Is this a Seizure

[Guest guest]

I have read through threads relating to seizures and the relevant

links mentioned there but am still not sure if Connor is having

seizures or if so what type and if not what is happening.

Connor is almost 12 months old and has an as yet undiagnosed

Mitochondrial disorder, which has caused problems with his brain

with the major focus being damage to the basal ganglia and some

atrophy (not sure what this all means but I'm sure it will be

explained in due coarse). The mitochondria don't produce enough

energy in the brain, so the cells in the brain get irritated and

eventually die, so a normal brain gets damaged gradually.

My son was born with many symptoms of the disease (hearing, eye,

hypotonia etc) and some others, which don't seem to fit the bill

(Short arms and legs like a dwarf). But he basically lived a very

nice, healthy and happy life even though he was developmentally

behind but not alarmingly so. His life was so " normal " that there

was no suspicion that there was anything too untoward happening

behind the scenes.

Then a sudden behavioural change (3 weeks ago)where he became very

niggly unhappy and had episodes where he had no control of his

movements - these have been likened to seizures by those who have

responded to my mails. But I just want to explain exactly what

happens in case anyone can think of something else that may be

happening...maybe in addition to them.

Connor has periods of time when he is relaxed, calm and relatively

interactive (before this happened he constantly smiled and

interacted). These are of coarse the times that make all the bad

times worth it.

But then he suddenly starts to make movements with his arms and

whole body. These you can tell are not deliberate - almost as if he

is in some sort of pain and he is experiencing severe cramps. These

become progressively worse and he becomes more and more unhappy and

starts pulling really horrible expressions, his eyes start to roll

and he looses lucidity...he doesn't close his eyes nor does he

become stiff, nor does he loose consciousness but basically becomes

uncontrollable and very, very strong. He usually if not brought

under some sort of control ends up screaming when we have to give

him a strong sedative. He then slowly comes back - although lucidity

takes a while and will eventually fall asleep generally I guess from

the exertion and sedatives.

These episodes do not end by themselves...the following works on

occasion:

- Picking him up and soothing him via rocking (this is about 20%

successful)...if we put him down he would immediately start the

process again. This seems to indicate he has some sort of control

over what's happening or it may be stress related???

- Giving painkillers or sedatives depending on how bad the episode

is. This eventually calms him and falls asleep.

So basically these would carry on indefinitely, getting

progressively worse until some sort of action (usually sedatives) is

taken. These happen constantly each day.

Our doctors are reluctant to do an EEG as they seem to think that

there is nothing to be gained from it. They were even reluctant to

do the MRI as they seemed to think he was reacting to constipation

and look what they found.

Is this a description of a seizure? If only partly can anyone think

of anything else that could be contributing to them.

If they are seizure is giving sedatives a safe way of dealing with

them - i.e. does putting them to sleep not do any additional damage.

[Guest guest]

there are many different types of seizures, what you are describing sounds like seizures, have you been to see a neuro dr.?? if not i would urge going to see one, or getting a new one.

Hailee has many types of seizures about 10, she has what are violent rage seizures where she is sitting on the couch perfectly happy than out of the blue will start screaming and hitting herself or who ever is with her.

she has grandmals, which involve total body shakes, eyes rolling up in head, drooling, stiffing of the body, than lots of sleep and she tends to get very crabby around the time and for a while after

also there are complex partial seizures which are smaller, and the person can be aware of the area and what is going on, it sounds like this would be the type your son is having..

than there are focal seizures that only effect one area.. i could go on and on and on, but i wont...

If they are truley seizures, he would be best if on meds if he is having them often enough, than use a sedative to stop one when they come, we use rectall diastat....

i hope this was of some help, sorry so long

[Guest guest]

My son has basal ganglia problems on his MRI as well, and

has what you described to a much milder degree...

When wakes up in the mornings his arms and trunk shake quite

badly. Although it does go away on its own and never progresses the

way you describe in Connor. I was told that basal ganglia damage

can cause problems similar to parkinsons, which would make me think

uncontrollable body movements would classify, however what your

describing strikes me as far more severe...

Have the doctors seen this happen? if not could you get it on

video tape for them? it could go a ways to convince them to

investigate...

I had the same issue as you, our doctor was hesitant to order

testing (MRI) because they were convinced there was no problem...

when they finally ordered the MRI they were shocked... i KNEW it

was going to be abnormal before we even went in, I just had a gut

feeling.

I would seriously push for some sort of testing in regards to this,

as Im sure you dont want Connor to be dependant on sedatives... nor

should he have to be until they have at least ruled out siezures...

an EEG is not a major procedure, its frustrating that they wont

order it just for reassurance at least...

good luck!

Keely

> I have read through threads relating to seizures and the relevant

> links mentioned there but am still not sure if Connor is having

> seizures or if so what type and if not what is happening.

>

> Connor is almost 12 months old and has an as yet undiagnosed

> Mitochondrial disorder, which has caused problems with his brain

> with the major focus being damage to the basal ganglia and some

> atrophy (not sure what this all means but I'm sure it will be

> explained in due coarse). The mitochondria don't produce enough

> energy in the brain, so the cells in the brain get irritated and

> eventually die, so a normal brain gets damaged gradually.

>

> My son was born with many symptoms of the disease (hearing, eye,

> hypotonia etc) and some others, which don't seem to fit the bill

> (Short arms and legs like a dwarf). But he basically lived a very

> nice, healthy and happy life even though he was developmentally

> behind but not alarmingly so. His life was so " normal " that there

> was no suspicion that there was anything too untoward happening

> behind the scenes.

>

> Then a sudden behavioural change (3 weeks ago)where he became

very

> niggly unhappy and had episodes where he had no control of his

> movements - these have been likened to seizures by those who have

> responded to my mails. But I just want to explain exactly what

> happens in case anyone can think of something else that may be

> happening...maybe in addition to them.

>

> Connor has periods of time when he is relaxed, calm and relatively

> interactive (before this happened he constantly smiled and

> interacted). These are of coarse the times that make all the bad

> times worth it.

>

> But then he suddenly starts to make movements with his arms and

> whole body. These you can tell are not deliberate - almost as if

he

> is in some sort of pain and he is experiencing severe cramps.

These

> become progressively worse and he becomes more and more unhappy

and

> starts pulling really horrible expressions, his eyes start to roll

> and he looses lucidity...he doesn't close his eyes nor does he

> become stiff, nor does he loose consciousness but basically

becomes

> uncontrollable and very, very strong. He usually if not brought

> under some sort of control ends up screaming when we have to give

> him a strong sedative. He then slowly comes back - although

lucidity

> takes a while and will eventually fall asleep generally I guess

from

> the exertion and sedatives.

>

> These episodes do not end by themselves...the following works on

> occasion:

> - Picking him up and soothing him via rocking (this is about 20%

> successful)...if we put him down he would immediately start the

> process again. This seems to indicate he has some sort of control

> over what's happening or it may be stress related???

> - Giving painkillers or sedatives depending on how bad the episode

> is. This eventually calms him and falls asleep.

>

> So basically these would carry on indefinitely, getting

> progressively worse until some sort of action (usually sedatives)

is

> taken. These happen constantly each day.

>

> Our doctors are reluctant to do an EEG as they seem to think that

> there is nothing to be gained from it. They were even reluctant to

> do the MRI as they seemed to think he was reacting to constipation

> and look what they found.

>

> Is this a description of a seizure? If only partly can anyone

think

> of anything else that could be contributing to them.

>

> If they are seizure is giving sedatives a safe way of dealing with

> them - i.e. does putting them to sleep not do any additional

damage.

[Guest guest]

Regardless if it is seizure activity or not; it is not normal and should be

looked into. I strongly urge you to have your doctor order an EEG and if

he/she is not willing, get a second opinion. If you have the ability,

videotape the episodes and show them to the doctors. Speaking from

experience, some doctors just don't get it when you try to explain strange

behaviors. They need to see it in person. How long ago was the MRI? I

hope you find answers soon.

Kim - Mom to and Lindsey - Partial Complex I

Is this a Seizure

> I have read through threads relating to seizures and the relevant

> links mentioned there but am still not sure if Connor is having

> seizures or if so what type and if not what is happening.

>

> Connor is almost 12 months old and has an as yet undiagnosed

> Mitochondrial disorder, which has caused problems with his brain

> with the major focus being damage to the basal ganglia and some

> atrophy (not sure what this all means but I'm sure it will be

> explained in due coarse). The mitochondria don't produce enough

> energy in the brain, so the cells in the brain get irritated and

> eventually die, so a normal brain gets damaged gradually.

>

> My son was born with many symptoms of the disease (hearing, eye,

> hypotonia etc) and some others, which don't seem to fit the bill

> (Short arms and legs like a dwarf). But he basically lived a very

> nice, healthy and happy life even though he was developmentally

> behind but not alarmingly so. His life was so " normal " that there

> was no suspicion that there was anything too untoward happening

> behind the scenes.

>

> Then a sudden behavioural change (3 weeks ago)where he became very

> niggly unhappy and had episodes where he had no control of his

> movements - these have been likened to seizures by those who have

> responded to my mails. But I just want to explain exactly what

> happens in case anyone can think of something else that may be

> happening...maybe in addition to them.

>

> Connor has periods of time when he is relaxed, calm and relatively

> interactive (before this happened he constantly smiled and

> interacted). These are of coarse the times that make all the bad

> times worth it.

>

> But then he suddenly starts to make movements with his arms and

> whole body. These you can tell are not deliberate - almost as if he

> is in some sort of pain and he is experiencing severe cramps. These

> become progressively worse and he becomes more and more unhappy and

> starts pulling really horrible expressions, his eyes start to roll

> and he looses lucidity...he doesn't close his eyes nor does he

> become stiff, nor does he loose consciousness but basically becomes

> uncontrollable and very, very strong. He usually if not brought

> under some sort of control ends up screaming when we have to give

> him a strong sedative. He then slowly comes back - although lucidity

> takes a while and will eventually fall asleep generally I guess from

> the exertion and sedatives.

>

> These episodes do not end by themselves...the following works on

> occasion:

> - Picking him up and soothing him via rocking (this is about 20%

> successful)...if we put him down he would immediately start the

> process again. This seems to indicate he has some sort of control

> over what's happening or it may be stress related???

> - Giving painkillers or sedatives depending on how bad the episode

> is. This eventually calms him and falls asleep.

>

> So basically these would carry on indefinitely, getting

> progressively worse until some sort of action (usually sedatives) is

> taken. These happen constantly each day.

>

> Our doctors are reluctant to do an EEG as they seem to think that

> there is nothing to be gained from it. They were even reluctant to

> do the MRI as they seemed to think he was reacting to constipation

> and look what they found.

>

> Is this a description of a seizure? If only partly can anyone think

> of anything else that could be contributing to them.

>

> If they are seizure is giving sedatives a safe way of dealing with

> them - i.e. does putting them to sleep not do any additional damage.

>

>

>

>

>

>

> Please contact mito-owner with any problems or questions.

>

[Guest guest]

Hi

Thanks for the reply. I have heared that damage to the basal ganglia

can cause the movement problems that I have observed. I'm sure its

all related ie uncontrolled movements cause stress which I believe

(from reading the net)can cause seizures. Maybe that's why on

occasion by picking him up and soothing him we an prevent it

progressing onto a bad episode. Doesn't quite explain why the

movements dissapear and then reappear as soon as he is not in our

arms.

With regard to videoing the episodes that's a really good idea. With

regard to my current doctors however, it's not that they don't

believe that theres a movement/seizure problem as they have seen it

for themselves...but more that it seems to me that they feel it's

pointless to take it any further as the belief in this country is

that Mito in uncureable (which it is)and any further investigation

would be a waste of time and money.

I am currently pursuing a 2nd opinion and am going to insist on an

EEG. Even if nothing can be done at least we can rest knowing we've

done as much as we could for him.

> > I have read through threads relating to seizures and the

relevant

> > links mentioned there but am still not sure if Connor is having

> > seizures or if so what type and if not what is happening.

> >

> > Connor is almost 12 months old and has an as yet undiagnosed

> > Mitochondrial disorder, which has caused problems with his brain

> > with the major focus being damage to the basal ganglia and some

> > atrophy (not sure what this all means but I'm sure it will be

> > explained in due coarse). The mitochondria don't produce enough

> > energy in the brain, so the cells in the brain get irritated and

> > eventually die, so a normal brain gets damaged gradually.

> >

> > My son was born with many symptoms of the disease (hearing, eye,

> > hypotonia etc) and some others, which don't seem to fit the bill

> > (Short arms and legs like a dwarf). But he basically lived a

very

> > nice, healthy and happy life even though he was developmentally

> > behind but not alarmingly so. His life was so " normal " that

there

> > was no suspicion that there was anything too untoward happening

> > behind the scenes.

> >

> > Then a sudden behavioural change (3 weeks ago)where he became

> very

> > niggly unhappy and had episodes where he had no control of his

> > movements - these have been likened to seizures by those who

have

> > responded to my mails. But I just want to explain exactly what

> > happens in case anyone can think of something else that may be

> > happening...maybe in addition to them.

> >

> > Connor has periods of time when he is relaxed, calm and

relatively

> > interactive (before this happened he constantly smiled and

> > interacted). These are of coarse the times that make all the bad

> > times worth it.

> >

> > But then he suddenly starts to make movements with his arms and

> > whole body. These you can tell are not deliberate - almost as if

> he

> > is in some sort of pain and he is experiencing severe cramps.

> These

> > become progressively worse and he becomes more and more unhappy

> and

> > starts pulling really horrible expressions, his eyes start to

roll

> > and he looses lucidity...he doesn't close his eyes nor does he

> > become stiff, nor does he loose consciousness but basically

> becomes

> > uncontrollable and very, very strong. He usually if not brought

> > under some sort of control ends up screaming when we have to

give

> > him a strong sedative. He then slowly comes back - although

> lucidity

> > takes a while and will eventually fall asleep generally I guess

> from

> > the exertion and sedatives.

> >

> > These episodes do not end by themselves...the following works on

> > occasion:

> > - Picking him up and soothing him via rocking (this is about 20%

> > successful)...if we put him down he would immediately start the

> > process again. This seems to indicate he has some sort of

control

> > over what's happening or it may be stress related???

> > - Giving painkillers or sedatives depending on how bad the

episode

> > is. This eventually calms him and falls asleep.

> >

> > So basically these would carry on indefinitely, getting

> > progressively worse until some sort of action (usually

sedatives)

> is

> > taken. These happen constantly each day.

> >

> > Our doctors are reluctant to do an EEG as they seem to think

that

> > there is nothing to be gained from it. They were even reluctant

to

> > do the MRI as they seemed to think he was reacting to

constipation

> > and look what they found.

> >

> > Is this a description of a seizure? If only partly can anyone

> think

> > of anything else that could be contributing to them.

> >

> > If they are seizure is giving sedatives a safe way of dealing

with

> > them - i.e. does putting them to sleep not do any additional

> damage.

[Guest guest]

, I am not sure if what you described sounds like a seizure or not, it is a strong possibility, though. I would strongly reccommend pushing those drs for an EEG. Even if a full blown seizure is not caught on the test, it could indicate abnormal brain waves and/or spiking of neurons (tendency for the brian cells to fire when they are not supposed to).

What you described could be related to pain, as you said. My daughter will get fidgety, twitchy, agitated, and startles easily with internal pain, such as gas cramps (she rarely reacts to external pain). There have been some times I thought she was having a seizure (wide eyed, twitching, and hyperventilating), but it appeared to be gas, after she calmed when passing some. Chelsea also has a movement disorder called aetheotosis (sp?), where she gets writhing and twitchy movements of the head and trunk. This comes and goes, and tends to happen when she is agitated. When she was sick over a recent weekend, these movements were constant over 2-3 days.

Hope you find some answers=)

e, Chelsea's mom, Atypical Rett Syndrome (FKA nonspecific mito)