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Hi there (UPDATES)

Wed, 08/28/2013 - 09:41

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

Submitted by tashyluv on Fri, 2013-08-30 - 05:20

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

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

Submitted by just_joe on Fri, 2013-08-30 - 17:19

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

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

Submitted by just_joe on Thu, 2013-08-29 - 16:47

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

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

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