When Theo was young he was able to lay on his right and left sides without any issues (although he would need help getting there). When he was six months old (February 2018) he had his first embolization on his brain aneurysm. Between his first and second embolization (September 2018) I noticed that Theo liked to lay on his left side and favored it highly over laying over his right side. After Theo’s second embolization I only saw him lay on his right side a few times. After his third embolization (October 2018) Theo had a three week long hospital stay, stopped eating, and lost a lot of muscle and fat. During his long recovery we noticed that if we tried to put Theo on his right side or if we tried to roll him over his right ear he would scream and cry (and sometimes vomit). It would take a long time for him to calm down. No one could ever explain this to us and Theo couldn’t tell us what he was feeling.
Over the last few years we have been working a lot with his Physical Therapist and Occupational Therapist to get him to roll over his right ear. It has been a huge struggle. Anytime we encouraged him to roll over his right ear or even lean to the right during sitting he would have the same reaction: screaming and crying.
However, over the last few months we have been really pushing Theo and he has been responding greatly. We can now roll him over his right ear without him crying. He will even lay on his right side, but he won’t put his right ear to the floor.
At the beginning of October 2021 we noticed that Theo would sometimes lift his left arm into the air and turn sharply to the left when he was laying on his back.
If he is standing then he will throw his arm out and turn to the left.
He would hold his position for just 2-3 seconds before going back to what he was doing. We thought it was possibly a reflex reaction. During the reaction his eyes would get large and his body would stiffen. If I am close to him when it happens I can see that his eyes move quickly from side to side about three times (nystagmus). I’ve seen his eyes get like this when he is spinning in a swing. He is completely responsive during these reactions. I don’t know if he is experiencing temporary dizzy spells and this is related to his issues with rolling over that right ear. We went and saw the ENT in November (just a month after these episodes started) and they found he had a clogged left ear. So could these dizzy spells be related to his clogged ear and his equilibrium being off? We are hoping these episodes will stop once that ear tube gets replaced in March. Our PT and OT believe this is all related and that his vestibular system may be waking up.
We wanted to wait until after Theo's ENT procedure in March before we reached out to any more doctors about these episodes. We were hoping that the episodes did have to do with a vestibular or ENT issue and they would stop after his procedure.
I received a call from Theo's school the other day and it was the district nurse. She said she had been working with Theo over the last few days and she is very worried about these episodes and that they looked like seizures. She told me that kids can remain alert and even continue playing (like Theo does) during seizures. There are so many different types and they can all present differently. I told her our plan was to wait until after Theo had his procedure with the ENT to reach out to Neurology, but she said we shouldn't wait. I trust her judgement and so I immediately reached out to our Neurologist and sent him pictures and videos of Theo.
The next day I received a call from the Neurology nurse. She said that the Neurologist is not "too concerned," but with Theo's extensive history he feels that it would be a good idea to do an EEG (wake and sleeping). Even though Theo's EEGs always come back "abnormal" they feel that if he has one of these episodes during the EEG they may be able to see what it is.
I was able to get an EEG scheduled for early March and we have an appointment with Theo's Neurologist a week later. Fingers crossed that we get some answers!
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