Guest guest Posted March 11, 2005 Report Share Posted March 11, 2005 we are being told by the doctors that our son may have a mitochondrial disease. We noticed his skin pealing on his hands fingers and toes. Is this part of this mitochondrial disease? Has anyone with this disease had this problem. How serious is this disease. He has lost 40% of his eye sight and has very weak legs and an enlarged liver. They did a musciel biopsy Monday and we are still waiting to hear on that.Please Help Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2005 Report Share Posted March 11, 2005 Hello, I really don't have much experience with the symptoms you are describing other than weakness in the legs. Our daughter, Ellie, is very weak but is gaining strength as she grows and works with her physical therapists. It took 2 months to receive her muscle biopsy results...it can take much longer. Where did you have the biopsy performed? What is your son's name? How old? Etc.... You have found a wonderful place for support and answers from those who know firsthand how this disease affects us all... KK Mommy to Ellie, 3 years old, Complex IV, Leigh's and my angel mitochondrial disease we are being told by the doctors that our son may have a mitochondrial disease. We noticed his skin pealing on his hands fingers and toes. Is this part of this mitochondrial disease? Has anyone with this disease had this problem. How serious is this disease. He has lost 40% of his eye sight and has very weak legs and an enlarged liver. They did a musciel biopsy Monday and we are still waiting to hear on that.Please HelpPlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2005 Report Share Posted March 11, 2005 My daughter's feet peel and she has mito I do not know if they have any connection. Kerry Mother to Abigail (mito) and Bridgetjay126_1998@... wrote: we are being told by the doctors that our son may have a mitochondrial disease. We noticed his skin pealing on his hands fingers and toes. Is this part of this mitochondrial disease? Has anyone with this disease had this problem. How serious is this disease. He has lost 40% of his eye sight and has very weak legs and an enlarged liver. They did a musciel biopsy Monday and we are still waiting to hear on that.Please HelpPlease contact mito-owner with any problems or questions. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2005 Report Share Posted March 11, 2005 Welcome to the group. You will notice that this group is a great place to come to for support and "been there" advice. How old is your son? Where did he get the muscle biopsy done? My daughter is 2 years old with a non specific form of Mito. She also had an enlarged liver, with extremely high enzymes. Thankfully, due to the cocktail of medicine she is now on her liver is functioning completely normal, with some permanant damage done from before, but nothing too bad. You had also noticed muscle weakness and skin problems. I'm sure you will get alot of posts about muscle weakness, as it is very common with mito. My daughter has some general weakness especially in her face, affecting speech. She also wears orthotics on her feet to help stabalize her balance due to some weakness in her ankles. I'm not sure if the skin problems are due to mito or not, but Grace has issues in that area as well. She seems to get Eczema really bad. Nobody else in my family has this problem, but her so we have blamed it on her mito. Best wishes carrie Find just what you're after with the new, more precise MSN Search - try it now! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2005 Report Share Posted March 11, 2005 Sorry to hear about your child's health problems. Each of our children have their differences and there is no set pattern for what will happen to our kids. I have two children dealing with the disease and they both are very similar and yet also have differences. Both have leg weakness, Zipporrah more so than Asenath. Both struggle with viruses and have migraines and stroke episodes causing multiple issues. We have been fortunate at this point to not have any organ damage, although what we do struggle with is neurological issues and damage from stroke activity and narrow arteries. We too have dealt with eye damage. We haven't dealt with any skin abnormalities so that one I will pass on to others. Mito is a very serious disease and it should not be taken lightly. Follow your doctor's advice and try to keep your child well hydrated, away from too much heat, not overexerting themselves, try to treat viral attacks and fevers quickly, and make sure to communicate with your doctors frequently and quickly when concerned about any new issues that arise. Some of our kids deal with much more than others but they all have unpredictable futures. Doctors only can guess on prognosis's, as they too do not totally know the future. In some cases, if the child is very severe they may be able to say the child has only a short time to live, but most of the time, they cannot tell what the future will hold. Some who are thought to have a short time live much longer than expected and sadly some leave us too quickly without warning. This is a great place to find strength and support. Feel free to share with us and ask anything you are wondering about. Someone usually knows the answer to questions posted. Welcome to the group. See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org to see a photo look into what Mito looks like Darla: mommy to Asenath (5) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, hypotonicity, disautonomia, SID, global delays, asthma, cyclic vomiting, bladder issues, wheelchair for distances, eye issues, autistic behaviors, gastric emptying issues... Zipporrah (17 months) Mito, strokes, neuro-motor planning dys., SID, GERD, dysphasia, 100% G-tube fed, speech delays, extreme fatigue, excessive phlegm, asthma, trach issues, aberrant subclavian artery, disautonomy, hypertonicity, migraines, possible seizures, dumping syndrome, iron deficiency, ... Luke (16), Leah (14), Rachael (13), Isaac (11), Tirzah (8), Kezia (4), & Marquis (3), Joey & (15 months) (some with Mito symptoms) mitochondrial disease > > > > we are being told by the doctors that our son may have a > mitochondrial disease. We noticed his skin pealing on his hands > fingers and toes. Is this part of this mitochondrial disease? Has > anyone with this disease had this problem. How serious is this > disease. He has lost 40% of his eye sight and has very weak legs and > an enlarged liver. They did a musciel biopsy Monday and we are still > waiting to hear on that.Please Help > > > > > > > > > > Please contact mito-owner with any problems or questions. > Quote Link to comment Share on other sites More sharing options...
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