Re: /ALL-about SLE's?

[Guest guest]

Stroke like episodes can look differently with each occurrance I have been told that they mostly occur because of inflamation in the brain caused by the oxygen/energy crisis Mito causes. I can't explain that much more but can tell you how my girls have shown their stroke episodes. Our case is a little bit complicated as Asenath can have strokes from two different sources; one being vascular in nature and the other being caused by the metabolic inflamation. Some are much more concerning/worse and cause more serious issues and others are more annoying temporary afflictions. If the strokes are caused by temporary inflammation in the brain, the problems tend to be more temporary, whereas vascular problems or trama cause more permanent issues to occur. Everything varies greatly however. If the left side of the brain is affected then the right side of the body can be affected and if the right side of the brain is affected then the left side of the body will be affected. Then there are areas of the brain such as the speech and cognitive centers that tend to be hit when the left upper/center of the brain is hit. Anyway, some of the issues we have seen with our girls are: muscle weakness/low muscle tone (hypotonicity), muscle tightness (hypertonicity), turning in of the feet towards each other, hyperextending the knees, curling of the toes, standing on tip toes or sides of the feet rather than being flat footed, inability to bear weight on their legs, weakened thighs and hips, popping joints, muscle pain, dystonia (may be temporary or long lasting), trunk weakness causing inability to sit/leaning/slouching forward/leaning back on things, tremors, posturing the arms or pulling legs up toward body, wrists bent forward, fisted hands, fingers curl (sometimes when performing certain tasks or all the time), inability to use hands for very long/turn doornobs/hold pencil/hold spoon/etc., left or right-sided neglect issues (sometimes totally forgetting they have a left or right side), problems holding head up, body awareness issues (watches tv with head held sideways rather than upright), drooping mouth/cheek/neck, one eye closed more than the other, slurred/thick tongued voice, recall problems (can lose information normally knows-colors/places they love/parts of their body), attitude/personality change, disoriented (don't understand things like before such as where, who, what, when, why questions), disorganization issues, sensory issues (touch/smell/taste/numbness/tingling/dizziness/balance problems/how to calm themselves/temperature issues/etc), feeding issues (swallow problems such as gagging or coughing especially on liquids), tracheal problems/breathing issues, eye problems (many different sorts including blindness/peripheral vision blurriness/ zoom camera vision/etc), balance issues causing inability to turn ones head from side to side without becoming very dizzy and nauseous, migraines, seizures... Enough??? We have actually dealt with everything on this list since 2001. I am sure I am missing some issues and if you have certain concerns you have seen in your child, feel free to ask me more about them. Each oth these issues can occur in a major, moderate, or a minor way. These issues disappear within hours, days, months, or are permanent. Doctors use different terms to differentiate between strokes, stroke like episodes, and Transient ischemic attacks (TIA's). All are forms of strokes, they just have a different time period or lasting issues. TIA's last minutes to a day or two at most, SLE's last days to weeks/possibly months, and strokes are ones that usually leave permanent issues or have issues that last for many months. With strokes, they say anything not regained within a year from the episode will usually be permanent. Even with SLE's and TIA's there can be some areas not regained, but most things, if not all, are regained with them. I hope this info is helpful to you or anyone else who may be wondering. By the way, we find that most of these episodes occur during or within two weeks following a virus. Dr. Cohen wrote an article that states the sane thing. That is why we hate viruses so much in our home! Asenath has a stroke every time she is ill. There has only been one virus since 2001 that has NOT caused a stroke in her, and Zipporrah has had two major upper respiratory illnesses with two strokes so she is following her pattern. Darla Darla or anyone else about SLE's? Hi Darla and everyone,Darla I addressed this to you because I've seen the most from you about SLEs but I'm sure there are others who have seen and dealt with these too. We think we have seen at least 2 if not 3 of these in Will lately, but aren't sure. When we've described them to the DRs they agree it is a possibility, but nobody can be sure. I just wanted to see what others have seen, and what could be done to avoid anymore. Although Will has seemed to recover physically from these episodes I don't think they are doing him any good and he definitely struggles through them. We have also seen a lot of negative changes in him lately that started right after the first episode.Thanks for any input JColorado