MRI and Admission to EMU scheduled

[Msimpson]

My son, who is 3, just recently saw his neurologist for a follow up. The doctor has decided to move forward with a sedated MRI and 24 hour stay in the Epilepsy Monitoring Unit at our children's hospital. While sedated they will also conduct a microarray test to check for any genetic abnormalities.

He continues to have episodes that we cannot explain. The most recent one happened on fathers day. After his bath my son fell asleep in the recliner. Our older children had already made a pallet on the floor so my husband moved my son to that pallet. A while later my older son told us that he was crying. I went and sat by my son. His eyes were open with tears coming out but he was not making any sound and his entire body was shaking/tremoring. He did not respond to my being there but I covered him with a blanket and sat with him. Once the shaking stopped he started to cry (making noise), he looked scared and we thought he was going to throw up. He never moved from his spot off of the floor and eventually rolled over and went back to sleep. His neurologis thinks that this might have been a night terror although she says shaking isn't characteristic of a night terror but she said crying isn't characteristic of a seizure.

Back story: my son began seeing the neurologist in March because he was having tremors in his hands and at daycare while sitting at the table he had a spell where his entire body was shaking. When he saw his neuro for the first time she said that it sounded like he might be having seizures based off of everything that we had described to her. His EEG came back normal and we were told to follow up in 3 months.

I am not sure what is going on, but I am looking forward to getting answers.

 

[Nakamova]

I hope the MRI provides some answers. Has the neurologist suggested any treatment, or are you in wait-and-see mode?

 

[Msimpson]

We are in wait and see mode for now. He also is speech delayed with fine motor issues in his arms. Neuro says it could all be related.

 

[donnajane]

Hi, I just read your post where you said your son had hand tremmors. That is pretty much how my sons seizures/events what ever they are started when he was around 7 or so months old. Sorry this is a looooooong post but you may or may not relate to some or more of it. Originally they were only every now and then maybe a couple of day. His arms would often go staight and then tremmor. They progressed to at times his arms locking straight, eyes open like he was in shock and arms and face etc tremmoring. It was quite confronting to see a child do this. GP told me he was just doing it for attention!! Thankfully he did it in front of another GP and she immediately wrote a letter to his Paed and the Paed booked him in for an EEG. One night he was screaming and kept having these tremmors off and on for 30min so I took him to the ED at 3am. They looked at him and said he looked fine, even asked me if he was my first child, I then showed them the footage they immediately admitted him. Booked an MRI which was later cancelled due to him having bronchiolitis. He was in hospital for 3 days, had the EEG the paed booked. The EEG came back normal although girl doing the test called in another dr to watch him as she was sure something was happening when she flashed the lights but nothing showed on the EEG. When in hospital they found out he couldn't hear, they rang a bell next to each ear and he didn't even blink. On discharge they made him an appointment at audiology. We went along a few days later and I was told he had a significant hearing loss as he was not responding to anything, he was having these stranger tremmors during the test. They organised a sleep hearing test for the next day as they could not work out how he had passed the newborn hearing test. In the sleep test he was not tremmoring and was found to have very good hearing. We were told when he is having his events he can't hear. He had another 24 hr EEG and told nothing really showed yet I watched him jerking around on his bed as he slept as I stayed awake all night to record his events! His tremmors increased in number and started to becomme clusters, still only a few seconds each but some clusters of 30 or so in under 8minutes. Some days ther were over 150 events a day and he also had started having events where he would go emotionless and fall sideways or to the front. I rang the hospital to speak to the Nureo who had seen him and was told its just "Shudder Syndrome" if you are worried which you don't need to be go back to the ED and they will decided if I need to see him!!!!!! Thankfully his receptionist was really nice and gave me the number of a private nureologist who has been a blessing to us. Although he can not find out what is going on either, hence the MRI etc this week he said he would rather be cautious than to miss something which is horribly wrong as something in his gut is telling him something is very NQR. My son has now had 5 EEG's it was only his last that something showed. The back right side of his brain is slower than it should be and his eyes rolled during the flashing lights, but EEG barely altered. His tremmors only happen a few times a day now but he has so many other weird and "wonderful" things happen that I am glad everyone is still looking for an answer, he has had drop events, lots of uncontrolled arm movements, head to shoulder spasms uncontrolled, vague outs where he goes to the side or forwards eyes totally blank(They think absence seizure), weird events where it looks like an invisible force has thrown his body backwards across a chair, eyes rolling, often losing the ability to walk/balance when he wakes up after his afternoon nap (not all the time though just to add confusion), his face can puff up for no reason, he gets strange face rashs which come up within 10 minutes and then go 15minutes later but when you see them they are so red there is no way you thin they could go within a few days let alone minutes, he gets black in the corner of his eyes and like the rash they come and go, he often sweats excessively when he sleeps but usually only his afternoon sleep and again not all the time (it is so bad that he soakes through his clothes and sheet and towel under his sheet), he has events/seizures overnight when he sleeps, periods where he can be emotionless for well over 30minute, he has the weirdest bowel actions and there seems to be no link to any food we can find. His development is quite strange originally he was developing ahead then it was as though he almost stopped until 12months old, I blame the amount of tremmors he was having as it left little time for development. At 13 months we were told he was almost 6months behind developmentally. Now he seems to have come good again but then has days/periods where he forgets things, he often gets stuck under things like a table which he just needs to bend his head 1cm to get out he keeps hitting his head looking confused and to why he can't get out. He often doesn't react when he gets hit on the head or hits his head but I wonder if he is in one of his "event" states when this happens even though he is moving. His Paed is almost convinced now it is a metabolic issue so was thrilled when the Nureologist agreed for the referal to see the metabolic specialist clinic. She is saying metabolic as things seem to change all the time. His Nureo prescribed Tegretol around 5 weeks ago after seeing footage of him not being able to walk after waking up. He has some good reactions with this as he is now able to interact with others where as before it was pretty limited, his seizures are not quite as many but still present. I will be honest I don't really care what is the cause so long as they can let me know how best to help my son maxamize his potential and my only worry is that it is something which may develop, if left untreated, into something very life altering. At the start we were told he will grow out of it hence all the specialist waited now its been going on for over 10months they are getting more concerned. 10months may not sound like much but it is more than 1/2 my little mans life.
Sorry for the long post. As you can see I am on a quest to help my son.

 

[Msimpson]

10 months is huge considering that they are rapidly developing at that age. My son is about 6 months delayed. He will start Pre-K in the fall with PPCD support and receive speech and occupational therapy at school. Fortunately I am a teacher and he will be on campus with me so I am always close by. Your son is lucky that to have a mom who works endlessly to help him. Best of luck!