If it isn’t one thing…
Ty seems to be having Alice In Wonderland Syndrome symptoms. What is AIWS you inquire? (Below from Wikipedia)
Alice-in-Wonderland syndrome (AIWS, named after the novel written by Lewis Carroll), also known as Todd’s syndrome, is a disorienting neurological condition that affects human perception. Sufferers may experience micropsia, macropsia, or size distortion of other sensory modalities. A temporary condition, it is often associated with migraines, brain tumors, and the use of psychoactive drugs. It can also present as the initial sign of the Epstein-Barr Virus (see mononucleosis). Anecdotal reports suggests that the symptoms of AIWS are fairly common in childhood, with many people growing out of them in their teens. It appears that AIWS is also a common experience at sleep onset. Alice in Wonderland Syndrome can be caused by abnormal amounts of electrical activity causing abnormal blood flow in the parts of the brain that processes visual perception and texture.
Signs and symptoms
Eye components are entirely normal. The AIWS is a result of change in perception as opposed to the eyes themselves malfunctioning. The hallmark sign of AIWS is a migraine (AIWS may in part be caused by the migraine). AIWS affects the sufferer’s sense of vision, sensation, touch, and hearing, as well as one’s own body image.
The most prominent and often most disturbing symptom is that of altered body image: the sufferer will find that he/she is confused as to the size and shape of parts of (or all of) his/her body.
The eyes themselves are normal, but the sufferer ‘sees’ objects with the wrong size or shape or finds that perspective is incorrect. This can mean that people, cars, buildings, etc., look smaller or larger than they should be, or that distances look incorrect; for example a corridor may appear to be very long, or the ground may appear too close.
For the last few months Ty has been struggling with nightmares. He begs me to pray for him every night before bed that he won’t have any dreams. He has also been more sensitive to the dark lately and complaining about weird noises all the time.
Last night, after Ty had been in his room for about 30 minutes (he was not asleep yet), he came out giggling hysterically. He told me that I looked very “far away”. We made him put his glasses on and take them off. Then we would stand in front of him at one foot and eight feet and with every change he just giggled away at how funny I looked so far away. I realized then that he has actually been telling me this at night quite casually but I didn’t understand what he was telling me and I had dismissed it as part of a bedtime avoidance routine. (I mean really – if object suddenly appeared very far away when you tried to go to sleep would you be laughing? Boy howdy not me! I’d be freaked.)
So yesterday when it registered that Ty was having a true visual disturbance, mama WAS freaked.
As you can predict, I immediately attacked the internet. My initial research kept turning up night terrors because people who have night terrors also sometimes describe similar visual disturbances. As I continued looking though, I came across Alice In Wonderland Syndrome which sounds like what Ty is experiencing. He is only speaking to the perceptual disturbance of objects looking very far away but I am not sure if Ty would be able to verbalize anything else very easily (for example sometimes they perceive time lapses incorrectly too but would Ty be cognizant of that even it it was happening?)
There are four main reasons associated to AIWS (only 3 are listed on Wikipedia though). 1. Migraines. 2. Psychoactive Drugs 3. Brain Tumor or 4. Temporal Lobe Epilepsy
Ty is not on any medication so that leaves the other 3 as possibilities. Hmmmmmmm…..
Ty has been complaining about his head hurting some but I don’t think these symptoms are simultaneous (but I haven’t closely evaluated it up to this point). Chances are, Ty is having optical migraines and is not (yet) having the associated headaches (thank the Lord). BUT considering Ty’s birth history, this mom wasn’t going to go through the weekend worrying about it so I went to see Dr. N.
Dr. N. confirmed my thoughts. He thought the symptoms quite strange (indicating to me that this complaint is not one that he hears). He thought I could pretty safely rule out a brain tumor because he checked the back of his optic nerve (I think that’s what he said) and there was no swelling. (Apparently when you have tumors, there is often pressure on the back of the eyes). Ty’s eyes looked fine.
He said that he had heard of Alice in Wonderland Syndrome and agreed that it was PROBABLY a migraine but that we needed to rule out epilepsy due to Ty’s brain hemorrhages and periventricularleukamalacia. (I am personally impressed with how fast I can type that word hee hee). Because we KNOW Ty sustained brain injuries at birth raising his chances for seizures exponentially, we can’t assume migraines in his case.
He ordered an MRI (just as a precaution on the tumor potential) and an EEG. I asked if we could have a well timed EEG because Ty is only complaining about this at the onset of sleep. Dr. N. argued that with Ty there is no telling how often this is happening. Maybe only at sleep time or maybe this is only when he stops to tell me. I thought his point valid. He said if the EEG comes back normal that we can discuss more of a sleep study approach as a phase 2. He also said that kids having seizures don’t always present as having seizures and he wanted to know if an EEG would pick it up during “non complaint” hours. I had to laugh because when we were leaving we were walking down the long hall and Ty says to me “Mommy things look far away”. Dr. N. heard him from his office and yells down the hall “I TOLD YOU!” LOL. Now in that case, was Ty actually having the symptom again or did he just say that because of the discussion? Who knows.
Tanner accused him of making the whole thing up (as any big brother would hee hee) but Jim and I are both certain that Ty described his symptoms as accurately as he could because in the first place, Ty does not excel in creative play and imagination so I don’t believe he would have come up with that and second, he was very sincere in explaining it while it was happening.
I know that night terrors and night seizures are not the same thing but also believe that sometimes people with night seizures do get night terrors (I have an adult friend experiencing this). That makes me curious then if the rise in Ty’s nightmares and night time paranoias are a result of seizure activity?
I don’t WANT this to be seizures (I have always been VERY afraid of this with Ty) but it actually seems more likely to me than migraines considering what I already know. On the other hand, I had the opportunity to facebook several of Ty’s genetic family members this morning and found out that a close relative to Ty did suffer significant migraines in childhood so that introduces yet another caveat into the equation.
If it is migraines, I wonder if the headaches are going to follow? When he has been complaining of head pain off and on lately is it actually much worse than I think? He does have very high pain tolerance so it’s hard to say. Migraines seems to be the lesser of the evils considering but I don’t want him to end up in pain (but maybe he never would?).
GETTING REAL FOR A MINUTE, I DON’T WANT ANY OF THIS!!!! IF THERE IS A QUOTA, HE HAS REACHED IT! I DON’T WANT ANY MORE SUFFERING FOR TY AT ALL IN ANY FORM WHATSOEVER!!!!
Jim and I both feel frustrated by this. We both are looking at each other saying “Really?” Add that to another kid needing an MRI in the last 3 months (Troy’s was in January). Good grief!!!
Reading my ranting is probably no fun but darn it – I don’t want Ty to be experiencing this and there is absolutely nothing I can do about it. There are migraine diets and meds of course if it is that but I doubt I would be okay with any of that for Ty (he is difficult enough to feed as it is). If it’s seizures, then what? I have no idea. Jim and I both keep asking questions about the what if’s but we really have no idea. I won’t even entertain the brain tumor idea.
We have been asking ourselves if there is a trigger. He patched before bed last night and wasn’t wearing his glasses for a couple hours. He had OT yesterday and was doing some positional gravitational exercises that had him white knuckling it so could that have affected him hours later? Ty does have gravitational insecurity as part of his sensory processing disorder issues.
Oh. My. I. Just. Don’t. Know.