Re: seizures or sleep walking???

[Guest guest]

Darla, I have been told that if you can't break the trance by waving

your hand in front of them or snapping your fingers, etc. that they

are probably having a seizure. It is hard to tell sometimes though.

Usually a neruologist has to witness one to tell you for sure it was

a seizure.

Geri-Anne--

- In Mito , " Darla Klein " <honeybear50317@m...> wrote:

> Yesterday we a very unusual therapy session with Zipporrah.

She was

> sleeping on the way to the therapy location (about 10-15 minutes

drive) and

> when we got there I took her out of the stroller and lay her on the

floor in

> the therapy room, took her coat off, and sat her up since her eyes

were

> open, assuming of course that she was awake. Well, this is a very

normal

> occurrence, but yesterday she just was so strange. For the entire

hour

> (minus the last 5-10 minutes) she moved slowly, would stop to lean

on the

> wall or sit and was totally dazed looking. She was staring a lot

and

> wouldn't speak, smile, or respond to stimulus no matter what we

tried. The

> therapist was pretty concerned as she had never seen her like this

and it

> looked like she might be having petit mals and not coming out of

them in

> between (clustering). She did walk to pick up a couple balls,

would bend

> and drop them in a hoop, etc. but no emotional responses and most

of the

> time she would stop to just sit still looking down. Then, as if

someone

> flipped a switch, she looked up, smiled, jumped up, ran across the

room to

> the swing she was just on, started communicating, and was extra

hyper and it

> was a relief to see her back to normal (but extra hyper). We have

seen a

> few seizures with Zipporrah during her two largest stroke episodes

and have

> been wondering lately if she has petit mals as there are occasions

where she

> will be staring into space, but it is so hard to tell with them

often.

> Petit mals are the type Asenath has and we have seen the clusters

and the

> same behavior with her. I just am hoping I am wrong. But then I

also

> wonder a bit if she was actually not awake yet??? Any opinions are

> appreciated.

>

> See www.caringbridge.org/ia/mitomomof9 and

www.heartbeatsformito.org to see

> a photo look into what Mito looks like

> Darla: mommy to

> Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-

tube,

> hypotonicity, disautonomy, SID, global delays, asthma, cyclic

vomiting,

> bladder issues, wheelchair for distances, eye issues, autistic

behaviors,

> gastric emptying issues...

> Zipporrah (14 months) Mito, strokes, neuro-motor planning dys.,

SID, GERD,

> dysphasia, 100% G-tube fed, speech delays, extreme fatigue,

excessive

> phlegm, asthma, trach issues, aberrant subclavian artery,

disautonomy,

> hypertonicity, migraines, possible seizures, dumping syndrome, iron

> deficiency, ...

> Luke (16), Leah (14), Rachael (13), Isaac (10), Tirzah (8), Kezia

(4), &

> Marquis (3), Joey & (12 months) (some with Mito symptoms)

[Guest guest]

Is it possible that her blood sugar was just alittle off? Sometimes

my kids are really tired and/or disoriented when there sugars are

low especially if they have been awoken early. Then when the sugar

regulates itself they are back to normal. i don't think she would

continue to play if she was seizing but I am definately know seizure

expert. Let us know what you find out!

Dawn

[Guest guest]

We do not believe it was blood sugar issues at this point. It was very

similar to Asenath's petite mal clusters where she just was out of it until

they totally passed. My daughter said she did the same thing again later on

in the day after taking another nap, but none since then. Hopefully it

isn't seizures, but if they are I hope they will be very infrequent or " just

disappear " without treatment as I HATE seizure meds!

See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org to see

a photo look into what Mito looks like

Darla: mommy to

Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

hypotonicity, disautonomy, SID, global delays, asthma, cyclic vomiting,

bladder issues, wheelchair for distances, eye issues, autistic behaviors,

gastric emptying issues...

Zipporrah (14 months) Mito, strokes, neuro-motor planning dys., SID, GERD,

dysphasia, 100% G-tube fed, speech delays, extreme fatigue, excessive

phlegm, asthma, trach issues, aberrant subclavian artery, disautonomy,

hypertonicity, migraines, possible seizures, dumping syndrome, iron

deficiency, ...

Luke (16), Leah (14), Rachael (13), Isaac (10), Tirzah (8), Kezia (4), &

Marquis (3), Joey & (12 months) (some with Mito symptoms)

Re: seizures or sleep walking???

>

>

> Is it possible that her blood sugar was just alittle off? Sometimes

> my kids are really tired and/or disoriented when there sugars are

> low especially if they have been awoken early. Then when the sugar

> regulates itself they are back to normal. i don't think she would

> continue to play if she was seizing but I am definately know seizure

> expert. Let us know what you find out!

>

> Dawn

>

>

>

>

>

>

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

>

[Guest guest]

I don't know if this helps, but Leighann has done simular, it sounds like

she wasn't finished with

the seizures. I usually can tell when she's done by the way she acts, it's

like something snapped

on her and instantly shes back to normal. While shes in the clusters its

like shes in a heavy fog in

between. Afterward she acts like nothing even happened, and she'll take a

longer nap than usual

when she winds down, but that depends on the severity of the seizure too.

Leighann has the staring seizures also, and the only way I know for sure

that shes in one when

she gets spacy and I can't get her to respond is to look at her eyes, her

pupils get large and she gets this look on her face. Thats

the only things have been the same on her seizures ( the staring and " the

look " ). Almost everytime

she has the seizures everything else about it is different each time. It

makes it hard to know for sure

unless they're extreme. I know its not the same for everyone, but I hope

this helps. Hopefully its

something other than seizures, something simple. You guys have been so

helpful to me, I just hope

in some way this helps you. Thank you so much for all your help, and I'll

be praying for your

Zipporrah, that this is something much better.

Lois

> [Original Message]

>

> To: List Mito <Mito >

> Date: 2/23/2005 10:42:22 AM

> Subject: seizures or sleep walking???

>

>

> Yesterday we a very unusual therapy session with Zipporrah. She was

> sleeping on the way to the therapy location (about 10-15 minutes drive)

and

> when we got there I took her out of the stroller and lay her on the floor

in

> the therapy room, took her coat off, and sat her up since her eyes were

> open, assuming of course that she was awake. Well, this is a very normal

> occurrence, but yesterday she just was so strange. For the entire hour

> (minus the last 5-10 minutes) she moved slowly, would stop to lean on the

> wall or sit and was totally dazed looking. She was staring a lot and

> wouldn't speak, smile, or respond to stimulus no matter what we tried.

The

> therapist was pretty concerned as she had never seen her like this and it

> looked like she might be having petit mals and not coming out of them in

> between (clustering). She did walk to pick up a couple balls, would bend

> and drop them in a hoop, etc. but no emotional responses and most of the

> time she would stop to just sit still looking down. Then, as if someone

> flipped a switch, she looked up, smiled, jumped up, ran across the room

to

> the swing she was just on, started communicating, and was extra hyper and

it

> was a relief to see her back to normal (but extra hyper). We have seen

a

> few seizures with Zipporrah during her two largest stroke episodes and

have

> been wondering lately if she has petit mals as there are occasions where

she

> will be staring into space, but it is so hard to tell with them often.

> Petit mals are the type Asenath has and we have seen the clusters and the

> same behavior with her. I just am hoping I am wrong. But then I also

> wonder a bit if she was actually not awake yet??? Any opinions are

> appreciated.

>

> See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org to

see

> a photo look into what Mito looks like

> Darla: mommy to

> Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

> hypotonicity, disautonomy, SID, global delays, asthma, cyclic vomiting,

> bladder issues, wheelchair for distances, eye issues, autistic behaviors,

> gastric emptying issues...

> Zipporrah (14 months) Mito, strokes, neuro-motor planning dys., SID,

GERD,

> dysphasia, 100% G-tube fed, speech delays, extreme fatigue, excessive

> phlegm, asthma, trach issues, aberrant subclavian artery, disautonomy,

> hypertonicity, migraines, possible seizures, dumping syndrome, iron

> deficiency, ...

> Luke (16), Leah (14), Rachael (13), Isaac (10), Tirzah (8), Kezia (4), &

> Marquis (3), Joey & (12 months) (some with Mito symptoms)

>

>

>

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

>

[Guest guest]

Hi Darla,

I hope the children are settling in and that the virus is out of

your house, I have been watching the news here as a nasty flu virus

is cancelling schools around Dayton. I just thought I would share

Collin's history a bit regarding the sleepwalking. He started having

episodes of sleepwalking with deliberate motions and would appear

somewhat awake but his eyes would always look " wild " during them.

They increased in frequency over time and then started with daytime

symptoms such as very pale skin or very flushed face, disorientation-

he would say that he had to sometimes remember where he was or who

people were and he mixed up family members and such, but he continued

on with his activity. He had an EEG, and the tech who did it said it

sounded like a type of partial-complex seizure in which a person

looks deliberate in their actions but doesn't really know what is

going on and can't communicate during them. However, a sleep study

revealed high CO2 retention, though we didn't have to address that

issue at first. A respiratory therapist at the MDA clinic found

sometime later in this process that his CO2 was WAY too high in the

daytime, so we sought help from a pulmonologist who has treated mito

disorder. He said sometimes in mito disorder the person has trouble

with oxygen levels and the way it is processed in the mitochondria,

and though Collin had desaturations you can't always go by that

because the only way to know how much O2 is reaching the brain is by

inserting a probe deep into the brain to measure, which none of us

are going to even consider doing. Collin started using O2 and we

have noticed a big difference, especially this past month. So we're

thinking the trouble for him lies more in his O2 and CO2 levels than

seizures, though it was never completely ruled out. We still don't

completely understand the whole mito process in this area. Has

Zipporah had any trouble with O2 or CO2 levels before? Sorry this

was long, I tried to shorten it as much as possible. Many blessings

to your family, Joni

> Yesterday we a very unusual therapy session with Zipporrah.

She was

> sleeping on the way to the therapy location (about 10-15 minutes

drive) and

> when we got there I took her out of the stroller and lay her on the

floor in

> the therapy room, took her coat off, and sat her up since her eyes

were

> open, assuming of course that she was awake. Well, this is a very

normal

> occurrence, but yesterday she just was so strange. For the entire

hour

> (minus the last 5-10 minutes) she moved slowly, would stop to lean

on the

> wall or sit and was totally dazed looking. She was staring a lot

and

> wouldn't speak, smile, or respond to stimulus no matter what we

tried. The

> therapist was pretty concerned as she had never seen her like this

and it

> looked like she might be having petit mals and not coming out of

them in

> between (clustering). She did walk to pick up a couple balls,

would bend

> and drop them in a hoop, etc. but no emotional responses and most

of the

> time she would stop to just sit still looking down. Then, as if

someone

> flipped a switch, she looked up, smiled, jumped up, ran across the

room to

> the swing she was just on, started communicating, and was extra

hyper and it

> was a relief to see her back to normal (but extra hyper). We have

seen a

> few seizures with Zipporrah during her two largest stroke episodes

and have

> been wondering lately if she has petit mals as there are occasions

where she

> will be staring into space, but it is so hard to tell with them

often.

> Petit mals are the type Asenath has and we have seen the clusters

and the

> same behavior with her. I just am hoping I am wrong. But then I

also

> wonder a bit if she was actually not awake yet??? Any opinions are

> appreciated.

>

> See www.caringbridge.org/ia/mitomomof9 and

www.heartbeatsformito.org to see

> a photo look into what Mito looks like

> Darla: mommy to

> Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-

tube,

> hypotonicity, disautonomy, SID, global delays, asthma, cyclic

vomiting,

> bladder issues, wheelchair for distances, eye issues, autistic

behaviors,

> gastric emptying issues...

> Zipporrah (14 months) Mito, strokes, neuro-motor planning dys.,

SID, GERD,

> dysphasia, 100% G-tube fed, speech delays, extreme fatigue,

excessive

> phlegm, asthma, trach issues, aberrant subclavian artery,

disautonomy,

> hypertonicity, migraines, possible seizures, dumping syndrome, iron

> deficiency, ...

> Luke (16), Leah (14), Rachael (13), Isaac (10), Tirzah (8), Kezia

(4), &

> Marquis (3), Joey & (12 months) (some with Mito symptoms)