Hi everyone,
I decided to start a new topic on this so it gets read rather than just answering another thread.
I need to talk to someone about seizures in sharlet. I'm
pretty sure she is having them. She doesn't usually drool much
anymore, but sometimes even right in the middle of interacting with
someone or something she will just stop and her face will loose all
expression and drool will run out of her mouth. This can last for
seconds or minutes, and she is unreachable, gone.
She
has never had EEG's or anything like that because I don't think the ped
who dx her wanted to waste the time or money just quietly. She sort of
acted like there was nothing that could be done for Sharlet and she was
a lost cause. Her GP knows zero about autism too so I think I will
talk to someone at EL.
Who should I be looking for to look into seizures? I have never had any testing done with Sharlet before and I don't know who to go to first.
Also does this sound like seizure activity to you?
Allegra,
Lachlans pedi had brought seizures up very early on when we were first looking at lachlans progress. I was concerned at that time about drooling and she said that sometimes the seizures can be so small you could almost miss them if you were not looking for them. She had us wait a few months and Lachlans drooling cleared up but I believe it was an ECG or MRI that she wanted to do. The reason she put us off at the time was because Lachlan was young and she said that it could be a little traumatic for him.
If Sharlet is zoning out during a conversation i would push a little further just to cover all bases. Maybe you could video tape her and show the doctor?
Hi Sharlet,
it does sound suspicous and worth following up on. When she spaces out have you tried snapping your fingers, or clapping your hands to get her attention? If she doesn't respond, then it makes it more likely to be seizures.
You need to talk to a neurologist, and they should order an eeg, preferably a 24 hr veeg. Also, it would help to start logging the date, time, and duration of each event, and bring that info with you. It may also help to note if she is hungry, or sleepy at the time.
Hope that helps.
Alegra--exactly what smith just said...you need to get in touch with a neuro...preferrably a ped neuro...the only way they are going to know for sure is with an EEG...it is a painless procedure, but knowing Sharlet's history, she might be a little harder with the EEG...Mason was a lot like Sharlet...he hated to be touched, baths were a nightmare! So just the touch of them trying to put the leads on his head was horrible...for a short term EEG, which usually lasts less than an hour, they just use a paste...with long term they use more of a superglue thing...it needs to be dried with an air compressor...Mason hated the air blowing on him and hated the noise...children can be sedated, but it usually isn't recommended, because they want to get as clear of a reading as possible...but maybe with a long term EEG, which lasts at least 24 hours, the sedation might be the way to go if you are worried about how Sharlet is going to respond to getting hooked up.
Believe me the sounds coming from the kids is much worse than it really is...it's heartbreaking, but it's really the only way.
But yes, like Smith said, until you get into the neuro keep a seizure log...anytime you see her staring off you log it...right down every time it happens, how long it lasts, and what she was doing at the time. Also during the staring clap or snap in their face, if they aren't responding that is a red flag...most children can't ignore that.
Good luck and if you have any more questions, feel free to PM me...we have been dealing with this for a few years now...also what you are describing sounds like complex partial seizures to me...you can research that and they go a little more in depth about what they really are, what they look like, etc...I like the website www.epilepsyfoundation.org but any google search will give you lots of info...plus they will usually give you a little insight on what types of meds that work the best for these seizures, and unfortunately meds are going to have to be an option...there is a diet that some people use, but it is a difficult diet and that is usually a resort after meds don't work or in combination with meds.
But if you have anymore questions or if you speak to a neuro and they want to do the long term EEG let me know...we have done a lot of those and I have gotten pretty good at things to bring to keep Mason occupied because it isn't the easiest thing to do with a child that has autism. Good luck and hugs!!
yes, good idea smith22, I will keep a diary. She has no functional speech so it's not like she stops mid sentance. But it is quite noticeable often, say I'm singing a song to her and she is doing the actions and half way through she stops and her eyes glaze over and she starts to drool and look like she isn't focusing on anything. I have tried very hard to get her attention at these times and she is just not with us. I just assumed it was an autism thing and that seizures were like fitting as in a classic epileptic fit. My ds started having seizures in Feb. with a virus and began seizure medication. I agree that this is something that you should look into. After ds started taking his meds we noticed an increase in his eye contact and willingness to touch things. We brought it up with his neurologist and she said that they have found kids who are on the spectrum sometimes do well on these medications. I wonder if he was having mini seizures all the time before this.
Nicki is spot on with the stress of getting the leads in place, Zach's first eeg, and 2 following veegs were all sedated, because his behavior is so difficult. Zach just had an ambulatory eeg (should still be wearing it), but he only lasted 36 hrs. Any way he was not sedated this time, and what was wonderful was that the tech used tape that does not need the air compressor. I wish I knew what it was called, but it was so easy, he sat in a recliner calmly watching TV, and leads stayed in place really well. The air compressor terrifies Zach, and they did use it at the very end to glue on the "cap".
Also, something to look for when the blanking out episodes stop is to look at Sharlet's pupils. Zachary's pupils are always dilated right after his complex partials. Sometimes it is only one pupil that is dilated, which I'm assuming means the seizure was on one side. It doesn't always happen in every person, but just another symptom to look for.
Good luck.
Yup, a pediatric neurologist is who you need. ( Does anyone know Dr. John Gaitanis? He is an excellent excellent ped neur and his concentration is in seizures... he was in Mass. but I think is now in NJ)
She may be having petit mal seizures. I thought my daughter was also since she was a baby. My mother used to comment that she was having another petit mal seizure. Eventually I brought it up to the ped and they sent her for EEG. It didn't come back very promising so they sent her for a 24 hr ambulatory EEG and that was negative for seizure activity.
Her blanking out must having something to do with her hyperfocusing or losing attention....not sure. She has neen doing it for over 5 years now.
[QUOTE=Allegra]I just assumed it was an autism thing and that seizures were like fitting as in a classic epileptic fit. [/QUOTE]
Even though they are often seen 'together', it is still something that should be given attention. Obviously meds don't 'work' for everyone, but seizures beget seizures so you want to stop them.
[QUOTE=NJmom]She may be having petit mal seizures. I thought my daughter was also since she was a baby. My mother used to comment that she was having another petit mal seizure. Eventually I brought it up to the ped and they sent her for EEG. It didn't come back very promising so they sent her for a 24 hr ambulatory EEG and that was negative for seizure activity.
Her blanking out must having something to do with her hyperfocusing or losing attention....not sure. She has neen doing it for over 5 years now.[/QUOTE]
It could still be seizures. Petit Mal seizures = Absence seizures and they have a very specific EEG reading that is supposed to be there at all times, having a seizure or not. BUT - a Complex Partial seizure can look like an Absence but is generally a bit different (for instance average duration for Absence is 3-5sec. where a very similar looking Complex Partial would be longer - Cassidy's are 45sec. to a couple of min.). & With an EEG, they would have to be having a seizure during that EEG for it to read seizure activity. (Or in Cassidy's case, one of her EEG's showed slowing which meant that she had either recently had seizure activity or the potential was greater... but she'd also had an abnormal EEG with seizure activity so they already had the documentation.) EEGs are so tricky, they are SO necessary to get the information needed, but sometimes so difficult to get that information. :(
Anyway, just wanted to add that... Hugs! :)
Allegra
My youngest has been having seizures quite a bit lately. There are several different types of seizures so it depends on the symptoms. My youngest was having partial seizures which are smaller seizures that last only a few seconds and can happen anytime. He did not drool but he would convulse when sleeping and be lethargic for a bit. Grand Mal are your classic seizures where the person has the full out body seizures and is lethargic for an hour or more. If awake they tend to sleep and be unarousable for a while. The other type is febrile seizures these are really common it is like a 1 in 5 chance that a child will have one when they are running a high temperature. Epilepsy is the most common and it is where a child or adult has more than one seizure in a certain time period (i.e a couple of days or weeks). My youngest is also not verbal so he can't tell me. Sometimes an EEG which can only take an hour for the short version will see them. If they don't they can always do an overnight EEG where they will look for the brain wave abnormalities while she sleeps and track any seizure activity. If you suspect it is happening you can also take her to the hospital ER right after and they will be able to tell through a CT scan or EEG there. Also keep a journal of any symptoms and how many times it is happening. I know with our EEG my ds hadn't had a seizure in about a week and half so it didn't pick anything up. Now we are waiting for another one and then we will do the longer EEG to see if they can see it.
I'm so sorry that you have possible seizures on top of all your other worries, Allegra.
I would definitely try and get this checked out. I assume that a neurologist would be the specialist to go to.
My son had two EEGs (one sleep deprived) to rule out small seizures as an explanation for his problems with attention. They were no fun -- the sticky electrodes were a sensory issue for him during the second EEG -- but I'm glad they were done, and that the results were negative.
Good luck with everything!