My son was diagnosed with Chiari I (11mm) a couple weeks ago, he is 4 years old. He is having a bunch of issues right now... headache since November, his voice turned raspy in like October, shoulder and neck pain, knee and leg pain, last week he said his toes hurt and then over the weekend they went numb, twitchy hands, sometimes it takes him a bit to respond even though I am right in front of him - it's like there is a delay, intense mood swings, very irritable and almost like he has no reasoning anymore, it is also next to impossible to get him to make a decision on something when asked and he gets very frustrated because he can't seem make a choice. Oh and he also has left side weakness in his facial muscles that his pedi noticed in some of his expressions and is unable to hold air in his left cheek. Aside from all that I've noticed for the past couple of weeks that he has been remember things that never happened. He has primarily been talking about things he did at my dads house when he stayed there but he has never stayed there or been to his house. In fact, he has only seen him three times in his life. He recalls these false memories several times a day and it is always different stories and he tells it like it is a vivid memory of his. I've tried telling him that they never happened and he is just being silly but he gets very upset and insists that they did. Is this part of having chiari, something else or normal for a 4 year old? Has anybody ever experienced anything similar? All of his issues have been very progressive lately and this is all happening so fast that it is kinda' scaring me. Every few days there is something new with him or something else on him that hurts. We are inbetween neurosurgeons right now but will hopefully be getting in with Dr. George in Austin within the next week or two. Hoping you guys can shine some light on this memory thing, I don't remember any of my other children doing this and it just seems odd. And I would love to hear whatever other information you would like to share with me that may be helpful based on my sons issues that he is having. I don't know if it is the pain he is in or what but this has changed my sweet little boy, I no longer see joy when I look in his eyes. He just looks miserable. :(
I am sorry to hear about your son and the difficult time he (and your family) are having. I hope that you get some care pronto to help him out. In terms of memory, that is definitely something that occurs in Chiari. Though for me, it was more of a coding issue. My memory is actually fine (as tested by a neuropsychologist) but if there are distractions of any sort, then a memory does not get placed in the vault correctly, if at all. I am no child neuropsychologist, but I am wondering if a child would have even more issues with memory as they are not always cued into what is real or not real and have not learned about details that tell you if a memory is false (like do you have a memory of travelling to a site but just have a memory of doing something). Sometimes as adults, we can get confused about if a dream is a memory or made up but we have strategies to figure that out. Memories are fluid and changeable for everyone of every age. Might want to talk to someone about how to deal with false memories or if you even make a big deal about it at all.
As well, when my Chiari symptoms were really bad before surgery, I literally thought my brain was diseased in some way as I knew it was not working right. A child of four cannot always verbalize or even recognize if his brain is not functioning properly. Good luck in sorting this out and being supportive for him.