Re: Kathy/all- Seizure issue (foster daughter)

January 27, 2005

I'm surprised that they did not keep her hospitalized for several days. That is

what they did when my stepgrandson started having absence seizures. They

kept him in the hospital on eeg to check for seizures.

January 27, 2005

Darla,

Call me when you get a chance. 's seizure sounds exactly like how

and Lindsey's seizures started. The temporary paralysis is called

" Todd's Paralysis " and the girls both experienced that too. I will be

around all day.

Kim

Kathy/all- Seizure issue (foster daughter)

>

> I was wondering if you could help me with a question. had a

> seizure last night lasting between 30-45 minutes and was taken to the

> hospital via ambulance. The seizure began on her right side as a

> rhythmical jerking and then after several minutes went into a full body

> spasming form. Also of note was that her right side was temporarily

> paralyzed. Her arm was still not moving much until this morning even. My

> question is, do febrile seizures occur like this? There is a question as

> to whether she might have a seizure disorder because of the right side

> being affected only at first, the paralysis, and the prematurity issues.

> She did have a fever but not above 100.5 degrees and only for a while.

> Her chest x-ray, CT scans, and all labs were normal, with not even any

> viral issues showing. Does this sound febrile??? Any help is

> appreciated.

> She is doing much better today. We came home and got to bed at 4 AM

> so not much sleep last night. Our pediatrician is worried about it being

> more than febrile and wants her to see a neurologist and have an EEG soon.

> I am glad we are home again though and she is feeling perkier.

>

> 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)

>

January 27, 2005

-Darla,

I'm surprised that they sent her home! I would push for the follow up

with the neuro right away. surprised that they didn't do it in the

hospital.

Prayers with you,

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

> I was wondering if you could help me with a question.

had a

> seizure last night lasting between 30-45 minutes and was taken to

the

> hospital via ambulance. The seizure began on her right side as a

rhythmical

> jerking and then after several minutes went into a full body

spasming form.

> Also of note was that her right side was temporarily paralyzed.

Her arm was

> still not moving much until this morning even. My question is, do

febrile

> seizures occur like this? There is a question as to whether she

might have

> a seizure disorder because of the right side being affected only at

first,

> the paralysis, and the prematurity issues. She did have a fever

but not

> above 100.5 degrees and only for a while. Her chest x-ray, CT

scans, and

> all labs were normal, with not even any viral issues showing. Does

this

> sound febrile??? Any help is appreciated.

> She is doing much better today. We came home and got to bed

at 4 AM so

> not much sleep last night. Our pediatrician is worried about it

being more

> than febrile and wants her to see a neurologist and have an EEG

soon. I am

> glad we are home again though and she is feeling perkier.

>

> 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)

January 27, 2005

Darla,

Not all children have to have a very high fever to have a seizure. They all have a different threshold at which point they seize. I know of one little girl that we used to see quite frequently in our ER and at the very first sign of a fever they had to start cooling her down because she would seize at 99.6. She has out grown these to my knowledge. I will pray these seizures are nothing more than febrile type. How are the other kiddos doing?

Kathy, grandma to Audrey, 3yearsDarla Klein wrote:

I was wondering if you could help me with a question. had a seizure last night lasting between 30-45 minutes and was taken to the hospital via ambulance. The seizure began on her right side as a rhythmical jerking and then after several minutes went into a full body spasming form. Also of note was that her right side was temporarily paralyzed. Her arm was still not moving much until this morning even. My question is, do febrile seizures occur like this? There is a question as to whether she might have a seizure disorder because of the right side being affected only at first, the paralysis, and the prematurity issues. She did have a fever but not above 100.5 degrees and only for a while. Her chest x-ray, CT scans, and all labs were normal, with not even any viral

issues showing. Does this sound febrile??? Any help is appreciated. She is doing much better today. We came home and got to bed at 4 AM so not much sleep last night. Our pediatrician is worried about it being more than febrile and wants her to see a neurologist and have an EEG soon. I am glad we are home again though and she is feeling perkier.See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org to see a photo look into what Mito looks likeDarla: mommy toAsenath (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.

January 28, 2005

We are still battling the pneumonia in the home, especially in Joey

('s twin), alone with all the other kids dealing with the wonders

of this virus as well. Lots of coughing and gunky heads and chests here.

But, Zipporrah seems to be on the up swing as she has been put on an

antibiotic for the bacterial ear infections along with routine neb

treatments. Most of the older kids are holding their own with the virus,

and Asenath is still struggling with a hoarse voice and asthmatic issues but

otherwise doing ok. We have had to cancel all therapies since last week and

although a nice break, I was really looking forward to speaking with Joey

and 's therapists more thoroughly this week about their issues.

They are doing very well at transitioning into the family and I know that

once they are feeling better, it will get even better.

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: Kathy/all- Seizure issue (foster daughter)

> Darla,

> Not all children have to have a very high fever to have a seizure. They

> all have a different threshold at which point they seize. I know of one

> little girl that we used to see quite frequently in our ER and at the very

> first sign of a fever they had to start cooling her down because she would

> seize at 99.6. She has out grown these to my knowledge. I will pray

> these seizures are nothing more than febrile type. How are the other

> kiddos doing?

>

> Kathy, grandma to Audrey, 3years

>

> Darla Klein wrote:

> I was wondering if you could help me with a question. had

> a

> seizure last night lasting between 30-45 minutes and was taken to the

> hospital via ambulance. The seizure began on her right side as a

> rhythmical

> jerking and then after several minutes went into a full body spasming

> form.

> Also of note was that her right side was temporarily paralyzed. Her arm

> was

> still not moving much until this morning even. My question is, do febrile

> seizures occur like this? There is a question as to whether she might

> have

> a seizure disorder because of the right side being affected only at first,

> the paralysis, and the prematurity issues. She did have a fever but not

> above 100.5 degrees and only for a while. Her chest x-ray, CT scans, and

> all labs were normal, with not even any viral issues showing. Does this

> sound febrile??? Any help is appreciated.

> She is doing much better today. We came home and got to bed at 4 AM

> so

> not much sleep last night. Our pediatrician is worried about it being

> more

> than febrile and wants her to see a neurologist and have an EEG soon. I

> am

> glad we are home again though and she is feeling perkier.

>

> 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.

>

> ---------------------------------

>

January 28, 2005