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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 just_joe on Wed, 2013-08-28 - 14:47

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

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

Submitted by jtklwalls on Wed, 2013-08-28 - 19:58

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

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

Submitted by jtklwalls on Wed, 2013-08-28 - 20:00
*it did eventually progress to tonic clonic but now we are twitch and seizure free for over a year.....

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