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Thanks for your note. THis is very similar to what we see in Asenath and

what we saw in Zipporrah. I have seen many of the short staring times with

Zipporrah but this was the first suspected cluster. The " eye look " issue

you spoke of was one of the things I noticed too. I was speaking to the

therapists and asked them if they noticed her eyes looked darker and not

quite the same. I wonder if the pupils were enlarged? I guess I didn't

think to look closer. We saw the same thing with Asenath as well. We also

dealt with the total fogginess during one of Asenath's clusters and that is

when the docs put her on Topamax without even doing an EEG because the

therapists saw them too and her symptoms fit so the docs decided to start

her on them immediately. We do see breakthrough seizures occasionally, but

most of them are stopped. We have caught the abnormal background issues on

EEG with Asenath so seizure activity was confirmed enough to continue

Topamax for the Mayo docs. I hate doing the EEG's and hope we won't need to

any time soon for Zipporrah but it is just another frustrating common trait

between the two girls. They are sooo much alike in their presentations!

The only real difference is what part of their bodies that get hit the

hardest in a SLE. Most everything else is identical. It definitely helps

me to hear others speak of the more specific things they see in petite mals

as they are so hard to figure out! Thanks a bunch. :)

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)

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.

> >

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> [Original Message]

>

> To: <Mito >

> Date: 2/26/2005 12:38:14 PM

> Subject: Re: Lois

>

>

> Thanks for your note. THis is very similar to what we see in Asenath and

> what we saw in Zipporrah. I have seen many of the short staring times

with

> Zipporrah but this was the first suspected cluster. The " eye look " issue

> you spoke of was one of the things I noticed too. I was speaking to the

> therapists and asked them if they noticed her eyes looked darker and not

> quite the same. I wonder if the pupils were enlarged? I guess I didn't

> think to look closer. We saw the same thing with Asenath as well. We

also

> dealt with the total fogginess during one of Asenath's clusters and that

is

> when the docs put her on Topamax without even doing an EEG because the

> therapists saw them too and her symptoms fit so the docs decided to start

> her on them immediately. We do see breakthrough seizures occasionally,

but

> most of them are stopped. We have caught the abnormal background issues

on

> EEG with Asenath so seizure activity was confirmed enough to continue

> Topamax for the Mayo docs. I hate doing the EEG's and hope we won't need

to

> any time soon for Zipporrah but it is just another frustrating common

trait

> between the two girls. They are sooo much alike in their presentations!

> The only real difference is what part of their bodies that get hit the

> hardest in a SLE. Most everything else is identical. It definitely

helps

> me to hear others speak of the more specific things they see in petite

mals

> as they are so hard to figure out! Thanks a bunch. :)

>

> 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)

>

>

> 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.

> > >

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I hope you do not have to do the EEG either, sometimes good info, torture

for

kids as young as Zipporrah. I think Leighann's had about 8 EEGs so far,

only

the last 2 being abnormal, its so hard on them. I feel like a bad mom when

I have

to do that. I wish there was a trick to make them easier, but I haven't

found it.

As young as she is just make sure that as young as she is whoever does it

has a

lot of experience doing kids. Our first EEG was the worst, the tech that

did it

had never done one on an infant. She had to measure and mark every spot

before starting,

it took her an hour to set her up, she ended up being sedated, and it wore

off

by the time she was set up. That was the only time she was sedated, the

other

techs knew what they were doing. Its hard enough on the kids anyway.

By the way, her neuro at the time said that it was odd that Leighann's

pupils enlarged,

he said they usually get smaller with a seizure, but shes never followed

the rules for anything.

Maybe its a mito thing? Maybe just a Leighann thing! Who knows.

Good luck with you and your family,

Lois

> [Original Message]

>

> To: <Mito >

> Date: 2/26/2005 12:38:14 PM

> Subject: Re: Lois

>

>

> Thanks for your note. THis is very similar to what we see in Asenath and

> what we saw in Zipporrah. I have seen many of the short staring times

with

> Zipporrah but this was the first suspected cluster. The " eye look " issue

> you spoke of was one of the things I noticed too. I was speaking to the

> therapists and asked them if they noticed her eyes looked darker and not

> quite the same. I wonder if the pupils were enlarged? I guess I didn't

> think to look closer. We saw the same thing with Asenath as well. We

also

> dealt with the total fogginess during one of Asenath's clusters and that

is

> when the docs put her on Topamax without even doing an EEG because the

> therapists saw them too and her symptoms fit so the docs decided to start

> her on them immediately. We do see breakthrough seizures occasionally,

but

> most of them are stopped. We have caught the abnormal background issues

on

> EEG with Asenath so seizure activity was confirmed enough to continue

> Topamax for the Mayo docs. I hate doing the EEG's and hope we won't need

to

> any time soon for Zipporrah but it is just another frustrating common

trait

> between the two girls. They are sooo much alike in their presentations!

> The only real difference is what part of their bodies that get hit the

> hardest in a SLE. Most everything else is identical. It definitely

helps

> me to hear others speak of the more specific things they see in petite

mals

> as they are so hard to figure out! Thanks a bunch. :)

>

> 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)

>

>

> 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.

> > >

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  • 2 weeks later...
Guest guest

Yeh! I am glad to hear she is doing well again. Kids can really

puzzle a person. The can get sick quickly and sometimes can also recover

very quickly, but when a Mito kid gets better suddenly all we can do is feel

blessed as it often is not the case. :)

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

a photo look into what Mito looks like

Darla: mommy to

Asenath (5) Probable Mito, CNS Vasculitis, strokes, migraines, seizures,

G-tube, hypotonicity, disautonomia, SID, global delays, asthma, cyclic

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

behaviors, gastric emptying issues...

Zipporrah (16 months) Probable 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,

disautonomia, hypertonicity, migraines, possible seizures, dumping syndrome,

iron deficiency, ...

Luke (16), Leah (14), Rachael (13), Isaac (11), Tirzah (8), Kezia (4), &

Marquis (3), Joey & (15 months) (some with Mito symptoms)

Re: fresh muscle biopsies

> > > > > > > >

> > > > > > > >

> > > > > > > >

> > > > > > > > We waited more than a year to get into Cleveland clininc to

> see

> > > > > Cohen.

> > > > > > > > We

> > > > > > > > then were sent to Parikh, a fellow. It was not pretty. He

> said

> > > > > > > > he

> > > > > would

> > > > > > > do the

> > > > > > > > biopsy and then didn't. He said things like is in the

> 50th

> > > > > > > percentile for

> > > > > > > > height for a five year old. She was 6 1/2. He said he did

> > > > > > > > testing

> > > he

> > > > > did

> > > > > > > not do.

> > > > > > > > He sent paperwork to docs we had not seen in years---against

> my

> > > > > express

> > > > > > > > wishes. He never opened the films of MRIs and CTs even

> though

> > > > > > > > he

> > > > > asked

> > > > > > > > for them.

> > > > > > > >

> > > > > > > > Atlanta is close to you. Schoffner is at Children's Health

> Care

> > > > > > > > of

> > > > > > > Atlanta. They

> > > > > > > > don't take medicaid. They also require written preapproval

> > > > > > > > by

> > > > > insurance

> > > > > > > and

> > > > > > > > copays paid in advance. It would probably be quicker to get

> > > > > > > > a

> > > biopsy

> > > > > in

> > > > > > > > Atlanta. It takes about four months to get the report back.

> > > > > > > >

> > > > > > > > If you try Cleveland Clinic, you might be better off finding

> > > > > > > > a

> > > great

> > > > > > > > mito

> > > > > > > doc who

> > > > > > > > will ask Cohen to order specific testing done (ex.

> > > > > > > > Whiteman

> > > at

> > > > > > > Mayo).

> > > > > > > >

> > > > > > > >

> > > > > > > >

> > > > > > > >

> > > > > > > >

> > > > > > > >

> > > > > > > >

> > > > > > > >

> > > > > > > >

> > > > > > > >

> > > > > > > > Please contact mito-owner with any problems

> > > > > > > > or

> > > > > > > > questions.

> > > > > > > >

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  • 2 weeks later...
Guest guest

Thanks so much for the information!!!!! No, you didn't scare me. I know it's a nightmare to many parents dealing with children with seizures. I've heard one too many horror stories. We are seeing our neuro next week so I am going to bring it up with him. and Lindsey are actually 3 so maybe what you have for Leighann could work. I will let you know what I find out and if I need help with anything else.

Thanks again for your input. That's what I love about this group. It's so nice to have input from others that are sharing the same experience. I don't know what I would do without this group!

Kim - Mom to and Lindsey (3) Partial Complex I

zonisamide (spelling) or zonnegram> > > > Anyone one on either of these seizure meds and if so what has been> your experience? We are on lamictal and keppra right now with no> success. We may add zonisamide tomorrow. I do know that it can cause> acidiosis but we are left with very little to try. Any suggestions,> comments would be greatly appreciated.> > Thanks> > Geri-Anne and Wyatt, complex I> caringbridge.org/mn/wyattc> > > > > > Please contact mito-owner with any problems orquestions. > > >

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