Mitochondrial diseases are a group of disorders relating to the mitochondria, the organelles that are the "powerhouses" of the eukaryotic cells that comprise hi...
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My daughter Kennedy
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I joined to group and wanted to introduce us. I am Colleen. I have 2 children, Kennedy(6)and Zach(3). Kennedy has been diagnosed with complex I deficiency mito. This diagnosis was just recently confirmed by repeating tests, but has been suspected for over a year now. Kennedy has always had a physical/cognitive disability. She was diagnosed with ataxic CP(unknown cause) at 2yrs old. She also had chorea and hypotonia. These left her very unsteady and always needed assistance. She was able to sit up, crawl and walk with a walker. Last spring she had a couple minor seizures and started on meds. Then in Sept she started full day of school. The seizures started getting worse. Then she started having GI issues. AT 3 she got a gtube for supplemental feedings cause she couldnt gain enough weight. She still ate orally all kinds of food(just couldnt get enough). Then when all this stuff started happening this fall, she also started vomitting a lot. First they thought it was due to her meds, then constipation, then finally found out that she all of a sudden had severe delayed stomache emptying problems. Then then switched her to a GJ tube and is on continuous feeds through her JTube. She was out of the hospital for 3 days and then suffered a bad seizure and was in status. The day after Christmas she was put into a pentobarb coma to stop the seizures. She finally awoke New years day. The left sided seizures stopped, but then she started having different activity on her right side. Her MRI's have shown significant damage to her right side, basal ganglia and cerebellum. The right sided activity has gotten better and doesnt show up like traditional seizures on EEG. They think the activity is movement disorder and partial seizures. Unfortunatly allthe damage has left her immobile, and lost all her speech. They still say they can not give us a prognosis, but do think all the sudden changes means the disorder has become progressive. She also has had vision changes. Due to her disability we can not know for sure how much she sees, but we do know that she has muscle paralysis in her eyes...so her vision is pretty much limitted to straight in front of her. As far as treatment, right now she is on meds to help her seizures and GI issues. For the mito stuff they increased her carnitor and coq10. They also added arginine and are trying to find a liquid Bcomplex.
Posted on 02/04/08, 10:02 am |
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Hi there,
I want to tell you that I know what you are going through because my son has also been diagnosed with complex 1 respiratory chain mito disorder. It is quite astonishing to read about Kennedy because my son Zane has a similar med history, almost identical. He is now 14. He has seizures and is wheelchair bound, he has lost cognitive skills and speaks very little. His eyesight is becoming a worry and he is vomiting a lot lately and not eating very much. He is on anti convulsant and antipsychotic meds but most of the time can't and won't stomache them. He is usually quite confused and hallucinates. How old is Kennedy? Is she able to laugh and have fun because Zane can most days and this is the only thing that keeps us from losing it! Take care, Aseneth 
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Hi
I am sorry your son Zane is going through similar issues as Kennedy. We are trying to stay as positive as we can about everything. Like you said it is the happiness they have that gets us through everything. I was actually quite surprised at how happy Kennedy still was after leaving the hospital and not being able to do the things she did before. She is 6 but likes alot of the toddler stuff. So this past weekend we went to one of the toddler shows that were performed live(backyardigans). She absolutely loved it and brought me to tears watching her have so much fun! Also today happens to be a big day for her. She is having a wish granted from make a wish. She is getting her bedroom redone...disney princess theme. WE are having some friends over for the reveal tonight.
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oh I also wanted to add...We have to give all Kennedys meds through her j tube otherwise she would vomit them back up.
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hi my son is just five he has mytocondrial cytopath ,gastric feed,hearing and sitght loss seveir epelepsy,and severe developement deley. he has just bin fitted with a vagal stimulater to help with his fits. he fits all the time and vomits all the time he has bowl problems and we see that he is going down hill fast.he needs oxygen a lot of the time and services have been of great help but like you all we still feel very alone. being able to contact families with simuler problems just seems to help to not feel so alone.just waiting for mri results to see how far the disease has spread. x
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