Guest guest Posted January 16, 1996 Report Share Posted January 16, 1996 My daughter Amy described something very similar to your description of neck pain yesterday. She also had a slight swelling in the neck area where the pain was felt. Mitooggo also mentions her daughter Kira as having neuro-vascular dystrophy and MIDS (Maternally Inherited Dysautonomia Syndrome). Amy has both of these as well. Is Kiro in Dr Boles study by any chance.? This is were we got the MIDS diagnosis from. Thanks, . Re: my daughter Anne, This sounds very similar to what Kira experiences when she is having NVD flair up. (Nuro Vascular Dystrophy) Usually though there is some swelling associated with it either in her neck or her arms not always though. It is very very painful and if she moves she is scremaing in pain. I have a question, Kira's area will get hot to the touch. The area that is the culprit area that has set off the NVD. Did she have any area of her skin that was hotter to the touch that you noticed? I sure hope they figure out what is up. I know when my kids are having these flair ups, they are miserable and my Son has had to have narcotics at times to knock the pain.We are thinking about you guys!HUGS! O and crew - Kira,, and Krisalynn Mitochondrial Myopathy-MIDS Maternally Inherited Dysautonomia- NVD ( Nuro Vascular Dystrophy) and dad EnriqueVisit our web page: WWW. caringbridge.org/ca/mitooggoHelp support my sister in her new business at : Come and see what's NEW! http://www.youravon.com/elleenmiller Your AVON representative (Sign in passcode: ElleensAVON if you are signing in for the first time :-)Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2004 Report Share Posted July 26, 2004 I am sure it can be many things, but my first thought was migranes. It took us a few weeks to figure out that our 2 year old daughter (mito) was having migranes. She cannot talk, but she was having such pain that she would not move at all. She would just sit on the couch and wimper in pain. Migranes are very typical in mito, also. For our daughter she takes Periactin (prescription) twice a day and it really seems to help. We also have another daughter (non mito) who also suffers from migranes, with similar symptoms to your daughter. For her we associate them with stress (she has ADD and has very intense emotions.) Best wishes, I hope she feels better soon. ,Mommy to (9), (7), Bre-Anne (6), Grace (2) and our newest arrival is due Sept. 20thFor the latest baby info, and to see our family check out:www.BabyCountDown.com?baby=4007 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2004 Report Share Posted July 26, 2004 Anne, This sounds very similar to what Kira experiences when she is having NVD flair up. (Nuro Vascular Dystrophy) Usually though there is some swelling associated with it either in her neck or her arms not always though. It is very very painful and if she moves she is scremaing in pain. I have a question, Kira's area will get hot to the touch. The area that is the culprit area that has set off the NVD. Did she have any area of her skin that was hotter to the touch that you noticed? I sure hope they figure out what is up. I know when my kids are having these flair ups, they are miserable and my Son has had to have narcotics at times to knock the pain. We are thinking about you guys! HUGS! O and crew - Kira,, and Krisalynn Mitochondrial Myopathy-MIDS Maternally Inherited Dysautonomia- NVD ( Nuro Vascular Dystrophy) and dad Enrique Visit our web page: WWW. caringbridge.org/ca/mitooggo Help support my sister in her new business at : Come and see what's NEW! http://www.youravon.com/elleenmiller Your AVON representative (Sign in passcode: ElleensAVON if you are signing in for the first time :-) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2004 Report Share Posted July 26, 2004 My little daughter is 11 years old and although she had many symptoms of mito her first 3 years old she has been a perfectly healthy child for the last 8 years. her brothers have a profound presentation of mito and their diagnosis is complex 1 and 4 defect in oxphos. her 17 yr old sister presented at age 14 and has a mild but definate form of the disease which is slowly progressing. please tell me if anyone has ever heard of this. this morning she woke up and could not move her head or arms. she said her head felt huge and very big and heavy and it hurt terribly. her neck hurt very badly and when she tried to use her arms to get herself out of bed she had excruciating pain. she started screaming for me to come for her because she literally could not get out of bed. this is a child who stays at school when she is sick without telling anyone because she does not want to worry me so if she is screaming for help something is very wrong. I got her up and she seemed fine neurologically in that she could walk. the inability to move her arms was pain related...if she moved them her neck and head hurt. if she yawned or talked her neck hurt. she did not have a fever and looked way too good for meningitis.....and the doctor agreed with me later when she saw her. called the doctor and they said give her ibuprofen. if she is better then bring her in at 10 am - if she is not then take her to the ER. She did get better in that she could move her arms without pain but still had terrible neck pain and could not yawn or cough. At the pediatricians they could not find anything wrong - no swollen anything or tight muscles. The pediatrician said she was very concerned because the story was so strange and not the typical story of someone who slept on their neck wrong and had a crick in it in the morning. She ordered a cervical spine MRI to be done this week and quiet play only until then and to give ibuprofen around the clock. she said if it gets worse or happens again in the morning then she needs to go right in. she said she is very worried it is linked to the mito but has no idea how or what it could be. Does this sound like anything anyone has ever heard of or experienced? Annewww.caringbridge.org/wi/zachsam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2004 Report Share Posted July 27, 2004 -Anne, does something like this when she has dystonia. In her case, it's her right neck and side. She can't get out of the position. She's too young to tell me if it hurts but it sure looks uncomfortable. In 's case, Klonopin does something to the neurotransmitters that are causing a problem and it's like turning off a switch. When she outgrows the med, it comes back full force, like you flipped a switch again. Did your daughter get better gradually or was it a sudden recovery? I think that would be important information for the doctors. I' praying that this was a one time thing for her. Heidi, 's Mom -- In Mito , " Anne K Juhlmann " wrote: > My little daughter is 11 years old and although she had many symptoms of mito her first 3 years old she has been a perfectly healthy child for the last 8 years. > > her brothers have a profound presentation of mito and their diagnosis is complex 1 and 4 defect in oxphos. her 17 yr old sister presented at age 14 and has a mild but definate form of the disease which is slowly progressing. > > please tell me if anyone has ever heard of this. this morning she woke up and could not move her head or arms. she said her head felt huge and very big and heavy and it hurt terribly. her neck hurt very badly and when she tried to use her arms to get herself out of bed she had excruciating pain. she started screaming for me to come for her because she literally could not get out of bed. this is a child who stays at school when she is sick without telling anyone because she does not want to worry me so if she is screaming for help something is very wrong. > > I got her up and she seemed fine neurologically in that she could walk. the inability to move her arms was pain related...if she moved them her neck and head hurt. if she yawned or talked her neck hurt. she did not have a fever and looked way too good for meningitis.....and the doctor agreed with me later when she saw her. > > called the doctor and they said give her ibuprofen. if she is better then bring her in at 10 am - if she is not then take her to the ER. > > She did get better in that she could move her arms without pain but still had terrible neck pain and could not yawn or cough. > > At the pediatricians they could not find anything wrong - no swollen anything or tight muscles. The pediatrician said she was very concerned because the story was so strange and not the typical story of someone who slept on their neck wrong and had a crick in it in the morning. > > She ordered a cervical spine MRI to be done this week and quiet play only until then and to give ibuprofen around the clock. she said if it gets worse or happens again in the morning then she needs to go right in. she said she is very worried it is linked to the mito but has no idea how or what it could be. > > Does this sound like anything anyone has ever heard of or experienced? > > Anne > www.caringbridge.org/wi/zachsam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2004 Report Share Posted July 27, 2004 Dear Anne, I can't believe that happened! I am so sorry for her - and you... I don't have any experience with those symptoms (Ben has had mild neck pain but not to that degree). I know that when they have weird symptoms and symptoms the docs don't understand, I always blame the mito. I sure hope she's better today... Cindy Cruz Does this sound like anything anyone has ever heard of or experienced? Annewww.caringbridge.org/wi/zachsam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2004 Report Share Posted July 27, 2004 Hi, Anne - My daughter does something similar. Her right arm gets "frozen" in flexion, with her head turned to the left side. She is wide awake and screaming when this happens, and very alert. It seems to be excrutiatingly painful. is nonverbal, so she can't describe it for us. We have debated whether this is muscle spasm related to dystonia or spasticity (she has spastic CP) or a focal seizure - I have always voted for muscle spasm, because there is no change in mental status. She also takes a deep breath and calms a little when I tell her that I am getting the Valium. We treat these with Valium, which "melts" the spasm and allows full range of motion in 5 - 10 minutes. She has times when this happens somewhat frequently (a few times a month), or we can go months without an occurence. Kathy my daughter My little daughter is 11 years old and although she had many symptoms of mito her first 3 years old she has been a perfectly healthy child for the last 8 years. her brothers have a profound presentation of mito and their diagnosis is complex 1 and 4 defect in oxphos. her 17 yr old sister presented at age 14 and has a mild but definate form of the disease which is slowly progressing. please tell me if anyone has ever heard of this. this morning she woke up and could not move her head or arms. she said her head felt huge and very big and heavy and it hurt terribly. her neck hurt very badly and when she tried to use her arms to get herself out of bed she had excruciating pain. she started screaming for me to come for her because she literally could not get out of bed. this is a child who stays at school when she is sick without telling anyone because she does not want to worry me so if she is screaming for help something is very wrong. I got her up and she seemed fine neurologically in that she could walk. the inability to move her arms was pain related...if she moved them her neck and head hurt. if she yawned or talked her neck hurt. she did not have a fever and looked way too good for meningitis.....and the doctor agreed with me later when she saw her. called the doctor and they said give her ibuprofen. if she is better then bring her in at 10 am - if she is not then take her to the ER. She did get better in that she could move her arms without pain but still had terrible neck pain and could not yawn or cough. At the pediatricians they could not find anything wrong - no swollen anything or tight muscles. The pediatrician said she was very concerned because the story was so strange and not the typical story of someone who slept on their neck wrong and had a crick in it in the morning. She ordered a cervical spine MRI to be done this week and quiet play only until then and to give ibuprofen around the clock. she said if it gets worse or happens again in the morning then she needs to go right in. she said she is very worried it is linked to the mito but has no idea how or what it could be. Does this sound like anything anyone has ever heard of or experienced? Annewww.caringbridge.org/wi/zachsamPlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.