Guest guest Posted October 10, 2002 Report Share Posted October 10, 2002 I guess I would suggest checking his pulse during these episodes. If his pulse is low or high it may indicate or at least rule out cardiac if normal. Also, what are his respiration's, slow or fast, regular or irregular. Do episodes happen at same time, or after certain activity? I know this is not much help. I know what it's like to not know why your child is doing weird stuff and the MD's don't know either. Don't give up, keep searching for an answer. Maybe video tape as much of next episode as you can. At least people would then believe length of episodes and be able to see how he is when he " wakes " up. Janelle McGuire Mom to 6 with mito and 9 with ADHD Burlington, Iowa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2002 Report Share Posted October 10, 2002 The episodes seem to happen around when he is getting sick or overly fatigued/stressed out. They are very unpredictable so having a camera handy is hard. We stayed in the hospital over night for the eeg and he didnt have any there. He had one that previous monday though. They did respirations at the hospital and they ranged in the 95-100% although one was 70% but they think that was because the thing wasnt on the finger right. We see the cardiologist on halloween so i will bring up all my concerns about heart issues w/ him. It is so frustrating. sarah mom to zach 2, ga2 alexis 3 > > I guess I would suggest checking his pulse during these episodes. If his > pulse is low or high it may indicate or at least rule out cardiac if normal. > Also, what are his respiration's, slow or fast, regular or irregular. Do > episodes happen at same time, or after certain activity? > I know this is not much help. I know what it's like to not know why your > child is doing weird stuff and the MD's don't know either. Don't give up, > keep searching for an answer. Maybe video tape as much of next episode as > you can. At least people would then believe length of episodes and be able > to see how he is when he " wakes " up. > Janelle McGuire > Mom to 6 with mito and 9 with ADHD > Burlington, Iowa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2002 Report Share Posted October 10, 2002 Ugh! I've no envy for being you right now! CLEARLY, something is wrong. Did he have an episode like this during the EEG? If not, they can't be sure it wasn't seizure related or an abnormal brainwave. It's this stage of knowing something's wrong and not knowing what it is that I find excruciating. Even when the news comes back the worst, at least then I know how to gear up and deal with it! Please keep us posted! Prayers and hugs, need some help I used to post a while ago when we were diagnosing my son w/ a mito disorder he has glutaric aciduria type 2 under the mito umbrella. We havent had too many problems w/ his condition except his speech isnt too good and he has some physical delays. Our thing is that he has been having these episodes where he will pass out for a while. His sugar is fine and he doesnt seem to regress or be in distress. We had a 24 hour eeg done and it showed no seizure activity which they origionally thought but he had abnormal brain wave patterns. I talked to his neuro and met specialist and the neuro thinks its related to the ga2 but he metabolic specialist did not. She sounded like she thinks its something else, suggested arrithmia but i doubt it could be that because he does not change color nor does the cardio mention anything that we see yearly. Although we are going to see him on the 31. The specialist is waiting for the eeg report so she can have a better insight on what is going on. I was told by friends and family that he just is tired but i knew something wasnt right. He just all of a sudden stares or goes out cold and u can not get any sort of stimulation out of him and sometimes that will go on for like 30 minutes to an hour. he will be like a rag doll. I was talking to someone and they said that abnormal brain wave patterns indicate there is something wrong. The neuro does think that is why he is having these episodes and that is also why he has such trouble w/ his speech. Any help would be great. I want to know if anything is causing brain damage but i know only the specialist can tell. He doesnt seem to regress only in the speech area. He has ok sugars the lowest one being 68 which isnt too bad. We really havent had any problems w/ hypoglycemia.sarah mom to zach 2, ga2alexis 3 fine Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2004 Report Share Posted October 17, 2004 Steve, Hello stranger, it is good to see you posting again. For those of you who don't know Steve, he's been a long LONG time member. He has severe systemic and neurosarcoidosis. In regards to your leg weakness, I know that quite a few of our members are wheelchair bound, and so I know someone will be able to help you. One of the ways that they can test for leg weakness, and if you have demylination of the spinal column is to do a spinal tap. If you've developed MS on top of the NS, that would show up. Another is the EMG test. I know MRI's are out, but I do believe they can do CT'S? I don't know if a CT will show demylination tho. I'd suggest trying to call the pulmonologists in Portland, and see if they can give you a name of a neurologist. You said you're an hour outside of Portland-- How far are you from Seattle Wash, or Denver Colorado. Both those cities have major sarcoidosis centers. Is this something Mom can help with? Send your Mom our love, and hugs to you, Tracie Quote Link to comment Share on other sites More sharing options...
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