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Hoping for diagnosis & confusion with multiple symptoms

Sun, 02/12/2017 - 11:49
My daughter is 15 and has been dealing with some increasing symptoms that have caused both our PCP and an ER doctor to refer us to a neurologist. I'd like to first say that when she was 8, she kept complaining that she "couldn't see the board" and "couldn't see the teacher" at school sometimes, and when we got her eyes checked she explained it was because everything would go black, not because her vision was poor. When it would go black, she would sometimes see colorful shapes like red circles and purple triangles in the blackness. She fell up the stairs twice at school from this happening, so we were sent to a pediatric neurologist. The guy did an MRI, sat in the room with us for about five minutes... asked her to draw what she saw, and before she could even complete the outline of a triangle, he interrupted and said it was visual migraines with no headache pain and she was fine. So she has dealt with that on and off ever since. There have been more on and off things since about age 11 (quick spells of dizziness, heart racing, ears ringing, small bouts of quickly rising and passing nausea almost daily, etc) that we have always just shrugged off. "go drink more water.. maybe you're hungry.. etc" In the past month to month and a half, she's had a fast and major increase in symptoms. Initially she got what I thought was her first true migraine. Pain in right occipital area that would creep up her right temple, sensitivity to light, nausea, left temple pain. But within two days she started having other stuff. The going black/seeing shapes started happening a lot. She was tuning out of conversations or forgetting what they were discussing, she walked into her class and couldn't recognize any classmates for about 10 seconds.. couldn't log into an app because she realized she couldn't spell her name at that point in time... and smelling awful smells that were usually followed by a strong wave of nausea and/or a very sharp head pain that would cross from right occipital to left temple. Then feel dizzy and confused for 2-5 min afterwards. She also gets a lot of "shivers" where it's just a brief 1-2 second shudder that is usually just her shoulders and torso. She can sometimes "hold it back" but maybe her legs will do a quick jump instead. The thing I don't understand, is her symptoms are so diverse. Sometimes she will have a day that is consistent: smell/head pain/dizzy-confused-where am I. Other days it's all over the map. Yesterday was tingling/burning bottom of feet with sudden nausea and dizziness, and she went white pale. Then in the afternoon it was a series of sharp head pains followed by forgetting what she was doing or getting a white circular hole in her vision for 2-3 seconds. Also, I have read a lot about the phantom smells as an aura, but hers are always different. She is tracking so we have a good log to give the neuro, and her smells range from "mint chocolate chip ice cream but really gross" to gas, popcorn, chemicals, "can't describe" "burning" "beef jerky but nasty" "old meat" and even "applesauce but really gross." Can it really change like that? I have beeen doing a lot of reading but don't see much about changing auras, it seems mostly consistent for most people. Hers different all day, every day. She had an MRI in the ER after an episode at school on Friday where after an hour of making notes (smell/head pain/I don't know where I am/shiver/quick blackout and saw shapes/I can't hear the teacher/shiver) her friends found her wandering the hallway and she was very confused. She was also upset because she could answer simple questions like "what is the date" but things like "what are your plans this afternoon" she couldn't remember and she couldn't form answers for complex stuff. She said she knew what she wanted to say and would look around and gesture but the words were stuck in her head. That happened about three more times while we were at the ER even though she was looking and ating perfectly fine. Even today she still has no idea where she had gone or what she was doing when her friends found her, she feels like she wanted to ask a teacher a question but cannot remember the question or if it was ever asked. As we figured, the MRI looked fine and the ER just said it must be a weird migraine and gave her Toradol, which helped the headache for about six hours. So anyway... my question is... can experiences of seizures change daily? If you get smells as an aura, do they change? The only consistent quality for her is that it is always an awful smell. She does not have a brain tumor or anything like that, as the MRI with contrast looked fine. She is worried and so are we. She feels like she is going crazy. She had the blackouts and shapes for so long that she never paid any attention to them, until this other stuff started happening too. Thanks, and if there's anything else we should be paying attention for, that would be great.

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