Twitching and Jerking

[josey]

Hoping someone can run through this with me.

When DD was born we were told she was having fits, then they werent sure they were always fits just her movements breaking through.

An EEG showed no seizure activity so they weaned her off one of the meds.

She then developed a mild tick like movement of the head, consultant was too bothered though increases other meds per growth to keep it under control.

She had another EEG booked and the night before took a flu, had temp of 42 so wasnt well when EEG taken, this one showed spiking, which they thought could be illness, just the brain activity due to the damage, but as there were no obvious seizures, her neurologist, wanted to treat the child not the EEG.

ANYWAY I will get to the point.....she is having a jerk movement of the head and arm/shoulder it happens when she is about to be sick or has wind/reflux and passes as soon as the problem is cleared.....she cries after each movement and pouts her lip and looks at you as if begging for help. Again consultant thinks this it just HER (possibly a process her brain is going through to deal with the pain/problem.

Also recently she has started twitching at the corner of her mouth and her eye brows.....this looks as though it could be facial expression coming in though so does the consultant and SALT....though they have never seen her do it.

What is your views on this if you have see something similar?

Sorry for long ramble

ds was 14wks premature, when he was about 4 months old they thought he was having seizures so loaded him up on phenobarbitone and sent him for a 24hr EEG which showed nothing, weaned him back of the phenobarb and that was the last we heard of it.

he has dystonic cp and is twitchy and jerky at certain sounds etc and does a kind of dystonic spasm when he is upset/has reflux etc, his head turns to the left and his arms bend at the elbows and go to the right, one leg bends up and the other shoots out straight, hard to describe so i'll stick a photo up on my profile page, it seems to be very painful for him but can last only a few seconds, although sometimes a minute or two.

Thank you Glitteryb that sounds EXACTLY that same as DD head to the left, left arm kind of bends and jerks to the right on occassion when it is very sore looking she kind of makes a funny lip smaking sound.

DD was also full of Phenobarb and Clanazipam(sp)which she still gets 0.17mls twice a day silly amount.

So what do they say about the movements?what does it mean for them apart from seeming painful?

Just saw photo, yep pretty identical

Josey - your DD and my DS are twins I'm sure!
He has always been jerky and numerous EEGs showed no epileptic activity (till the infantile spasms ). Neuro explained it to us as part of his brain damage which will predispose him to epilepsy. DS is ALWAYS much worse when ill or tired. We also know when a dirty nappy is appearing coz of an increase in his twitches!
Back when he was about 6weeks old, he went thru a time of very severe and lengthy facial twitches which were upsetting for us and of great concern to his neonatologist.
They lasted about 4-5 days and were followed by his first proper smile (he's hardly stopped since). May be a coincidence, but I like to think that all those mis-firing synapses can sometimes do a bit of good - new neural pathways and all that (no knowledge to back this up at all, just how I feel).

DS never seems at all bothered by his general jerkiness, and coz of his IS he is EEG'd regularly. If you are concerned because of the change - speak to your neuro and see if you can get a new EEG to put your mind at rest xx

i videoed him doing it as well to show the neuro, they confirmed it as just regular dystonic spasms, he is on sinemet and nitrazepam for them but we cant up the dose till he gains more weight and he's been on the same dose so long now its not having much effect.

he currently has me up roughly every two hours through the night, sometimes more if he manages to puke up his medicines and is particularly bad during the day when sitting in his supported seat, which is like a catch 22, he has low tone in his trunk and neck so needs the support but the dystonia makes him fight against too much support/restraint therefore every sleep system we ever tried made him worse, if thats at all possible!

i have been told that its something that will likely never be "fixed" but may be able to be managed from time to time with drugs

whats your dd's story, was she prem, full term, diagnosis etc, hope you dont mind me asking?

FB I just looked at your profile, my DD is 11 days older than your DS.

I havent actually met the Neuro he has seen my DD in NNU and studies everything on her but to save me travelling with 3 kids, goes through her regular community consultant...she is fab and is known at the hospital as Jesus Christ her initials are JC and she is amazing.

She thinks its all a break down of things. I said to you re DD you can tell her happy face etc but its very botox looking (bit like Danni Minougue lol) she does a proper windy smile just before she wakes. All the movements she has learned to do have been just before she wakes and they seem to develope from then so Im hoping for a lovely big smile soon........all these movements have come in since her NGT has gone and her PEG in also she is move vocal since NGT gone.

No No ask away....Im very interested and like other peoples views on my possition, who have 1st hand.

Olivia was 1day early, she was born after a 2hour labour with her cord round her neck, her heart was beating slowly but couldnt catch a breath, the Vit K to the bum finaly got her to breath.

When she got to NNU she began slowly shutting down her organs and lost the ability to control temp.

DD has a lot of voluntary movement, but 1st movements were robotic and rythmic so she was always being druged, until they realised if you picked her up it stopped and it was usually colic etc. She could suck had no gag no cough or swallow..Im super proud she can feed orally now.

DD is strange in the fact that if you show her how to move she responds and does it. Example she can be kicking and one leg moves a bit more than the other so if you move the other leg she then gets it and moves them at the same time IYKWIM. Or show her how to work a toy by hitting it, it takes her time but she can get it....very slow process.

Can I ask where are you in Scotland, Im just outside Aberdeen, was from outside Inverness.

Glitteryb do you use an overnight pump for your DS?

I have noticed that when I turn DDs pump on it wakes her and she can start this movement or just grissle for a while...she get very disturbed by it.

the reason i ask is i was told dystonic cp is more common in full term babies so god know what happened with ds, although he has a habit of doing things differently!
i could see his type of cp was dystonic by the time he was around 18months but the physio argued with me that it was only full term babies that developed dystonic cp! neuro at the sick kids in edinburgh confirmed he was dystonic.

the movement is very similar to ATNR one of the primitive reflexes which if it doesnt disappear by a certain month can be indicative of motor problems, it took them a while to decide this as ds was sooo premature everything was being put down to him not having caught up yet.

no i dont pump feed, he's too good at pulling out the buttons i'd hate to think what he'd be like if it was connected all the time! ds also jerks at the least wee unexpected noise, but not at loud noises that he's expecting IYKWIM?

im just outside Glasgow by the way, i have relatives up that way in Alness, think thats kinda near Inverness?

It was Alness I lived in before I moved here(small world, I usually say Inverness as no one has heard of ALness), a lot of my family are from Paisley My Aunt works in a Special school in the area cant remember what it is called, she is the head and has an OBE for her work she assesses all the SN schools in Scotland. She helped my with sensory ideas for DD.

DD doesnt have a clear DX apart from what NNU say which is Spastic Quad retard dont bother with her strap her to her chair and get on with your other kids!

The ATNR has gone so they are really pleased with this, the startle is starting to fad also, which is pleasing them....she had no relexes at all to begin with once pheobarb was removed they started to appear.

Your DS is really cute by the way he looks a right character.

heh heh small world right enough, ive never been, but it looks lovely!

at the NNU, thats disgusting!!

oh yeah he's a character all right!

Its a Dive!!! glad to be away to be honest....I couldnt have brought DD up there. My MIL and other In-laws still live there so have to go back on occassion.

Glitterby just wanted to say thank you.....spoke to consultant this morning and as it seems to be Reflux only that sets it off she has upped her Reflux meds. We will see if that helps the amount she is having. Then we will see if anything else can be done.

great, hope the extra dose helps!