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Hi there (UPDATES)

Hi there my name is natasha and I have just joined today.  I stumbled upon this site whilst researching about my 3 year old daughters symptoms. I think she maybe experiencing absence seizures and mycolonic(sp) seizures also.

We have been to the doctors twice. At first I was concerned about her sleep. From the age of 6 months she has slept through the night maybe 10/15times.....my daughter turns 4 in november.  She can wake numerous amounts of times theres no pattern.

Then about 3 months ago I noticed what I was referring to as a twitch.  Its the same everytime she does it... her mouth twitches then she shakes her head ( not violently,just like shes saying no).This lasts about 5 seconds or so.  This can happen 10/15 times a day....well the ones that I notice.

I explained this to the doctor and she told me to get a video of it so I can show her.  I got two videos,one while she was awake and one while she was falling asleep ( its worse when shes falling asleep ).  They have referred me to a paediatrician and he also mentioned an eeg. (this was yesterday)

However yesterday I decided to film her sleep. I always knew she moved around and twitch a bit,but never put two and two together.  When I was filming her, her hand started twitching, actually it was worse than a twitch. very quickly her hand opened, closed, pointing fingers and so on.

I dont really know what else to say apart from I am interested to know what the process will be so I can kind of prepare my daughter,she was very scared at the doctors appointment and she can be a bit anxious  around strangers/doctors, especially since she had her immunistations 

All my family keep telling me its just a twitch and it took a video for them to even start questioning it. So ive kinda been feeling alone and frustrated recently.

Should I go back to the doctors about a sleep study or would this be something that the paediatrician will deal with.

Thanks for listening xxx

***UPDATE***

My daughter had her appt yesterday with the ped.  I showed her the videos and she also made my daughter hyperventilate which she reacted to.  The ped agrees that it is definitely some sort of seizure but we need to pin point what type it is. Doctor mentioned Focal or Generalised which I have  learned is either the whole brain or part of the brain...if im right.

Anyway im just glad we are getting somehere if you know what I mean

Comments

Re: Hi there

Honestly, it doesn't sound like epilepsy. Everyone twitches in their sleep. When you have evening seizures, the whole bed will shake with convulsions and/or, people hit themselves and wake up bruised. I think that you are over thinking this. Best wishes and I hope that you find your answers.

Re: Hi there

"When you have evening seizures, the whole bed will shake with convulsions and/or, people hit themselves and wake up bruised".

This is not always the case with nocturnal seizures, which is why the
other responders are suggesting this parent have her daughter thoroughly
checked over.

At first I took immediate offense to your comment, but I'm now over that :)  I have nocturnal seizures but fortunately not the tonic-clonic kind. It is a sore spot with me because for nearly a year I was misdiagnosed for the very reason I did not have tonic clonic night seizures. They were later identified as complex partial.  So, you are not alone in your belief and even some neurologists believe this.

If this little girl does have a form of epilepsy and it is identified sooner rather than later, medication may help stop whatever type of seizure the girl has, and she and her family can perhaps avoid the trauma of her ever having a full tonic-clonic seizure.

 

 

Re: Hi there

Guys, no need to be upset. It could also be Tourette's and many other things, not just epilepsy. I did not mean to offend anyone, we are not neurologist, just regular folks trying to help. Let the doctors give their professional opinion. Peace and bet wishes.

Re: Hi there

Well thanks everyone for your help and advice. 

At the moment I am waiting for an appointment, an H.V told me it could take up to 12 weeks.

I definitely do not think I am over thinking, my daughter is doing something that is not normal and I am trying to figure out what it is.   Epilepsy or not, I know somethings going on. I have been to a few different forums trying to figure out what the symptoms could be, but many illnesses have very similar symptoms.  In the meantime im just researching and trying to figure out what it COULD be.

I will keep you updated x

Re: Hi there

Good for you.

If I posted something that might have gotted someone upset I am sorry. I also know that may things can and do cause twitches and there are many things that can and o look like possiable seizures. I got upset because one person said that twitches happen all the time at night or when someone is sleeping. Well I know that but I also know that an EEG will show any abnormality and those abnormalities should be looked at. Back when I was diagnosed a neurologist took care of anything having to do with the central nervous system in any way. Epilepsy is just one thing that they can see. If your getting an EEG one abnormality would be seizure activity and that is basically epilepsy other activity would be another disease.

You have a better chance of finding more things out than my mother did. Because when I was diagnosed we hadn't goten to the moon yet. That happened the summer after I graduated. Technology has come a long way in those years. So has the medical industry and the doctors.

I am glad your daughter has a mother that wants the best for her and will try and find answers to her questions. I wouldn't be here if it weren't for a mothers prayer.

Good luck and I do hope you get your answers soon and your daughter gets seizure free

Joe

Re: Hi there

At first I was upset by your post. I have given it time

I wanted her to check with the neuro because the EEG would show ant abnormalities be they seizure activity or relating to something else.

As for twitches those twitches could be seizures. Understand under types you have a list of several things absence seizures,partial seizures,complex partial.generalized,tonic colonic and so on. The list can get long. Under each there could be several things listed. What one epileptic has another epileptic may not. Take auras for instance, Some people see things others have a flash of light me my aurasare a different feeling in my head.

I have grand mal epilepsy, pettit mal epilepsy and focal motor epilepsy. Those are the NAMES of epilepsy. Under each name there are types. With those names of seizures the list of types I have would be almost every type there is. My first seizures were little twitches. Some when I was asleep others when I was awake.

I had many EEGs but it wasn't until I fell asleep in one that the doctors found any seizure activity. I also know that there were many times I was written up for day dreaming in class. Those too could have been seizures because I had one of th highest score in class.

I hope you understand I want this lady to do what I think needs to be done

I hope she does what is right for her and her child

I also hope you get seizure free because I know what living with epilepsy is like. I have only lived over 50 years with it and dealt with the problems as they came along. Neuros today along with new medicatins can and do help many. So does setting back and analizing the information posted and using common sense.

Good Luck

Joe

Re: Hi there

Afternoon

You mentioned a visit to a paediatrician who wants to give your daughter an EEG. By all means do go there an take the videos. The EEG wil; show any abnormalitite in the brain an some of those could be seizure activitie. If he sees those he could know where the seizures may be starting. The videos will also give hi addidtional information.. The moe infornation the doctor has the better he can determin medications procedures and even possiable triggers.

Also yu might look at starting one of the diaries near the top of the white porting on this page. Especially if the paediatrician wants to put her on medications because thos and their dosages are in there and any possiable side effect are also there so they can be followed whic will also help. Her seizures can be listed which would also help because one of the first question I am asked by my doctors is How many seizures have you had.. Oh and the diary can be sentto the doctor or to yourself so you can print it and take it to the doctor

I hope this helps an she gets seizure free

Joe

Re: Hi there

Hi......good for you for noticing something different.  The video EEG will confirm for you the best I believe.  My daughter did this and the results showed this........lots of twitching.......some were epileptic and some were just twitches.  But she was diagnosed with epilepsy and never had a grand mal or tonic clonic as they are called now.  By chance is she still a bed wetter?  Mine was a bed wetter extremely late and it wasnt until she was correctly medicated.    If this is "nothing" now........it may be an indicator of something more to come as puberty hits.  Mine twitched at 3 and I never really thought much of it..........around puberty it did get worse and we did the VEEG and got the diagnosis.   Keep us posted on this outcome.........please update

Tonya

Re: Hi there

*it did eventually progress to tonic clonic but now we are twitch and seizure free for over a year.....

Re: Hi there

Yes she wets the bed 99.9% of the time even after waking and going to the toilet.

Re: Hi there

It is definitely worth following up on, to get a sleep study as well as EEG.  Continue to record her sleep from time to time, the more often the better.  Good luck!

Re: Hi there

Don't stop the tests until you are 100% certain of the cause of her twitching.

I sometimes have "nocturnal" seizures....seizures while sleeping. One may occasionally occur around 30 minutes after falling asleep.  My first seizure was nocturnal, and I ended up falling on my face. I would let her sleep in your bed.   

Re: Hi there

hey,

I understand why your worried about how your daughter will react to the appointments and what she should expect, shes very young and may find the situation scary, i know my baby sister is terrified of all doctors. However, the fact that you will now be dealing with a paediatrician is a great thing, they know how to make little kids feel at ease, hopefully he/she will make the experience fun for her. I know my hospital appointments as a child were much easier than they are now. As far as what to expect, her first appointment will probably not involve an EEG or any major tests, the waiting times are not good but that will give you plenty of time to prepare and maybe practise with her. My first appointment was very basic, with tests like blood pressure and heart rate, they also asked a lot of questions so try and prepare yourself to be as clear and precise as possible, i think the video will definately be helpful. I hope things work out well for you and your little girl.

Good Luck!

Rebecca