with High Functioning Autism & dysfluency and Bliss age 3 with very very mild Cerebral Palsy. www.LifeofLoveProject.orgwww.HeartLiftersGallery.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2004 Report Share Posted July 2, 2004 Kim, You did not say how old is. But sounds to me like the regression alot of us see with kids on the autism spectrum or sensory integration problems usually at around 16 months old or so. Don't mean to scare you but that is usually what most parents say that there is regression and appears deaf yet we knew they could hear other irritating things in the house like the range fan. You should get her evaluated by a developmental pediatrician if you can find one and speech and occupational therapy. Wish someone told me when I saw all of this happening to my son 13 years ago. He was on long term antibiotics for ear infection and then had tubes put in and just regressed terribly when he was 17 months old. He has probable mito as cause with high lactate acid levels that we realized once we looked back through his medical records. Well... guess she must be older if she colored for that long. Work on trying to get eye contact back. Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2004 Report Share Posted July 2, 2004 has stopped talking recently and we are trying to figure out what is going on. I should say that has chosen not to talk anymore as I know she can. She has also recently started being very closed. By this I mean, she usually doesn't want to be spoken to or have anyone near her. If she is in one of her moods, she screams at the top of her lungs until you go away. She also ignores me when I am trying to talk to her. She just looks down and acts like she is ignoring me. (I know her hearing is okay as she perks up as soon as she hears something she likes) This is odd as she was always the outgoing one of the two and started talking before Lindsey. Nowadays, Lindsey is talking non-stop and more outgoing. One more thing about is she will sit and do one activity for a long period of time. Right now, she is coloring and has been non-stop for over an hour. Other times, she will sit glued to the TV. She would sit there all day if I would let her. I guess my question is, has this happened to any of you? What could this be? Thanks for any advice. Kim - Mom to and Lindsey (2 1/2) Partial Complex I Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2004 Report Share Posted July 2, 2004 I am sorry that she is having problems lately. I am sure this adds to the stress load and worries you. I don't know much about autism but could this be a possibility? Some of the symptoms you mention sound like it. You might want to talk to your doctors about it. It could also be a phase she is going through. Hopefully she will snap out of it soon. How long has she been doing it? Is there any connection to seizure activity at all? Sorry I am very little help, but I am concerned along with you. Let me know if I can do anything. Darla Speech Question has stopped talking recently and we are trying to figure out what is going on. I should say that has chosen not to talk anymore as I know she can. She has also recently started being very closed. By this I mean, she usually doesn't want to be spoken to or have anyone near her. If she is in one of her moods, she screams at the top of her lungs until you go away. She also ignores me when I am trying to talk to her. She just looks down and acts like she is ignoring me. (I know her hearing is okay as she perks up as soon as she hears something she likes) This is odd as she was always the outgoing one of the two and started talking before Lindsey. Nowadays, Lindsey is talking non-stop and more outgoing. One more thing about is she will sit and do one activity for a long period of time. Right now, she is coloring and has been non-stop for over an hour. Other times, she will sit glued to the TV. She would sit there all day if I would let her. I guess my question is, has this happened to any of you? What could this be? Thanks for any advice.Kim - Mom to and Lindsey (2 1/2) Partial Complex I Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2004 Report Share Posted July 2, 2004 Kim, I am sorry that is having a rough time. Has she been sick recently? My son went through a similiar regression after having roseola just before his 4th birthday and vaccinations a few weeks later at his 4 year check-up. At the time he didn't have a mito diagnosis, and he was diagnosed with atypical autism (because of the late onset and mild presentation). He wasn't diagnosed with mito until 5 years later. The behaviors that you mentioned sound so much like Evan's regression. He became less talkative, interacted less, and tantrumed more. He didn't quit talking, he just quit communicating and having give and take conversations. He even had a compulsion to draw. I know that the temporal lobe is important in language and personal social interaction. Also, hypergraphia (a tendency toward compulsive writing) has been reported in temporal lobe disorders. I would have have an EEG to look for temporal lobe activity. I hope that things turn around quickly-- Take care, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2004 Report Share Posted July 3, 2004 I know there is some research coming up involving mito and autism,if anyone is interested let me know. Jill, scad, Mom of Matt, scad, Zach,scad, Sara, carrier and my husband ,carrier Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2004 Report Share Posted July 3, 2004 My son did this at about age 2.5. We found out later he has auditory neuropathy. The symptoms look like autism or CAPD, because the child seems to hear but can't understand or doesn't respond to speech. My son got a cochlear implant last year and is doing fantastic. See if your child can get an ABR. -----Original Message-----From: knovy4@... Sent: Friday, July 02, 2004 4:54 PMTo: Mito Subject: Speech Question has stopped talking recently and we are trying to figure out what is going on. I should say that has chosen not to talk anymore as I know she can. She has also recently started being very closed. By this I mean, she usually doesn't want to be spoken to or have anyone near her. If she is in one of her moods, she screams at the top of her lungs until you go away. She also ignores me when I am trying to talk to her. She just looks down and acts like she is ignoring me. (I know her hearing is okay as she perks up as soon as she hears something she likes) This is odd as she was always the outgoing one of the two and started talking before Lindsey. Nowadays, Lindsey is talking non-stop and more outgoing. One more thing about is she will sit and do one activity for a long period of time. Right now, she is coloring and has been non-stop for over an hour. Other times, she will sit glued to the TV. She would sit there all day if I would let her. I guess my question is, has this happened to any of you? What could this be? Thanks for any advice.Kim - Mom to and Lindsey (2 1/2) Partial Complex IPlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2004 Report Share Posted July 3, 2004 Kim, Have you had her checked by a developmental specialist? It sounds like she is showing some autism signs. This is not uncommon at all with mito/met disorders. Some children don't start to present with autism until 2-3 yr. old. morgan was the same way when she started. She has diagnosed with PDD-NOS (pervasive developmental disorder not otherwise specified). She is very loving so we are lucky there. She has fits and is very strong minded. Sometimes she does not want to be bothered and will let you know. she can also sit and watch TV for hours-totally engrossed. My first concerns were loss of speech and my second concern was her ignoring-selective hearing we call it. If there is something she wants she hears just fine-other times you can not get her to turn her head. I would check out autism online and see if the signs fit and if they do get in her for an eval! Any other questions let me know. Dawn Quote Link to comment Share on other sites More sharing options...
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