Hello
| Posted: November 12th 2009 | |
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Piglet1 |
Print Hi my daughter has been clinically dx with Mito, and we are waiting on her test resulst to hopfully give us the specific Mito disorder she has. Her Dr. believes that it is a mutation that started with me, my older daughter does not seem to be symptomatic at this point, although she seems to be struggling with migraines and stomach aches now, and I'm not sure what to think of that.
My yougest daughter that has the dx is 3, she has mild low tone, and yet has tight hips and thighs, she has knee pain that we are trying to help in PT, she has graduated in and out of speech multiple times so the school district is now just keeping her in. She has asthma that we are trying to controll. She has many GI issues from DGE, constipation, and she had reflux but not sure on that one at this point. She is almost completly g-tube feed on continuous feeds, she has dysphagia and so is not allowed any liquids but she is at this point allowed cheables and puree's (although we have another swallow study schedulaed for the begining of Dec). She fatigues easily and even her PT has noticed that she gets winded easily as well. She has problems getting cold really easily as well as gets overheated very easily, in fact I have found that she seems to have a very small range of comfortable temperature.
I also seem to be having worstening symptoms as well from my asthma being out of controll, my GI track is messed up now, and I can barely make it through the day energy wise, and while I've always gotten sick easily and more sick than others it seems to be getting worse.
Heather Mom to 2 little girls Elyssa - 6 Katlyn - 3 |
Hi Heather. I felt this is
Submitted by arktjk on Fri, 11/13/2009 - 1:08pm.
Hi Heather. I felt this is a post I could reply to. I have a 7 year old son. Actually I will first start by saying my family has melas. My son has only very mild symptoms, which most people would not even notice. He has a few of the exact same things as your daughter. He has mild low tone in the core, and extremities and decreased strength in his core muscles. He has suffered from on/off knee pain since about the age of 3, but doctors have always blown it off. We finally had a PT eval done. He has tightness in his hamstrings and hips. So that along with the lower tone and the fact that he has loose ligaments and his feet are "flat" (I don't know if that is the right way to describe it) all add up to knee pain. The ped. physiatrist recommended swim therapy, which we just started, so as not to put as much pressure on the joints. He does have mild issues with overheating easily and fatigueing earlier than his peers. That part we keep an eye on. Otherwise he does well. Some of the other symptoms your daughter has we dealt with in our daughter. She died this March at 8 years old and was severely affected. We dealt with the g-tube, reflux, constant vomiting, a trach, etc, and basically her brain disintegrated. She is another story. I have my own different set of problems. I just wanted to let you know you are not alone in your situation. I have pretty much dealt with every problem that could happen from mito disease. The only thing we did not have to do was a ventilator at home with our daughter. I wish I could offer you some help, but maybe knowing you share the same experiences as others will be of some comfort. Take care, Beth www.believingandachievingforabby.com (this is my daughter's website)
Hi, My 21 year old daughter
Submitted by msc1 on Sat, 11/21/2009 - 11:58am.
I'm sorry that your daughter
Submitted by cellolover on Sat, 11/21/2009 - 6:28pm.
Rachel- I have abnormalities in Complex I,II, and V. I also married a wonderful man on June 5, 2010.