Guest guest Posted November 7, 2004 Report Share Posted November 7, 2004 Hi there wasn't a toddler when he was dealing with Mito but he did have some pain. We tried Neurontin and that helped a bunch. also carnitor if he isn't taking it already. It could be neuropathic pain (but I am not sure bengay would help that so it might not be). You might try neurontin...its helped a lot of mito kids with pain and would be my best suggestion. I think you are doing a great job to figure it out and remember, we always know our kids best. My 3 yr old who has mild CP is dealing with leg pain and spends a lot of time resting. We go to the park with friends once a week and aftre we are there 30-45 minutes she wants to go home and sit on the couch. Mind you, she is addicted to the swing and is sitting most of the time. So I am trying to solve my own mystery with this and am anxious to read the replies you will get. 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.comCrazy Lizzies!! PURSES! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2004 Report Share Posted November 7, 2004 Hi there wasn't a toddler when he was dealing with Mito but he did have some pain. We tried Neurontin and that helped a bunch. also carnitor if he isn't taking it already. It could be neuropathic pain (but I am not sure bengay would help that so it might not be). You might try neurontin...its helped a lot of mito kids with pain and would be my best suggestion. I think you are doing a great job to figure it out and remember, we always know our kids best. My 3 yr old who has mild CP is dealing with leg pain and spends a lot of time resting. We go to the park with friends once a week and aftre we are there 30-45 minutes she wants to go home and sit on the couch. Mind you, she is addicted to the swing and is sitting most of the time. So I am trying to solve my own mystery with this and am anxious to read the replies you will get. 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.comCrazy Lizzies!! PURSES! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2004 Report Share Posted November 7, 2004 Man, I remember those days of waiting for the results...did you see Shoffner then? About Carnitor... never had any off lab except some mild CPKs but everything else was always normal. The local metabolicist never could understand that...she often said as your dr that she dind't know why Shoffner and Korson wanted him on Carnitor when his carnitine levels were normal. She had quite the attitude with me--basically since she was not in charge (because she only had a couple of prior mito pts). She always questioned the diagnosis b/c she didn't make it. I feel pretty confident in saying that most of the well-known mito guys (this coming from hearing them speak at conference in 2002 and knowing patients of thiers too) that the theory on Carnitor is that it might not help, but it wont hurt either. They basically say its worth a try. Now, you can take that for whatever its worth to you. About Neurontin: the med does several things...helps with seizure, neuropathic pain and a few other things. Its not a PAIN med like morphine or even motrin...it works in a different way. I am sure you can do a search on it and read more. It has been in the news lately but I can't remember why...side effects to certain pts...taking it for totally different reasons than mito kids would need. I know its helped a lot of kids...and I know a couple it didn't help with. It was really a wonder drug for us. was never in big pain...just more like fatigue pain and also what I think was numbness and tingling...just because he never could tell us for sure but based on the same things you used to judge...we think that it what it was. does that help any? Please don't think I am trying to cram Pain meds down your throat...Neurontin really works in a very different way. deb...mom to three great kids and wife to one amazing guy!http://www.lifeofloveproject.org/http://www.heartliftersgallery.com/ Crazy Lizzies!! PURSES! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2004 Report Share Posted November 7, 2004 Man, I remember those days of waiting for the results...did you see Shoffner then? About Carnitor... never had any off lab except some mild CPKs but everything else was always normal. The local metabolicist never could understand that...she often said as your dr that she dind't know why Shoffner and Korson wanted him on Carnitor when his carnitine levels were normal. She had quite the attitude with me--basically since she was not in charge (because she only had a couple of prior mito pts). She always questioned the diagnosis b/c she didn't make it. I feel pretty confident in saying that most of the well-known mito guys (this coming from hearing them speak at conference in 2002 and knowing patients of thiers too) that the theory on Carnitor is that it might not help, but it wont hurt either. They basically say its worth a try. Now, you can take that for whatever its worth to you. About Neurontin: the med does several things...helps with seizure, neuropathic pain and a few other things. Its not a PAIN med like morphine or even motrin...it works in a different way. I am sure you can do a search on it and read more. It has been in the news lately but I can't remember why...side effects to certain pts...taking it for totally different reasons than mito kids would need. I know its helped a lot of kids...and I know a couple it didn't help with. It was really a wonder drug for us. was never in big pain...just more like fatigue pain and also what I think was numbness and tingling...just because he never could tell us for sure but based on the same things you used to judge...we think that it what it was. does that help any? Please don't think I am trying to cram Pain meds down your throat...Neurontin really works in a very different way. deb...mom to three great kids and wife to one amazing guy!http://www.lifeofloveproject.org/http://www.heartliftersgallery.com/ Crazy Lizzies!! PURSES! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2004 Report Share Posted November 7, 2004 is almost 2 and doesnt talk, so i cant even be sure of the problem, but i suspect his legs get sore. he will get up in the morning, and play for about an hour, afterwards he starts to fall more (his leg gives out under him basically), and he gets really grumpy.... He will literally drag me to his crib and ask to go in (he signs). I will put him in it, and he will play happily for up to an hour. then he will usually get up, eat, and go down for a nap around 1. hes usually up by 3, but around 4-430 he is falling and asking to go in his crib again. the predinner time 'rest' is usually only half an hour, but again, he is happy to just play in his crib. he will usually get up then, and stay up until 7, but periodically through the evening, he will sit down on the couch for up to half an hour (long time for a 2 year old) and read, or watch tv, or just cuddle. While i have nothing concrete to go on, my impression is that his legs hurt. he will rub the tops of his legs sometimes and whine, and the way he falls looks alot like weak muscles (though overall he is quite strong). we know his CK enzymes are elevated, so the doc said it could be that he is achey... We have been rubbing A535 (Ben-Gay?) on his legs, and he will literally sit still for 10 minutes or so to let us (again saying something for a 2 year old), and sometimes will actually bring me the tube and lift his pant legs up... anyone else deal with this? anything you found that helps in particular? we dont give him motrin or tylenol, unless he has a fever, or is in ALOT of pain, since he has quite frequent fevers, since we dont want him on it ALL the time. so were limited for pain relief... Thanks, Keely Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2004 Report Share Posted November 7, 2004 is almost 2 and doesnt talk, so i cant even be sure of the problem, but i suspect his legs get sore. he will get up in the morning, and play for about an hour, afterwards he starts to fall more (his leg gives out under him basically), and he gets really grumpy.... He will literally drag me to his crib and ask to go in (he signs). I will put him in it, and he will play happily for up to an hour. then he will usually get up, eat, and go down for a nap around 1. hes usually up by 3, but around 4-430 he is falling and asking to go in his crib again. the predinner time 'rest' is usually only half an hour, but again, he is happy to just play in his crib. he will usually get up then, and stay up until 7, but periodically through the evening, he will sit down on the couch for up to half an hour (long time for a 2 year old) and read, or watch tv, or just cuddle. While i have nothing concrete to go on, my impression is that his legs hurt. he will rub the tops of his legs sometimes and whine, and the way he falls looks alot like weak muscles (though overall he is quite strong). we know his CK enzymes are elevated, so the doc said it could be that he is achey... We have been rubbing A535 (Ben-Gay?) on his legs, and he will literally sit still for 10 minutes or so to let us (again saying something for a 2 year old), and sometimes will actually bring me the tube and lift his pant legs up... anyone else deal with this? anything you found that helps in particular? we dont give him motrin or tylenol, unless he has a fever, or is in ALOT of pain, since he has quite frequent fevers, since we dont want him on it ALL the time. so were limited for pain relief... Thanks, Keely Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2004 Report Share Posted November 7, 2004 Well Im not sure its bad enough to warrant painkillers or anything just yet, as hes not in a rediculous amount of pain, and resting and ben gay seem to do the trick right now... he is also just recovering from a cold bug, and ive noticed when he gets viruses he always has a low period for a few weeks after, so im sure its worse than normal right now... what exactly is neurontin? I have talked to the doc about Carnitor, and have been told that while his levels are the low end of normal, they are not low (news to me, Id been told 3 times they were low, now they say they arent???) MINE are low, but his arent... so they dont want to consider carnatine suppliments yet. Basically they wont consider anything until the biopsy results are back. they dont want me giving him motrin or tylenol in the absense of a fever. they dont want me doing anything at all until they have the results (up to 2-3 more months). im a little frustrated, but theres not much i can do at this point. > Hi there > > wasn't a toddler when he was dealing with Mito but he did have some > pain. We tried Neurontin and that helped a bunch. also carnitor if he isn't > taking it already. It could be neuropathic pain (but I am not sure bengay would > help that so it might not be). You might try neurontin...its helped a lot of > mito kids with pain and would be my best suggestion. I think you are doing a > great job to figure it out and remember, we always know our kids best. > > My 3 yr old who has mild CP is dealing with leg pain and spends a lot of time > resting. We go to the park with friends once a week and aftre we are there > 30-45 minutes she wants to go home and sit on the couch. Mind you, she is > addicted to the swing and is sitting most of the time. So I am trying to solve my > own mystery with this and am anxious to read the replies you will get. > > > > 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.org > www.HeartLiftersGallery.com > Crazy Lizzies!! PURSES! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2004 Report Share Posted November 7, 2004 Well Im not sure its bad enough to warrant painkillers or anything just yet, as hes not in a rediculous amount of pain, and resting and ben gay seem to do the trick right now... he is also just recovering from a cold bug, and ive noticed when he gets viruses he always has a low period for a few weeks after, so im sure its worse than normal right now... what exactly is neurontin? I have talked to the doc about Carnitor, and have been told that while his levels are the low end of normal, they are not low (news to me, Id been told 3 times they were low, now they say they arent???) MINE are low, but his arent... so they dont want to consider carnatine suppliments yet. Basically they wont consider anything until the biopsy results are back. they dont want me giving him motrin or tylenol in the absense of a fever. they dont want me doing anything at all until they have the results (up to 2-3 more months). im a little frustrated, but theres not much i can do at this point. > Hi there > > wasn't a toddler when he was dealing with Mito but he did have some > pain. We tried Neurontin and that helped a bunch. also carnitor if he isn't > taking it already. It could be neuropathic pain (but I am not sure bengay would > help that so it might not be). You might try neurontin...its helped a lot of > mito kids with pain and would be my best suggestion. I think you are doing a > great job to figure it out and remember, we always know our kids best. > > My 3 yr old who has mild CP is dealing with leg pain and spends a lot of time > resting. We go to the park with friends once a week and aftre we are there > 30-45 minutes she wants to go home and sit on the couch. Mind you, she is > addicted to the swing and is sitting most of the time. So I am trying to solve my > own mystery with this and am anxious to read the replies you will get. > > > > 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.org > www.HeartLiftersGallery.com > Crazy Lizzies!! PURSES! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2004 Report Share Posted November 7, 2004 lol I didnt think that at all! Ive actually never heard of neurontin, I will do a bit more reading on it and see if it seems like somethign taht could help... were actually seeing a metabolic specialist up her ein Canada... Thank you for the response, Ill look into it, and it gives me a starting point if things get out of control.. Keely > Man, I remember those days of waiting for the results...did you see Shoffner > then? > > About Carnitor... never had any off lab except some mild CPKs but > everything else was always normal. The local metabolicist never could understand > that...she often said as your dr that she dind't know why Shoffner and Korson > wanted him on Carnitor when his carnitine levels were normal. She had quite > the attitude with me--basically since she was not in charge (because she only > had a couple of prior mito pts). She always questioned the diagnosis b/c she > didn't make it. I feel pretty confident in saying that most of the well-known > mito guys (this coming from hearing them speak at conference in 2002 and > knowing patients of thiers too) that the theory on Carnitor is that it might not > help, but it wont hurt either. They basically say its worth a try. Now, you > can take that for whatever its worth to you. > > About Neurontin: the med does several things...helps with seizure, > neuropathic pain and a few other things. Its not a PAIN med like morphine or even > motrin...it works in a different way. I am sure you can do a search on it and > read more. It has been in the news lately but I can't remember why...side > effects to certain pts...taking it for totally different reasons than mito kids > would need. I know its helped a lot of kids...and I know a couple it didn't help > with. It was really a wonder drug for us. was never in big > pain...just more like fatigue pain and also what I think was numbness and > tingling...just because he never could tell us for sure but based on the same things you > used to judge...we think that it what it was. > > does that help any? Please don't think I am trying to cram Pain meds down > your throat...Neurontin really works in a very different way. > > deb...mom to three great kids and wife to one amazing guy! > http://www.lifeofloveproject.org/ > http://www.heartliftersgallery.com/ > Crazy Lizzies!! PURSES! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2004 Report Share Posted November 7, 2004 lol I didnt think that at all! Ive actually never heard of neurontin, I will do a bit more reading on it and see if it seems like somethign taht could help... were actually seeing a metabolic specialist up her ein Canada... Thank you for the response, Ill look into it, and it gives me a starting point if things get out of control.. Keely > Man, I remember those days of waiting for the results...did you see Shoffner > then? > > About Carnitor... never had any off lab except some mild CPKs but > everything else was always normal. The local metabolicist never could understand > that...she often said as your dr that she dind't know why Shoffner and Korson > wanted him on Carnitor when his carnitine levels were normal. She had quite > the attitude with me--basically since she was not in charge (because she only > had a couple of prior mito pts). She always questioned the diagnosis b/c she > didn't make it. I feel pretty confident in saying that most of the well-known > mito guys (this coming from hearing them speak at conference in 2002 and > knowing patients of thiers too) that the theory on Carnitor is that it might not > help, but it wont hurt either. They basically say its worth a try. Now, you > can take that for whatever its worth to you. > > About Neurontin: the med does several things...helps with seizure, > neuropathic pain and a few other things. Its not a PAIN med like morphine or even > motrin...it works in a different way. I am sure you can do a search on it and > read more. It has been in the news lately but I can't remember why...side > effects to certain pts...taking it for totally different reasons than mito kids > would need. I know its helped a lot of kids...and I know a couple it didn't help > with. It was really a wonder drug for us. was never in big > pain...just more like fatigue pain and also what I think was numbness and > tingling...just because he never could tell us for sure but based on the same things you > used to judge...we think that it what it was. > > does that help any? Please don't think I am trying to cram Pain meds down > your throat...Neurontin really works in a very different way. > > deb...mom to three great kids and wife to one amazing guy! > http://www.lifeofloveproject.org/ > http://www.heartliftersgallery.com/ > Crazy Lizzies!! PURSES! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2004 Report Share Posted November 7, 2004 Our is having joint pain lately. She is six. She also has calf pain. OUr son has had joint pain for about a year. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2004 Report Share Posted November 7, 2004 Our is having joint pain lately. She is six. She also has calf pain. OUr son has had joint pain for about a year. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2004 Report Share Posted November 7, 2004 Dear keely, Your symptoms describe exactly what happens to leanna and she is 7. Well, it first started out for Samya (who died 2 years ago) for about 2 years on and off. She would describe her legs as stiff and literally could not walk and if she did it was in a very unusual way. I took her to the doctors the first time it happened and nothing was found. Back then, mito was never considered and she was undiagnosed anyways. The episodes kept happening on and off sometimes 6 months between sometimes days between. There was never any rhyme or reason t it. In fact, we were told that it was psychosomatic and now we know it absolutely was real, poor baby. As her disease progressed, the episodes became for frequent, would last longer and then her last episode never disappeared until she died. Leanna never had these symptoms until May of 2004 in school. She had no recollection of her sister's episodes and yet her " walk " was exactly like Samya's and her complains too. She says her legs are stiff, hurt and she collapses to the floor as if her legs are suddenly paralyzed. The first time this happened, I went nuts. The doctor said it was called " neuropathy " and it was from her brain miswiring signals to her leg nerves and so her legs feel like jello and that Is exactly how she acts.The doctor said that the more frequent they become is simply an indication of the progression of her disease. The next episode was Sept 4 and then another came 3 weeks later and then her latest one was a week ago. This scares me to death because Samya never had them so frequent, but with this disease I have learned not to assume anything. I will tell you that the episodes did not occur on days where she was more tired etc. I tried to find a connection and there was none. There are days she can play beyond imagination, run around and not have one. There are days it happens right when she wakes up. No pain medicines seems to help. As for Leanna, it does not seem to bother her in any other way than not walkin. I just let her rest all day and vegetate. Once it lasted for 2 hrs and 3 times it lasted all day until the next morning. In fact when it goes away, it is almost like she was lying. It can go away as quick as it APPEARS. I just let her wait it out and rest and I pray she gets over it, but I know one day it may never go away just like neurogenic bladders. A year ago, leanna had a neurogenic bladder and we were told to cath her forever, and that went away completely, too. I rack my brain to find a connection, but in all honesty I can't. I just try to not stress her when it happens and to wait it out and I never force her to walk because that does not help. With Samya, we used to make her walk thinking it was muscular and that never helped but probab;y stressed her out more because it is neurological. I hope that helps.   Suhad Haddad -- Mom to Samya (Died 12-10-02 of Leigh's Synd.) & Leanna with same disease. Samya's Memorial Site: www.samyahaddad.com/.org/.net Email: Suhad1970@... Alt Email: Suhad@... AiM Chat: Suhad1970 toddlers w/sore legs... is almost 2 and doesnt talk, so i cant even be sure of the problem, but i suspect his legs get sore. he will get up in the morning, and play for about an hour, afterwards he starts to fall more (his leg gives out under him basically), and he gets really grumpy.... He will literally drag me to his crib and ask to go in (he signs). I will put him in it, and he will play happily for up to an hour. then he will usually get up, eat, and go down for a nap around 1. hes usually up by 3, but around 4-430 he is falling and asking to go in his crib again. the predinner time 'rest' is usually only half an hour, but again, he is happy to just play in his crib. he will usually get up then, and stay up until 7, but periodically through the evening, he will sit down on the couch for up to half an hour (long time for a 2 year old) and read, or watch tv, or just cuddle. While i have nothing concrete to go on, my impression is that his legs hurt. he will rub the tops of his legs sometimes and whine, and the way he falls looks alot like weak muscles (though overall he is quite strong). we know his CK enzymes are elevated, so the doc said it could be that he is achey... We have been rubbing A535 (Ben-Gay?) on his legs, and he will literally sit still for 10 minutes or so to let us (again saying something for a 2 year old), and sometimes will actually bring me the tube and lift his pant legs up... anyone else deal with this? anything you found that helps in particular? we dont give him motrin or tylenol, unless he has a fever, or is in ALOT of pain, since he has quite frequent fevers, since we dont want him on it ALL the time. so were limited for pain relief... Thanks, Keely Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2004 Report Share Posted November 7, 2004 Dear keely, Your symptoms describe exactly what happens to leanna and she is 7. Well, it first started out for Samya (who died 2 years ago) for about 2 years on and off. She would describe her legs as stiff and literally could not walk and if she did it was in a very unusual way. I took her to the doctors the first time it happened and nothing was found. Back then, mito was never considered and she was undiagnosed anyways. The episodes kept happening on and off sometimes 6 months between sometimes days between. There was never any rhyme or reason t it. In fact, we were told that it was psychosomatic and now we know it absolutely was real, poor baby. As her disease progressed, the episodes became for frequent, would last longer and then her last episode never disappeared until she died. Leanna never had these symptoms until May of 2004 in school. She had no recollection of her sister's episodes and yet her " walk " was exactly like Samya's and her complains too. She says her legs are stiff, hurt and she collapses to the floor as if her legs are suddenly paralyzed. The first time this happened, I went nuts. The doctor said it was called " neuropathy " and it was from her brain miswiring signals to her leg nerves and so her legs feel like jello and that Is exactly how she acts.The doctor said that the more frequent they become is simply an indication of the progression of her disease. The next episode was Sept 4 and then another came 3 weeks later and then her latest one was a week ago. This scares me to death because Samya never had them so frequent, but with this disease I have learned not to assume anything. I will tell you that the episodes did not occur on days where she was more tired etc. I tried to find a connection and there was none. There are days she can play beyond imagination, run around and not have one. There are days it happens right when she wakes up. No pain medicines seems to help. As for Leanna, it does not seem to bother her in any other way than not walkin. I just let her rest all day and vegetate. Once it lasted for 2 hrs and 3 times it lasted all day until the next morning. In fact when it goes away, it is almost like she was lying. It can go away as quick as it APPEARS. I just let her wait it out and rest and I pray she gets over it, but I know one day it may never go away just like neurogenic bladders. A year ago, leanna had a neurogenic bladder and we were told to cath her forever, and that went away completely, too. I rack my brain to find a connection, but in all honesty I can't. I just try to not stress her when it happens and to wait it out and I never force her to walk because that does not help. With Samya, we used to make her walk thinking it was muscular and that never helped but probab;y stressed her out more because it is neurological. I hope that helps.   Suhad Haddad -- Mom to Samya (Died 12-10-02 of Leigh's Synd.) & Leanna with same disease. Samya's Memorial Site: www.samyahaddad.com/.org/.net Email: Suhad1970@... Alt Email: Suhad@... AiM Chat: Suhad1970 toddlers w/sore legs... is almost 2 and doesnt talk, so i cant even be sure of the problem, but i suspect his legs get sore. he will get up in the morning, and play for about an hour, afterwards he starts to fall more (his leg gives out under him basically), and he gets really grumpy.... He will literally drag me to his crib and ask to go in (he signs). I will put him in it, and he will play happily for up to an hour. then he will usually get up, eat, and go down for a nap around 1. hes usually up by 3, but around 4-430 he is falling and asking to go in his crib again. the predinner time 'rest' is usually only half an hour, but again, he is happy to just play in his crib. he will usually get up then, and stay up until 7, but periodically through the evening, he will sit down on the couch for up to half an hour (long time for a 2 year old) and read, or watch tv, or just cuddle. While i have nothing concrete to go on, my impression is that his legs hurt. he will rub the tops of his legs sometimes and whine, and the way he falls looks alot like weak muscles (though overall he is quite strong). we know his CK enzymes are elevated, so the doc said it could be that he is achey... We have been rubbing A535 (Ben-Gay?) on his legs, and he will literally sit still for 10 minutes or so to let us (again saying something for a 2 year old), and sometimes will actually bring me the tube and lift his pant legs up... anyone else deal with this? anything you found that helps in particular? we dont give him motrin or tylenol, unless he has a fever, or is in ALOT of pain, since he has quite frequent fevers, since we dont want him on it ALL the time. so were limited for pain relief... Thanks, Keely Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2004 Report Share Posted November 8, 2004 Grace is also 2. She, also, has leg pains. She does have some ankle instability and weakened muscles in her legs, even though she appears to be rather strong. We had never thought of weakness until we noticed how much she falls compared to other two year olds. Then, we started noticing that when she falls her ankles foll out first. This led to the orthopedic doctor. Now she has hard plastic orthodics for her feet (they fit in her shoes). They have a flat bottom and cover her foot. They help keep her stable. She really loves them and will go get them for us to put them on her. She still sometimes has sore legs, and we treat that with massage (we avoid any pain medication unless totally necessary, due to her liver disease). Overall the shoe implants have cut way back on the soreness she was having (and the bruises, from falling so much!) Find the music you love on MSN Music. Start downloading now! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2004 Report Share Posted November 8, 2004 Grace is also 2. She, also, has leg pains. She does have some ankle instability and weakened muscles in her legs, even though she appears to be rather strong. We had never thought of weakness until we noticed how much she falls compared to other two year olds. Then, we started noticing that when she falls her ankles foll out first. This led to the orthopedic doctor. Now she has hard plastic orthodics for her feet (they fit in her shoes). They have a flat bottom and cover her foot. They help keep her stable. She really loves them and will go get them for us to put them on her. She still sometimes has sore legs, and we treat that with massage (we avoid any pain medication unless totally necessary, due to her liver disease). Overall the shoe implants have cut way back on the soreness she was having (and the bruises, from falling so much!) Find the music you love on MSN Music. Start downloading now! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2004 Report Share Posted November 8, 2004 Not to dismiss the pain; but could your kids be feeling pain assoicated with any growth spurts? Growing pains. Especially when I hear that it is in the calf area. Just a thought. But if it goes on as long as your son has had it, I would think differently. Nerenhausen mom to Leah wrote: >Our is having joint pain lately. She is six. She also has calf pain. OUr >son has had joint pain for about a year. > > > > > > > > >Please contact mito-owner with any problems or questions. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2004 Report Share Posted November 8, 2004 Not to dismiss the pain; but could your kids be feeling pain assoicated with any growth spurts? Growing pains. Especially when I hear that it is in the calf area. Just a thought. But if it goes on as long as your son has had it, I would think differently. Nerenhausen mom to Leah wrote: >Our is having joint pain lately. She is six. She also has calf pain. OUr >son has had joint pain for about a year. > > > > > > > > >Please contact mito-owner with any problems or questions. > Quote Link to comment Share on other sites More sharing options...
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