Re: Lynne- strokes w/ viruses & etc.

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Zipporrah was checked for vascular problems with a MRA but all looked ok at the time. Luke will have a MRA with the MRI as well just to be sure. The Adult reumotologist believes Mito caused the vasculitis so that makes me somewhat more worried about the possibility of some of my other kids developing it down the road, so we will be careful to scan for it when they have MRI's. Definitely strokes and the migraines happen when the girls have virus symptoms. Some of the colds are bad but many of them are just low fevers with drippy noses, very minor, so it is very frustrating when they have a stroke from such a small virus. Dr. Cohen has a good article on how to treat viruses in Mito children that talked about metabolic strokes happening from inflammation caused by fevers and etc. So even low fevers for Mito kids can cause problems! Our kid's viruses very clearly trigger the episodes! The worse the virus, the worse the outcome of the stroke seems to be. The docs told us bacterial infections would be the worst for our kids. Almost every single virus Asenath has had has caused a stroke, some small, some larger. Zipporrah seems to be following the same pattern with two upper respiratory infections causing two strokes and small fevers with drippy noses causing two very small episodes. Wouldn't it be nice to just have healthy children; a normal lifestyle? I remember three or four years ago worrying about my kids' colds more because it made them feel miserable and clingy, but now, every virus is an assumed stroke to come. Most people couldn't imagine how routinely we expect strokes. Obviously we are concerned and know they can cause devastating results or even death, but it happens so often in our home, it is as if they are the norm for life. Strokes aren't just little viruses, but they seem to occur just as if they were. I would definitely check more into the metabolic acidosis issue. Asenath has had that issue almost constantly since we first saw Dr. Whiteman and was one of her foremost problems he discovered. It throws off the blood system and can cause major organ failure. That plus the Carnitine deficiency was what we believe caused her to have continual migraines before seeing him. He immediately placed Asenath on Citra 3 and Carnitine and after only three days her 9 week straight migraine reduced in the level of pain 10 fold. She went from moaning and whining and rolling around on the ground all day to smiling for the first time in over three months. We were and still are amazed no other doctor could do simple blood work to reveal those issues and to help her. Dr. Whiteman is our hero! Acidosis issues are very common in Mito. Asenath tends to be metabolically acidotic and Zipporrah, as well as myself, has been found to have lactic acidosis at times. I have so much on my mind to discuss with the neurologist and geneticist at the end of the month. I need to write them all down so I can come prepared mentally and get some answers to all the things I am thinking about. I will definitely keep you updated as I know your son is so much like my kids. Take care of yourself! Darla Re: Re: Lynne- About Luke: migraine & paralysis Wow, you seem to have read most of the same stuff as me, and thensome. I have only found the same info about hemiplegic migraine as you(ie, lasting damage only happens if there is a stroke), which is why Idon't think Jericho has that. He too has lasting damage, though hisonly occurs if he has an episode that lasts a week or longer. And henever has pain in his head. Plus his MRI's haven't shown evidence of astroke. Sorry I can't help more with the symptoms after migraine, asmigraine was only something being considered for Jericho's case, and westill don't know what he has. As for Luke's mission - it's funny but I had a good feeling about ittoo. I'm glad you are letting him go. I hope the other kids' migraines will respond to something, and turnout okay. Have any of your other kids been checked for vasculitis? On another topic - you have mentioned in the past that Asenath andZipporrah have strokes when they get viruses. That is something that iscoming up now, with Jericho's ped. She thinks he may be getting virusesthat are triggering many of these episodes, even though he doesn't get arunny nose or fever usually. That would make sense, since he never getssick during cold/flu seasons, but he often has episodes then. Oddlyenough though, the times he does get cold symptoms, it is always milderthan what everyone else has got, and even if he is having neuro symptomsbefore and after the cold symptoms, they stop during the cold symptoms. My impression is that when Asenath and Zipporrah get colds or flu,they are really sick from the cold symptoms too, not just the neurosymptoms. Jericho's ped had me make up a chart of his labs, and I discoveredin some records that Jericho had metabolic acidosis a year and a halfago. He was sick but had no fever, and had neuro symptoms during that.I need to talk to his ped to find out more about that. She has ordered more comprehensive labwork to be done the next timehe is ataxic or has a cold symptoms with a fever (which is rare, sowe'll probably be going when he has ataxia). Good luck, I hope we both get more answers soon.Lynne