Guest guest Posted April 21, 2005 Report Share Posted April 21, 2005 As many of you know,,I have been thinking that something has been going on with my youngest son,,but haven't been able to figure it out. He has been having some constipation issues.He has been having alot of leg pains,just like Logan,,,but he has also had some speech problems,,that he didn't have a year ago. We just started speech therapy,2 hours a week. He is confused alot,,and seems kinda like he has a hard time remembering what words to use ,when he is talking. In the last couple of weeks,,he has been walking on the outside of his left foot. It was very pronounced today,so I took him to his pediatrician. He checked him over and said that he is definitely weaker in his left leg. He is also walking with a slight "flap" to his foot.His reflexes on that leg are slightly diminished. We already have an appointment scheduled with the neuro,,about the speech problem,on May 20. But his pediatrician wants him to have an MRI,of the brain,,and to try to get into the neuro sooner,if we can. We have a Tball game on Sat,against the pediatricians sons team,,so he is going to really watch him play. It is kinda hard to get a true assessment in the office. If he sees anything that he is really concerned about,,he will call the neuro and get him in sooner. I am sick to my stomach,with worry and a complete basket case. I didn't expect the pediatrician to say any of this,,,so I am blown over. Any ideas,suggestions,prayers,,or etc,are very much appreciated. Kim mom to Meaghan 15 ~~Katelyn 12 Bipolar,and OCD ~~ Logan 7 Autism,congenital myopathy,possible mitochondrial disease,and JRA ~~ and Ethan 5 and 100 % BOY__________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2005 Report Share Posted April 21, 2005 We are praying for you and your family, Kim. KK Panic,panic,panic As many of you know,,I have been thinking that something has been going on with my youngest son,,but haven't been able to figure it out. He has been having some constipation issues.He has been having alot of leg pains,just like Logan,,,but he has also had some speech problems,,that he didn't have a year ago. We just started speech therapy,2 hours a week. He is confused alot,,and seems kinda like he has a hard time remembering what words to use ,when he is talking. In the last couple of weeks,,he has been walking on the outside of his left foot. It was very pronounced today,so I took him to his pediatrician. He checked him over and said that he is definitely weaker in his left leg. He is also walking with a slight "flap" to his foot.His reflexes on that leg are slightly diminished. We already have an appointment scheduled with the neuro,,about the speech problem,on May 20. But his pediatrician wants him to have an MRI,of the brain,,and to try to get into t! he neuro sooner,if we can. We have a Tball game on Sat,against the pediatricians sons team,,so he is going to really watch him play. It is kinda hard to get a true assessment in the office. If he sees anything that he is really concerned about,,he will call the neuro and get him in sooner. I am sick to my stomach,with worry and a complete basket case. I didn't expect the pediatrician to say any of this,,,so I am blown over. Any ideas,suggestions,prayers,,or etc,are very much appreciated. Kim mom to Meaghan 15 ~~Katelyn 12 Bipolar,and OCD ~~ Logan 7 Autism,congenital myopathy,possible mitochondrial disease,and JRA ~~ and Ethan 5 and 100 % BOY __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2005 Report Share Posted April 21, 2005 Kim, My thoughts and prayers are with you as you handle this new set of circumstances. I hope the doc is able to get a good evaluation from watching him play ball. My daughter is newly diagnosed but I definitely relate to the fear of just having that gut feeling that something isn't right. I will be praying for you and your family. Please keep us updated. Meagan, mom to Sophia (11 months) www.caringbridge.org/ky/sophiesong__________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2005 Report Share Posted April 21, 2005 Kim, Although I have no suggestions-I will add Ethan to our prayer list. Our thoughts are with you. AnnKim wrote: As many of you know,,I have been thinking that something has been going on with my youngest son,,but haven't been able to figure it out. He has been having some constipation issues.He has been having alot of leg pains,just like Logan,,,but he has also had some speech problems,,that he didn't have a year ago. We just started speech therapy,2 hours a week. He is confused alot,,and seems kinda like he has a hard time remembering what words to use ,when he is talking. In the last couple of weeks,,he has been walking on the outside of his left foot. It was very pronounced today,so I took him to his pediatrician. He checked him over and said that he is definitely weaker in his left leg. He is also walking with a slight "flap" to his foot.His reflexes on that leg are slightly diminished. We already have an appointment scheduled with the neuro,,about the speech problem,on May 20. But his pediatrician wants him to have an MRI,of the brain,,and to try to get into the neuro sooner,if we can. We have a Tball game on Sat,against the pediatricians sons team,,so he is going to really watch him play. It is kinda hard to get a true assessment in the office. If he sees anything that he is really concerned about,,he will call the neuro and get him in sooner. I am sick to my stomach,with worry and a complete basket case. I didn't expect the pediatrician to say any of this,,,so I am blown over. Any ideas,suggestions,prayers,,or etc,are very much appreciated. Kim mom to Meaghan 15 ~~Katelyn 12 Bipolar,and OCD ~~ Logan 7 Autism,congenital myopathy,possible mitochondrial disease,and JRA ~~ and Ethan 5 and 100 % BOY __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2005 Report Share Posted April 21, 2005 I am sorry he has been struggling. I think I would be concerned about a stroke episode too. The MRI may not show anything though as they often only show severe strokes, so don't be surprised if it is read as normal. I think it may be ood to run some basic metabolic tests on him but don't panic because even if Mito is the cause, it can be a mild case. My oldest son has had several episodes and yet is doing very well at almost 17 years of age. In fact, this year he has been doing terrific! His muscle tone is awesome, he has tons of energy, and isn't having migraines any longer. I know he can go back down hill but for now he is doing great. I hope whatever I is causing your son to have problems will calm down and he will start to improve quickly. See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org (a photo look into Mito) Darla: mommy to Asenath (5) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, hypotonicity, disautonomia, SID, global delays, cyclic vomiting, bladder issues, some wheelchair use, eye issues, gastric emptying issues... Zipporrah (17 months) Mito, strokes, neuro-motor planning, SID, GERD, dysphasia, G-tube fed, speech delays, extreme fatigue, aberrant subclavian artery, disautonomia, hypertonicity, migraines, possible seizures, dumping syndrome, iron deficiency... Luke (17)migraines, sensory issues, & some evidence of SLE's... Leah (14), Rachael (13), Isaac (11), Tirzah (8), Kezia (4), Marquis (3) Joey (15 months) with hydrocephalus, dysgenesis of the corpus callosum, encephalomalacia & leukomalacia, G-tube, GERD, immobile, severe dev. delays, left hemiplegia (arm)... (15 months) SID, dev. delays, right hemiparesis issues... Panic,panic,panic > As many of you know,,I have been thinking that something has been going on > with my youngest son,,but haven't been able to figure it out. He has been > having some constipation issues.He has been having alot of leg pains,just > like Logan,,,but he has also had some speech problems,,that he didn't have > a year ago. We just started speech therapy,2 hours a week. He is confused > alot,,and seems kinda like he has a hard time remembering what words to > use ,when he is talking. In the last couple of weeks,,he has been walking > on the outside of his left foot. It was very pronounced today,so I took > him to his pediatrician. He checked him over and said that he is > definitely weaker in his left leg. He is also walking with a slight " flap " > to his foot.His reflexes on that leg are slightly diminished. We already > have an appointment scheduled with the neuro,,about the speech problem,on > May 20. But his pediatrician wants him to have an MRI,of the brain,,and to > try to get into the neuro sooner,if we can. We > have a Tball game on Sat,against the pediatricians sons team,,so he is > going to really watch him play. It is kinda hard to get a true assessment > in the office. If he sees anything that he is really concerned about,,he > will call the neuro and get him in sooner. > I am sick to my stomach,with worry and a complete basket case. I didn't > expect the pediatrician to say any of this,,,so I am blown over. Any > ideas,suggestions,prayers,,or etc,are very much appreciated. > > > > > Kim mom to Meaghan 15 ~~Katelyn 12 Bipolar,and OCD ~~ Logan 7 > Autism,congenital myopathy,possible mitochondrial disease,and JRA ~~ and > Ethan 5 and 100 % BOY > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2005 Report Share Posted April 22, 2005 To all that replied, I couldn't ask for a more understanding group of friends. This group,along with the myopathy group have been such a wonderful support,to me. I could feel myself going into full scale panic mode. The thing is,,I just never expected him to say that. I really thought,I would go in,,get an xray,,and that would be the end of it. I never would have dreamed that his leg is weaker. After I left,,I realized that I really didn't address the actual issue,of the way he is walking. I mean,,after he mentioned that the leg is weak,,and that he wants an MRI,,I just kinda had tunnel vision. He is still walking like that,,it is kinda like he is all of a sudden pidgeon toed,its very turned in(on that one foot),and also walking on the side of his foot. So,,Tball might be interesting. I'm not sure if he will be able to run,,,but if not,,at least the ped will be there to see that. I just wish I knew what the ped thinks is going on. Because I could let my mind go completely crazy here,and think horrible things. (stroke,tumor,,,etc) I could be way off base,,but I have had this feeling in my gut,,for a while,now,,that something is not quite right. I also wonder if it isn't mito related,,,then what else could it be ? Anyone know what would cause these kinds of things ? Anyway,,,I'll let y'all know,as soon as I know something. Oh and BTW,,the MRI is scheduled for Weds,,so at least I don't have to wait too long.Kim mom to Meaghan 15 ~~Katelyn 12 Bipolar,and OCD ~~ Logan 7 Autism,congenital myopathy,possible mitochondrial disease,and JRA ~~ and Ethan 5 and 100 % BOY__________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2005 Report Share Posted April 22, 2005 Kim, I didn't have a chance to write before and tell you how sorry I am about Ethan's new problems. We went through a scare (and not really over) with my youngest son last year. He started having weakness in his ankles, pain, a few seizure type episodes, etc. He was supposed to be our healthy child, had always done so well, although he was often fatigued. He had some metabolic tests and eegs that came out abnormal. He looks so good neurologically and developmentally that the local neurologist wasn't convinced it was mito. She did agree to start him on Carnitor, at my request, though. He is completely better since we started it. (We had already started giving him COQ10 as well.) It's relief he is doing better, but doesn't make me feel good that Carnitor is helping. I just wanted you to know that I understand your fear, and will be praying for you. Donna H. Mom to Craig (8)with unspecified mito and Dalton(6) > To all that replied, > I couldn't ask for a more understanding group of friends. This group,along with the myopathy group have been such a wonderful support,to me. I could feel myself going into full scale panic mode. The thing is,,I just never expected him to say that. I really thought,I would go in,,get an xray,,and that would be the end of it. I never would have dreamed that his leg is weaker. After I left,,I realized that I really didn't address the actual issue,of the way he is walking. I mean,,after he mentioned that the leg is weak,,and that he wants an MRI,,I just kinda had tunnel vision. He is still walking like that,,it is kinda like he is all of a sudden pidgeon toed,its very turned in(on that one foot),and also walking on the side of his foot. So,,Tball might be interesting. I'm not sure if he will be able to run,,,but if not,,at least the ped will be there to see that. I just wish I knew what the ped thinks is going on. Because I could let my mind go completely crazy here,and think horrible > things. (stroke,tumor,,,etc) I could be way off base,,but I have had this feeling in my gut,,for a while,now,,that something is not quite right. I also wonder if it isn't mito related,,,then what else could it be ? Anyone know what would cause these kinds of things ? > Anyway,,,I'll let y'all know,as soon as I know something. Oh and BTW,,the MRI is scheduled for Weds,,so at least I don't have to wait too long. > > > > Kim mom to Meaghan 15 ~~Katelyn 12 Bipolar,and OCD ~~ Logan 7 Autism,congenital myopathy,possible mitochondrial disease,and JRA ~~ and Ethan 5 and 100 % BOY > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
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