Seizure or tremors related to something else???

July 17, 2004

Last night just after Zipporrah fell asleep she had a short

episode 20-30 seconds at most of major whole body shaking. It was

pretty fierce shaking and her breathing was much louder, but it was

dark and I couldn't see what she looked like. I was just surprised

by it and held onto her side and leg while it happened. She has had

possible seizures surrounding her two larger strokes that were

similar but less in intensity. The doctors have felt it probably was

seizures but the 15-20 minute testing didn't show anything. She has

also had muscle tremors since the first stroke and Dr. Whiteman saw

them himself and said it concerned him but didn't give any reason for

their presence. The therapists have wondered if they were from

muscle tension and I have seen them in Marquis when he was little due

to the in-utero drug exposure from his biological mother. I would

really appreciate anyone's help here. Can grand mals or whatever

else form causes whole body shaking last so short? She has been very

run down looking the past few days, running low-grade fevers for the

past two weeks with up and down temp readings, and has circles under

her eyes even though she gets plenty of rest time; although she wakes

constantly and is very restless. Thanks ahead to those who

respond.

Darla: mommy to Asenath, Zipporrah, Luke, and the other 6 kiddos

July 17, 2004

Hi,

I'm not much help in this area - only that Asher, for about a year between one and two, would get these whole body "shivers" - they only lasted about 10 seconds. I don't know how else to describe it - our Haitian babysitter said at the time that it was like he'd seen a ghost and it gave her the creeps. I think of them as tremors, but it's possible they were seizures. Asher would space out at that time as well. I remember that we were in the diagnostic process and the geneticist we were using at the time (who I would not recommend now) became worried about these and decided to do more genetic testing. They never found out anything and they stopped on their own. Now, with Shoffner's diagnosis of mito, I do suspect it was related to the mito but don't know how.

Hope you get it figured out!

Anne R - mom to Asher (3 1/2 - Complex III defect and possible complex I defect)

July 17, 2004

Grace also has some shaking episodes but so far nobody thinks they are seizures. She did have a normal EEG, also. The next step would be a 24 or 48 hour EEG in the hospital, I am not interested in stressing Grace out when whatever it is, does not seem to be a problem. I do know, however, that there are people who do have seizures and they have normal EEG's. Yes, seizures can last as short as a few seconds. I, once, knew a girl with epilepsy and the majority of her seizures were only a breif blackout without shaking. Most people did not ever even notice it when she did have one.

It definatly seems like litte Zipporah already has a virus or one is coming on. Grace commonly has the dark circles under her eyes. Most of the time it is when she is ill, but we have also seen it happen for no good reason at all. My only other thought is maybe she is getting hypoglycemic? Best wishes for everybody. Hopfully whatever it is goes away soon. I will keep her in my thoughts and prayers.

,Mommy to (9), (7), Bre-Anne (6), Grace (2) and our newest arrival is due Sept. 20thFor the latest baby info, and to see our family check out:www.BabyCountDown.com?baby=4007

July 17, 2004

has had full body tremors but no seizure activity has ever been

found. Once when she was in the hospital she had full body tremors so

bad that it set off the heart monitor. It nearly scared the nurses to

death. She also had muscle jerks at times so bad she would hit herself

in the face and her legs would come 6 in. off the couch. The tremors

and jerks come and go for no reason that any doctor has been able to

figure out. She also has dark circles under her eyes most days even

when she is getting adequate sleep. We have had to chalk it up to a

possible " mito " thing for . I know that is not helpful when you

are looking for answers but sometimes it is good to know you are not

the only person experiencing such episodes.

Shelby, mother of , age 30 yrs with mitochondrial encephalopathy

> Last night just after Zipporrah fell asleep she had a short

> episode 20-30 seconds at most of major whole body shaking. It was

> pretty fierce shaking and her breathing was much louder, but it was

> dark and I couldn't see what she looked like. I was just surprised

> by it and held onto her side and leg while it happened. She has had

> possible seizures surrounding her two larger strokes that were

> similar but less in intensity. The doctors have felt it probably was

> seizures but the 15-20 minute testing didn't show anything. She has

> also had muscle tremors since the first stroke and Dr. Whiteman saw

> them himself and said it concerned him but didn't give any reason for

> their presence. The therapists have wondered if they were from

> muscle tension and I have seen them in Marquis when he was little due

> to the in-utero drug exposure from his biological mother. I would

> really appreciate anyone's help here. Can grand mals or whatever

> else form causes whole body shaking last so short? She has been very

> run down looking the past few days, running low-grade fevers for the

> past two weeks with up and down temp readings, and has circles under

> her eyes even though she gets plenty of rest time; although she wakes

> constantly and is very restless. Thanks ahead to those who

> respond.

>

> Darla: mommy to Asenath, Zipporrah, Luke, and the other 6 kiddos

>

> Please contact mito-owner with any problems or

> questions.

>

July 17, 2004

Zipporrah has had muscle tremors that even Dr. Whiteman has

commented on since her first stroke as well as myoclonic jerks in her

sleep, still unsure if seizure type or not, but last nights was much

different. I heard her make some sort of sound and then she started

skaking violently and rhythmically. Her breathing was heavy and

quick as well. It fit the description of a grand mal except the

night was off so I don't know if she lost consciousness or not and

since she was still breathing I didn't turn on the light to see how

she was with awareness, although I am not sure I would notice

anything with that since she was alseep when it happened. Kind of in

the twighlight time frame of going to sleep. It was short thankfully

but still really threw me off. It was such an intense shaking, not

like a shiver or tremors, but violent shaking. I assume it is

probably a seizure but just don't like it to be so.

Darla

> Hi,

>

> I'm not much help in this area - only that Asher, for about a year

between

> one and two, would get these whole body " shivers " - they only

lasted about 10

> seconds. I don't know how else to describe it - our Haitian

babysitter said at

> the time that it was like he'd seen a ghost and it gave her the

creeps. I think

> of them as tremors, but it's possible they were seizures. Asher

would space

> out at that time as well. I remember that we were in the diagnostic

process and

> the geneticist we were using at the time (who I would not recommend

now)

> became worried about these and decided to do more genetic testing.

They never

> found out anything and they stopped on their own. Now, with

Shoffner's diagnosis

> of mito, I do suspect it was related to the mito but don't know how.

>

> Hope you get it figured out!

>

> Anne R - mom to Asher (3 1/2 - Complex III defect and possible

complex I

> defect)

July 19, 2004

Darla, not sure if you found an answer, but it sounds like a grand

mal seizure to me. Was the sound she made very different than any

other sound she has made in the past? And then the shaking of all

limbs started. That is exactly how Wyatt's seizures are. A scream

that is very distinctive, and then the limbs begin to shake. Very

systamatic or rhythmical(spelling). There is no way you can stop

the movement. Wyatt has had seizures like that that have lasted

only 10 seconds and some that last up to 4 minutes, which seems like

a half hour when you are waiting for an ambulance to arrive with

oxgyen. Side track. My suggestion would be to watch exactly what

happens if it happens again so that you can explain in detail to the

neuro exactly what it looks like. For example tell them about the

sound, then which way the head turns, do the eyes roll?, what part

of the body starts shaking first, arms or legs, does one side shake

and the other just stiffen up. This informatin will help them to

pin point where the seizures are coming from which will also help

determine a drug to use if necessary. There are different seizure

drugs for different types of seizures. I hope this helps and sorry

if it is a repeat of what you have already learned. I have been

gone since the 1st of July and have had access to the internet only

1 other day.

Geri-Anne and Wyatt, Complex I-

-- In Mito , " Darla Klein "

wrote:

> Zipporrah has had muscle tremors that even Dr. Whiteman has

> commented on since her first stroke as well as myoclonic jerks in

her

> sleep, still unsure if seizure type or not, but last nights was

much

> different. I heard her make some sort of sound and then she

started

> skaking violently and rhythmically. Her breathing was heavy and

> quick as well. It fit the description of a grand mal except the

> night was off so I don't know if she lost consciousness or not and

> since she was still breathing I didn't turn on the light to see

how

> she was with awareness, although I am not sure I would notice

> anything with that since she was alseep when it happened. Kind of

in

> the twighlight time frame of going to sleep. It was short

thankfully

> but still really threw me off. It was such an intense shaking,

not

> like a shiver or tremors, but violent shaking. I assume it is

> probably a seizure but just don't like it to be so.

>

> Darla

>

> > Hi,

> >

> > I'm not much help in this area - only that Asher, for about a

year

> between

> > one and two, would get these whole body " shivers " - they only

> lasted about 10

> > seconds. I don't know how else to describe it - our Haitian

> babysitter said at

> > the time that it was like he'd seen a ghost and it gave her the

> creeps. I think

> > of them as tremors, but it's possible they were seizures. Asher

> would space

> > out at that time as well. I remember that we were in the

diagnostic

> process and

> > the geneticist we were using at the time (who I would not

recommend

> now)

> > became worried about these and decided to do more genetic

testing.

> They never

> > found out anything and they stopped on their own. Now, with

> Shoffner's diagnosis

> > of mito, I do suspect it was related to the mito but don't know

how.

> >

> > Hope you get it figured out!

> >

> > Anne R - mom to Asher (3 1/2 - Complex III defect and possible

> complex I

> > defect)

July 19, 2004

Wow! That was good information for me. I will definitely be

watching more carefully, if it isn't too dark like last time, in the

future. That was the frustrating aspect of this time. It was so

dark I couldn't see her face. The cry was very different but I can't

explain it and it was very brief. I was just so startled by the

intensity of the rhythmical shaking to really be too observative, but

if it had been light in the room I would probably be more

informative. I do know that her breathing was quick and noisy, her

whole body seemed to be shaking although she was on her side facing

me and I had my arms mostly on her right side. But from what I

remember the left seemed to be involved as well. I know for a fact I

could not have sropped the movement as my arm was on her leg and side

and was holding on tight from the shock. I have been really

observing her in her sleep since then but haven't seen any further

intense movements, just the myoclonic jerking that has been getting

worse lately. Another thing that has been bothering me is that she

has been having very restless sleep of late and waking tons of

times. I am so anxious to speak to her neuorologist and geneticist

next week. Maybe I should call them to put my mind to ease some.

The hesitation I have though is that they may suggest coming out

sooner and I really don't feel it is necessary at this point. but,

THANKS TONS for the help.

Darla: mommy to Asenath, Zipporrah, Luke, and the other 6 kiddos

> > > Hi,

> > >

> > > I'm not much help in this area - only that Asher, for about a

> year

> > between

> > > one and two, would get these whole body " shivers " - they only

> > lasted about 10

> > > seconds. I don't know how else to describe it - our Haitian

> > babysitter said at

> > > the time that it was like he'd seen a ghost and it gave her the

> > creeps. I think

> > > of them as tremors, but it's possible they were seizures. Asher

> > would space

> > > out at that time as well. I remember that we were in the

> diagnostic

> > process and

> > > the geneticist we were using at the time (who I would not

> recommend

> > now)

> > > became worried about these and decided to do more genetic

> testing.

> > They never

> > > found out anything and they stopped on their own. Now, with

> > Shoffner's diagnosis

> > > of mito, I do suspect it was related to the mito but don't know

> how.

> > >

> > > Hope you get it figured out!

> > >

> > > Anne R - mom to Asher (3 1/2 - Complex III defect and possible

> > complex I

> > > defect)

July 19, 2004

Darla,

As usual Geri-Anne gave you some great advice. Pay attention to the details of the event should it happen again. I just wanted to add that with Lily we never had a "seizure monitor" as my own internal Mommy Monitor would awaken me to a change in her breathing- it was just different. As if I would hear a "catch" in her throat. You also mentioned her very restless sleep-waking tons of times, has she had a sleep study? If not, that might be something to consider - careful where you have it done though, as the wrong place can spell stress on the child and the parent for little to no information.