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lillianwalsh

Alice in wonderland syndrom

My daughter had 2 seizures in 2006 when she was 2 and was diagnosed with simple partial seizures.  She was treated for a year and weened off the medication.  Ever since she still have terrifying episodes where she sees things getting bigger or smaller.  She also says she feels like she is flying when this happens.  Im guessing she is feeling like the room is spinning.  We've been in the car when this has happened And she grabs onto her car seat like she is falling.  Her pediatrician hasnt been concerned at all with any of this.  Most of the time she has been sick when these things happen but not always.  She is almost 8 now and recently it has been happening again.  She is very scared and says she feels like she is in her dream and is terrified of her own voice.  She has mentioned hearing voices from her dream.  She has night terros almost every night and I have a very hard time snapping her out of it.  I'm waiting for her neuroligist to call me back with an appointment but just wondering if anyone else has had this experience. 

Comments

Re: Alice in wonderland syndrom

My daughter is 10 and was just diagnosed with epilepsy in April 2012. When she started taking medications, in particular after starting trileptal, and dilantin, (keppra did not work) she started talking about the alice in wonderland syndrom. We tried to go off the dilantin 2 weeks ago (weaned for 4 weeks), and just have trileptal, but seizure activity returned meaning the trileptal is not working for her either. We are back on a higher dose of dilantin to ward off the clinical seizures. The Alice syndrom has gotten worse for her and more frequent. Now I'm wondering if those are seizures since your daughter isn't on any meds?

Have you heard anything back and have any answers for what is happening?

Venessa

 

Re: Alice in wonderland syndrom

Hi,

My son began having complex partial seizures at age 2. His seizures last about 30 s to 45 seconds, and now that he is old enough to talk he tells me that he feels like "he is falling or going up and down hills in a car really fast". He holds on to whatever is nearest to him or he will lie down on the ground. Same seizure, every time. Maybe your daughter's episodes are seizures like my son's. He has temporal lobe epilepsy and his nuerologist told us when she saw his seizures she didn't think they were seizures at all but a behavioral thing, she had never seen anything like them. Hope this helps and good luck.

Amy

Re: Alice in wonderland syndrom

Hello, My son was diagnosed 2 years ago with Alice in wonderland syndrome. He was 7 at the time. When he first started telling me what was happening to him I recognized his symptoms as something I had experienced many times when I was a child. The only thing that worked for me and then subsequently for him, was what i call a "reset". whenever he has a episode...i have him lie down in his room with the lights off and his eyes closed. i make sure there is no sound or I give him earplugs to use. After a while(any where from 2 minutes to 5 or 10 mins) his episode goes away. Since there is no audio or visual stimuli during this time, it eliminates the scary feeling of things getting bigger or smaller or sounds seeming to be super slow or super fast. I stopped having the episodes when i was around 10. My son is now 9 and his episodes are almost nonexistent. I do recommend letting her teachers know that she has the syndrome and setting up a game plan for when she has episodes when she is in class. We talked with his school and they had a "quiet room he could go and sit in and close his eyes for a few minutes. I hope this information helps. Good luck in the future.