Re: Visual spots plus other stuff

March 5, 2007

Hi Gaylen -

No one is expressing any concern for these symptoms.

I took him to a neurologist (not for the first time

either) in October months after the onset of the

behavioral regression, changes in speech, loss of eye

contact, and they just asked him a few questions and

said he was fine. They looked at me like I was nuts

(not that I'm not, but hey) and have absolutely no

concern. It's making me very angry.

New symptom - tingling in his fingers. I'm thinking

low B12 as a possibility. I wonder if visual spots

and B12 deficiency could be related (not that his B12

has been checked) - from chronic viral infection of

course - this is an HHV6 child who didn't manifest

titers other than an initial weak positives of 1:10

then negative IgG from thereon. The immunologist did

not feel this was significant. (Ooooh more anger).

Nevermind that my oldest son had a dramatic

improvement once his IgG to HHV6 jumped up to 1:360

(generally accepted as the range for an active

infection).

His breathing is very unregulated. He gasps and sighs

constantly, and it's very wierd. Of course it goes

away when he's at the doctor and other times. I'm

going to have to video it for her. He also clears his

throat a lot now, but there doesn't appear to be sinus

drainage. I think he's developing a tic or his throat

just feels uncomfortable. Would temporal lobe

seizures also affect breathing?

Why in the world, in a child w/fatigue for months,

plus regression, would they not check iron, thyroid,

B12, etc???

I may have to look for a pediatric neurologist not

associated w/Children's Hospital if I can find one.

Thanks for the response, and I'll read about temporal

lobe seizures. But getting testing for it? That's a

bit tough right now.

--- Googahly@... wrote:

> I'd take him to a neurologist to rule out temporal

> lobe seizures.

> Gaylen

>

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March 5, 2007

I would insist on a full thyroid panel to include a FreeT3, FreeT4 and TSH from

the same blood draw. I had all of the symptoms you are describing prior to my

diagnosis of Hypothyroidism and for the record my TSH was on the high end of

normal, my FreeT4 was more than double the normal amount but my FreeT3 was

almost non-existent and since most doctor's do not even check this it is often

missed. BTW FreeT3 if the usable form of thyroid after our body converts it so

even if you have normal TSH and normal FreeT4 if your body does not convert it

you have hypothyroidism. Sheri

<thecolemans4@...> wrote: Hi Gaylen -

No one is expressing any concern for these symptoms.

I took him to a neurologist (not for the first time

either) in October months after the onset of the

behavioral regression, changes in speech, loss of eye

contact, and they just asked him a few questions and

said he was fine. They looked at me like I was nuts

(not that I'm not, but hey) and have absolutely no

concern. It's making me very angry.

New symptom - tingling in his fingers. I'm thinking

low B12 as a possibility. I wonder if visual spots

and B12 deficiency could be related (not that his B12

has been checked) - from chronic viral infection of

course - this is an HHV6 child who didn't manifest

titers other than an initial weak positives of 1:10

then negative IgG from thereon. The immunologist did

not feel this was significant. (Ooooh more anger).

Nevermind that my oldest son had a dramatic

improvement once his IgG to HHV6 jumped up to 1:360

(generally accepted as the range for an active

infection).

His breathing is very unregulated. He gasps and sighs

constantly, and it's very wierd. Of course it goes

away when he's at the doctor and other times. I'm

going to have to video it for her. He also clears his

throat a lot now, but there doesn't appear to be sinus

drainage. I think he's developing a tic or his throat

just feels uncomfortable. Would temporal lobe

seizures also affect breathing?

Why in the world, in a child w/fatigue for months,

plus regression, would they not check iron, thyroid,

B12, etc???

I may have to look for a pediatric neurologist not

associated w/Children's Hospital if I can find one.

Thanks for the response, and I'll read about temporal

lobe seizures. But getting testing for it? That's a

bit tough right now.

--- Googahly@... wrote:

> I'd take him to a neurologist to rule out temporal

> lobe seizures.

> Gaylen

>

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March 5, 2007

Devil's advocate here - my friend's 2 year old recently had a HUGE tumor

removed from her brain (the size of her surgeon's fist). Symptoms had been

progressing since she was a baby, but no one did an MRI until very recently,

and they operated the next day.

Kristy

Re: Re: Visual spots plus other stuff

I would insist on a full thyroid panel to include a FreeT3, FreeT4 and TSH

from the same blood draw. I had all of the symptoms you are describing prior

to my diagnosis of Hypothyroidism and for the record my TSH was on the high

end of normal, my FreeT4 was more than double the normal amount but my

FreeT3 was almost non-existent and since most doctor's do not even check

this it is often missed. BTW FreeT3 if the usable form of thyroid after our

body converts it so even if you have normal TSH and normal FreeT4 if your

body does not convert it you have hypothyroidism. Sheri

<thecolemans4@...> wrote: Hi Gaylen -

No one is expressing any concern for these symptoms.

I took him to a neurologist (not for the first time

either) in October months after the onset of the

behavioral regression, changes in speech, loss of eye

contact, and they just asked him a few questions and

said he was fine. They looked at me like I was nuts

(not that I'm not, but hey) and have absolutely no

concern. It's making me very angry.

New symptom - tingling in his fingers. I'm thinking

low B12 as a possibility. I wonder if visual spots

and B12 deficiency could be related (not that his B12

has been checked) - from chronic viral infection of

course - this is an HHV6 child who didn't manifest

titers other than an initial weak positives of 1:10

then negative IgG from thereon. The immunologist did

not feel this was significant. (Ooooh more anger).

Nevermind that my oldest son had a dramatic

improvement once his IgG to HHV6 jumped up to 1:360

(generally accepted as the range for an active

infection).

His breathing is very unregulated. He gasps and sighs

constantly, and it's very wierd. Of course it goes

away when he's at the doctor and other times. I'm

going to have to video it for her. He also clears his

throat a lot now, but there doesn't appear to be sinus

drainage. I think he's developing a tic or his throat

just feels uncomfortable. Would temporal lobe

seizures also affect breathing?

Why in the world, in a child w/fatigue for months,

plus regression, would they not check iron, thyroid,

B12, etc???

I may have to look for a pediatric neurologist not

associated w/Children's Hospital if I can find one.

Thanks for the response, and I'll read about temporal

lobe seizures. But getting testing for it? That's a

bit tough right now.

--- Googahly@... wrote:

> I'd take him to a neurologist to rule out temporal

> lobe seizures.

> Gaylen

>

**************************************

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> from AOL at

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March 6, 2007

In a message dated 3/5/2007 8:53:54 AM Central Standard Time,

thecolemans4@... writes:

<<New symptom - tingling in his fingers. I'm thinking

low B12 as a possibility. I wonder if visual spots

and B12 deficiency could be related>>

I have a pretty comprehensive book on vitamin defficiencies and it doesn't

list anything about visual spots and B12. That's doesn't necessarily mean they

aren't related though. I do know that too much B vitamins, especially

over-supplementation of B6, can cause the tingling fingers/perripheral

neuropathy.

<<His breathing is very unregulated. He gasps and sighs constantly, and it's

very wierd. >>

That is listed as a symptom of B12 defficiency. It also sounds much like a

friend of mine's child who has deep temporal lobe seizures. I'm going to

e-mail you her contact info off-list. It took several doctors before she could

get

appropriate testing for this.

<< He also clears his throat a lot now, >>

I had that throat clearing problem and tingling/numb hands when I had high

levels of arsenic in my body. Certainly worth looking at what's being sprayed

around your home to rule out any sort of ongoing exposure to a harmful

chemical. My throat clearing problem comes back occasionally with allergy or

high

yeast.

<<Would temporal lobe seizures also affect breathing?>>

Yes. The only obvious sign that my friend's son is seizing is an obvious

change in his breathing pattern and he's a bit less responsive.

Gaylen

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March 6, 2007

responses in the text below:

--- Googahly@... wrote:

>

> <<New symptom - tingling in his fingers. I'm

> thinking

> low B12 as a possibility. I wonder if visual spots

> and B12 deficiency could be related>>

>

> I have a pretty comprehensive book on vitamin

> defficiencies and it doesn't

> list anything about visual spots and B12. That's

> doesn't necessarily mean they

> aren't related though. I do know that too much B

> vitamins, especially

> over-supplementation of B6, can cause the tingling

> fingers/perripheral neuropathy.

****** Thank you for checking that. I had symptoms

of tingling from eating too many sunflower seeds (high

in folic acid) when my B12 was real low lol. I think

Dr G pegged that one for me if I remember. I think

you're not supposed to supplement folic acid w/low B12

to prevent that. That's one reason I suspected B12 -

plus a year of infection, I'd think it could be low.

Thank you bunches for looking that up.

> <<His breathing is very unregulated. He gasps and

> sighs constantly, and it's

> very wierd. >>

>

> That is listed as a symptom of B12 defficiency. It

> also sounds much like a

> friend of mine's child who has deep temporal lobe

> seizures. I'm going to

> e-mail you her contact info off-list. It took

> several doctors before she could get

> appropriate testing for this.

***** So they could still be related. Hmmm.

>

> << He also clears his throat a lot now, >>

>

> I had that throat clearing problem and tingling/numb

> hands when I had high

> levels of arsenic in my body. Certainly worth

> looking at what's being sprayed

> around your home to rule out any sort of ongoing

> exposure to a harmful

> chemical. My throat clearing problem comes back

> occasionally with allergy or high

> yeast.

**** Fortunately my neighborhood is relatively clean

being pretty far out and little need for that. But

your experience kept me from buying a house near a

golf-course that I was very interested in and wouldn't

have guessed that. Thanks there, too.

>

> <<Would temporal lobe seizures also affect

> breathing?>>

>

> Yes. The only obvious sign that my friend's son is

> seizing is an obvious

> change in his breathing pattern and he's a bit less

> responsive.

> Gaylen

***** The teacher has really been complaining because

he vegge's out at school, oblivious to his

environment, chatting w/kids while she's teaching

(without the kids actually responding to him), not

noticing the very loud bell when PE is over and all

the other kids go back ... he periodically gets left

behind and never even notices. This is sporadic. She

believes his behavior is completely unintentional and

does not compare to any other childrens' behavior that

talk a lot and are disruptive. She says it's

'different' with him and she truly believes he cannot

help it.

The more I read re temporal lobe seizures, the more

I'm noticing, like the gooseflesh, wierd talking, a

couple of months back he had trouble recognizing

letters that he DOES know occasionally (but usually at

other times) - acted like he'd never seen them before,

and the other day he complained that I smelled bad lol

(I most certainly DID NOT and was completely odor

free) and then cried because " mommy you made it stink

where you were " ! lol No I didn't!! Brief headaches -

on top of the head, but also at the base of the skull

(probably how he's holding his head) and at the

temporal spots. Even the way he starts climbing and

wiggling about in a real agitated way might be

related? Even his voice goes thru changes.

I will definitely email that contact. Thank you.

Does she expect me?

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March 7, 2007

Hi,

I agree, as said before, your child needs an MRI of his brain. Your ped. can

order it with a RX. or even a phone call. Make sure that they do a CINE flow

study. Oh, by the way if they offer to do a CT, say no. It won't show Chiari

or CSF flow issues.

>From: " Kristy Nardini " <krnardini@...>

>Reply-

>< >

>Subject: RE: Re: Visual spots plus other stuff

>Date: Mon, 5 Mar 2007 08:44:15 -0800

>

>Devil's advocate here - my friend's 2 year old recently had a HUGE tumor

>removed from her brain (the size of her surgeon's fist). Symptoms had been

>progressing since she was a baby, but no one did an MRI until very

>recently,

>and they operated the next day.

>

>Kristy

>

> Re: Re: Visual spots plus other stuff

>

> I would insist on a full thyroid panel to include a FreeT3, FreeT4 and

>TSH

>from the same blood draw. I had all of the symptoms you are describing

>prior

>to my diagnosis of Hypothyroidism and for the record my TSH was on the high

>end of normal, my FreeT4 was more than double the normal amount but my

>FreeT3 was almost non-existent and since most doctor's do not even check

>this it is often missed. BTW FreeT3 if the usable form of thyroid after our

>body converts it so even if you have normal TSH and normal FreeT4 if your

>body does not convert it you have hypothyroidism. Sheri

>

> <thecolemans4@...> wrote: Hi Gaylen -

> No one is expressing any concern for these symptoms.

> I took him to a neurologist (not for the first time

> either) in October months after the onset of the

> behavioral regression, changes in speech, loss of eye

> contact, and they just asked him a few questions and

> said he was fine. They looked at me like I was nuts

> (not that I'm not, but hey) and have absolutely no

> concern. It's making me very angry.

>

> New symptom - tingling in his fingers. I'm thinking

> low B12 as a possibility. I wonder if visual spots

> and B12 deficiency could be related (not that his B12

> has been checked) - from chronic viral infection of

> course - this is an HHV6 child who didn't manifest

> titers other than an initial weak positives of 1:10

> then negative IgG from thereon. The immunologist did

> not feel this was significant. (Ooooh more anger).

> Nevermind that my oldest son had a dramatic

> improvement once his IgG to HHV6 jumped up to 1:360

> (generally accepted as the range for an active

> infection).

>

> His breathing is very unregulated. He gasps and sighs

> constantly, and it's very wierd. Of course it goes

> away when he's at the doctor and other times. I'm

> going to have to video it for her. He also clears his

> throat a lot now, but there doesn't appear to be sinus

> drainage. I think he's developing a tic or his throat

> just feels uncomfortable. Would temporal lobe

> seizures also affect breathing?

>

> Why in the world, in a child w/fatigue for months,

> plus regression, would they not check iron, thyroid,

> B12, etc???

>

> I may have to look for a pediatric neurologist not

> associated w/Children's Hospital if I can find one.

>

> Thanks for the response, and I'll read about temporal

> lobe seizures. But getting testing for it? That's a

> bit tough right now.

>

> --- Googahly@... wrote:

>

> > I'd take him to a neurologist to rule out temporal

> > lobe seizures.

> > Gaylen

> >

> **************************************

> > AOL now offers free

> > email to everyone. Find out more about what's free

> > from AOL at

> > http://www.aol.com.

> >

> > [Non-text portions of this message have been

> > removed]

> >

>

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March 7, 2007

,

The breathing issue made me think of seizures as well... it has been 1.5

years since my little guy had his last seizure, and a couple of days ago I

heard him take three unusual breaths in another room and I was in there like

a flash. It turned out that he was lifting something that was heavy for him

(phew!) but I realized how sensitized I was to listening to him breathe even

now.

Caroline

March 7, 2007

Did there seem to be any rhyme or reason to them?

Could it just pop up while he's busy doing other

things and just last 3 or 4 breaths sometimes, then

other times last half an hour? And often without

missing a beat?

It's like he's out of breath, gasping for air, then

clearing his throat (though first it was a little

grunt). It sounds like he could have asthma but

there's absolutely no 'bad sounds' in his lungs. It's

more noticable at rest. Also, when I point my camera

to video him, he tends to stop or it reduces a lot. I

would even be prone to think it's a tic ... IF it

weren't also for the spots. I am certain that it is

an autonomic dysregulation, but that can still be a

seizure symptom. I was less worried before he told me

about the spots, but now....

Thanks again,

--- Caroline Glover <sfglover@...> wrote:

> ,

>

> The breathing issue made me think of seizures as

> well... it has been 1.5

> years since my little guy had his last seizure, and

> a couple of days ago I

> heard him take three unusual breaths in another room

> and I was in there like

> a flash. It turned out that he was lifting

> something that was heavy for him

> (phew!) but I realized how sensitized I was to

> listening to him breathe even

> now.

>

> Caroline

>

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March 7, 2007

,

In our case there was neither rhyme nor reason to them, but then he was

having 3-4 different types of seizures (3 types verified by 3-day EEG, one

type they couldn't quite pin down during the EEG... they thought he might be

having absence seizures as well). If it had been just one type of seizure,

maybe I would have seen some sort of pattern. The most likely time for him

to have seizures was around 4AM. His neurologist told me that was quite

common as they are in a certain phase of sleep (I think he said coming up

out of deep sleep) around that time which makes them more vulnerable to

going into a seizure.

My little guy did not breathe at all during his seizures (over a minute one

time), and therefore the sign of the end of his seizure would be a big,

slow, raspy gasp.

The fact that your little guy can control it somewhat probably makes it less

likely to be a seizure, but maybe not entirely impossible from what I have

read, especially if the breath were the sign that the seizure had ended (and

it were a mild seizure). I really don't know. Even neurologist sometimes

have a hard time pegging if something is a seizure or not.

Caroline

> From: <thecolemans4@...>

> Reply-< >

> Date: Wed, 07 Mar 2007 08:07:35 -0800 (PST)

> < >

> Subject: Re: Re: Visual spots plus other stuff

>

> Did there seem to be any rhyme or reason to them?

> Could it just pop up while he's busy doing other

> things and just last 3 or 4 breaths sometimes, then

> other times last half an hour? And often without

> missing a beat?

>

> It's like he's out of breath, gasping for air, then

> clearing his throat (though first it was a little

> grunt). It sounds like he could have asthma but

> there's absolutely no 'bad sounds' in his lungs. It's

> more noticable at rest. Also, when I point my camera

> to video him, he tends to stop or it reduces a lot. I

> would even be prone to think it's a tic ... IF it

> weren't also for the spots. I am certain that it is

> an autonomic dysregulation, but that can still be a

> seizure symptom. I was less worried before he told me

> about the spots, but now....

>

> Thanks again,

>

March 7, 2007

Hi Caroline -

Did antivirals improve your son's seizures? That's so

scary. I'm sure my anxiety can't compare to yours.

Did prescribe meds for the seizures?

The more I watch him, the more it seems like a tic.

It happens more when he's at rest, and when he gets

interested in something I don't notice it. It doesn't

happen when he's talking but will in between. There's

a little 'sigh' w/every exhale unless he clears his

throat (more why I think tic). Sometimes he breathes

several breaths in between. He holds his head or

gathers up his shirt.

One thing I read about was the hyperpiloris (sp?)...

He has had times where the docs called it " some kind

of rash or dry skin " really vaguely (they'd notice it

when examining him), but it looked like a permanent

case of the goosebumps to me. Hmmm. But not all over

the body.

But on the other hand he's complaining of headaches

and seeing colorful spots at all times and sometimes

they move very fast, complained (only once) of his

brain locking up and 'The s weren't there'

after running the track.

It's just so hard to say. At least they'll check him

out Monday, however far they decide to go.

Should I email you video?

Thanks for chatting with me about it.

--- Caroline Glover <sfglover@...> wrote:

> ,

>

> In our case there was neither rhyme nor reason to

> them, but then he was

> having 3-4 different types of seizures (3 types

> verified by 3-day EEG, one

> type they couldn't quite pin down during the EEG...

> they thought he might be

> having absence seizures as well). If it had been

> just one type of seizure,

> maybe I would have seen some sort of pattern. The

> most likely time for him

> to have seizures was around 4AM. His neurologist

> told me that was quite

> common as they are in a certain phase of sleep (I

> think he said coming up

> out of deep sleep) around that time which makes them

> more vulnerable to

> going into a seizure.

>

> My little guy did not breathe at all during his

> seizures (over a minute one

> time), and therefore the sign of the end of his

> seizure would be a big,

> slow, raspy gasp.

>

> The fact that your little guy can control it

> somewhat probably makes it less

> likely to be a seizure, but maybe not entirely

> impossible from what I have

> read, especially if the breath were the sign that

> the seizure had ended (and

> it were a mild seizure). I really don't know. Even

> neurologist sometimes

> have a hard time pegging if something is a seizure

> or not.

>

> Caroline

>

> > From: <thecolemans4@...>

> > Reply-< >

> > Date: Wed, 07 Mar 2007 08:07:35 -0800 (PST)

> > < >

> > Subject: Re: Re: Visual spots plus other

> stuff

> >

> > Did there seem to be any rhyme or reason to them?

> > Could it just pop up while he's busy doing other

> > things and just last 3 or 4 breaths sometimes,

> then

> > other times last half an hour? And often without

> > missing a beat?

> >

> > It's like he's out of breath, gasping for air,

> then

> > clearing his throat (though first it was a little

> > grunt). It sounds like he could have asthma but

> > there's absolutely no 'bad sounds' in his lungs.

> It's

> > more noticable at rest. Also, when I point my

> camera

> > to video him, he tends to stop or it reduces a

> lot. I

> > would even be prone to think it's a tic ... IF it

> > weren't also for the spots. I am certain that it

> is

> > an autonomic dysregulation, but that can still be

> a

> > seizure symptom. I was less worried before he

> told me

> > about the spots, but now....

> >

> > Thanks again,

> >

>

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March 8, 2007

About the hyperpiloris (sp?)...

My son had this the worst when we 1st saw Dr G 4 years ago. It was

on backs of arms and cheeks. Local docs all were real vague too. He

said he thought it could be viral related. At some point in time on

the protocol it disappeared.

It came back again in September, just on lower cheeks. Looking back

over my notes, my son has been " sicker " that whole time. We recently

upped the antiviral and back on an antibiotic. In general, i don't

really know what causes the bumps, but overall immune activation

seems to correlate.

Just my expereinces with it.

Frustarting not to know the root cause!

>

> > ,

> >

> > In our case there was neither rhyme nor reason to

> > them, but then he was

> > having 3-4 different types of seizures (3 types

> > verified by 3-day EEG, one

> > type they couldn't quite pin down during the EEG...

> > they thought he might be

> > having absence seizures as well). If it had been

> > just one type of seizure,

> > maybe I would have seen some sort of pattern. The

> > most likely time for him

> > to have seizures was around 4AM. His neurologist

> > told me that was quite

> > common as they are in a certain phase of sleep (I

> > think he said coming up

> > out of deep sleep) around that time which makes them

> > more vulnerable to

> > going into a seizure.

> >

> > My little guy did not breathe at all during his

> > seizures (over a minute one

> > time), and therefore the sign of the end of his

> > seizure would be a big,

> > slow, raspy gasp.

> >

> > The fact that your little guy can control it

> > somewhat probably makes it less

> > likely to be a seizure, but maybe not entirely

> > impossible from what I have

> > read, especially if the breath were the sign that

> > the seizure had ended (and

> > it were a mild seizure). I really don't know. Even

> > neurologist sometimes

> > have a hard time pegging if something is a seizure

> > or not.

> >

> > Caroline

> >

> > > From: <thecolemans4@...>

> > > Reply-< >

> > > Date: Wed, 07 Mar 2007 08:07:35 -0800 (PST)

> > > < >

> > > Subject: Re: Re: Visual spots plus other

> > stuff

> > >

> > > Did there seem to be any rhyme or reason to them?

> > > Could it just pop up while he's busy doing other

> > > things and just last 3 or 4 breaths sometimes,

> > then

> > > other times last half an hour? And often without

> > > missing a beat?

> > >

> > > It's like he's out of breath, gasping for air,

> > then

> > > clearing his throat (though first it was a little

> > > grunt). It sounds like he could have asthma but

> > > there's absolutely no 'bad sounds' in his lungs.

> > It's

> > > more noticable at rest. Also, when I point my

> > camera

> > > to video him, he tends to stop or it reduces a

> > lot. I

> > > would even be prone to think it's a tic ... IF it

> > > weren't also for the spots. I am certain that it

> > is

> > > an autonomic dysregulation, but that can still be

> > a

> > > seizure symptom. I was less worried before he

> > told me

> > > about the spots, but now....

> > >

> > > Thanks again,

> > >

> >

>

______________________________________________________________________

______________

> Need Mail bonding?

> Go to the Q & A for great tips from Answers users.

> http://answers./dir/?link=list & sid=396546091

>

March 8, 2007

Hi !

> Hi Caroline -

>

> Did antivirals improve your son's seizures?

Actually we thought that maybe the Valtrex made them worse so Dr. G advised

us to switch us to Famvir and we've been on that ever since. On the other

hand though, when we started antivirals within a week his language made

LEAPS (at that point he was beginning to recover from losing all speech).

It was amazing...

> That's so scary. I'm sure my anxiety can't compare to yours.

We all have anxiety in this group... the worst for me was finding him

unconscious and later realizing there was a possibility we might lose him

(the seizures were so severe they affected his heart rate that first

night... he stabilized as they were planning to send him off in a helicopter

to the big children's hospital because the nurses here were afraid to have

him in their care). But you know, long term stress over worrying about the

future of our kids and the daily stress of dealing with " behaviors " etc. is

just as bad. I keep telling my husband that when Dr. G prescribes the SSRIs

for the kids he should write a script for the parents as well.

> Did prescribe meds for the seizures?

Yes, we tried numerous anticonvulsants... we ended up on Lamictal and it is

controlling the seizures very well. I think it took about 1.5 years to get

the seizures stopped. I was terrified of Lamictal at first because of a

life-threatening necrotizing skin rash it can trigger, but we got down to

choosing either Lamictal or the ketogenic diet so decided to try it and

titrate it at half the regular rate to lessen the likelihood of a reaction.

It went fine. Spectacularly well, in fact.

>

> The more I watch him, the more it seems like a tic.

> It happens more when he's at rest, and when he gets

> interested in something I don't notice it. It doesn't

> happen when he's talking but will in between. There's

> a little 'sigh' w/every exhale unless he clears his

> throat (more why I think tic). Sometimes he breathes

> several breaths in between. He holds his head or

> gathers up his shirt.

That is so peculiar... I wonder what in the world is going on? Maybe they

would run a strep titer? It does sound more like a tic but seizures can be

really tricky. For example, some (not all) people with terrible epilepsy

can do sports and will not have a seizure whilst doing them because somehow

the activity blocks the seizure. Really wild.

>

> One thing I read about was the hyperpiloris (sp?)...

> He has had times where the docs called it " some kind

> of rash or dry skin " really vaguely (they'd notice it

> when examining him), but it looked like a permanent

> case of the goosebumps to me. Hmmm. But not all over

> the body.

Do you mean Keratosis Pilaris?

>

> But on the other hand he's complaining of headaches

> and seeing colorful spots at all times and sometimes

> they move very fast, complained (only once) of his

> brain locking up and 'The s weren't there'

> after running the track.

>

> It's just so hard to say. At least they'll check him

> out Monday, however far they decide to go.

>

> Should I email you video?

I would have you do it if I thought I could help, but I probably couldn't

tell anyway, but DO take it with you to the appointment. A picture is worth

a thousand words. My little guy's seizures were mostly so classic that

there was no doubt (except for the possible absence seizures that even a

3-day EEG with video... while they were possibly occurring... had the

neurologists scratching their heads... and THEY were the ones telling ME

they thought maybe he was having them). They just weren't sure.

>

> Thanks for chatting with me about it.

I'm glad to pass along what I know. Two things you might want to check out

are the website epilepsy.com (excellent) and book " Seizures and Epilepsy in

Childhood: A Guide " (a s Hopkins Press Health Book). You can get it on

Amazon or maybe from the local library. It was recommended by several

neurologists as the best resource for parents. I nearly wore that book out.

One thing to keep in mind is that meds are coming out so fast the a book is

unlikely to have them all... but epilepsy.com keeps up really well.

Good luck on Monday!

Caroline

March 9, 2007

Rhoda that is very interesting becasue when these " re=-apperaed " last

fall I wondered if it was antifungal related and we switched

antifungals but it did not change. But I have wondered if it is not

more related to the antifungal not hitting it. My son also came up

with sinus symptoms the same time, which I wondered was fungal, not

allery, not bacterial. My allergist is familiar with treating fungal

sinus infections. I think I will ask him about it.

> >

> > > ,

> > >

> > > In our case there was neither rhyme nor reason to

> > > them, but then he was

> > > having 3-4 different types of seizures (3 types

> > > verified by 3-day EEG, one

> > > type they couldn't quite pin down during the EEG...

> > > they thought he might be

> > > having absence seizures as well). If it had been

> > > just one type of seizure,

> > > maybe I would have seen some sort of pattern. The

> > > most likely time for him

> > > to have seizures was around 4AM. His neurologist

> > > told me that was quite

> > > common as they are in a certain phase of sleep (I

> > > think he said coming up

> > > out of deep sleep) around that time which makes them

> > > more vulnerable to

> > > going into a seizure.

> > >

> > > My little guy did not breathe at all during his

> > > seizures (over a minute one

> > > time), and therefore the sign of the end of his

> > > seizure would be a big,

> > > slow, raspy gasp.

> > >

> > > The fact that your little guy can control it

> > > somewhat probably makes it less

> > > likely to be a seizure, but maybe not entirely

> > > impossible from what I have

> > > read, especially if the breath were the sign that

> > > the seizure had ended (and

> > > it were a mild seizure). I really don't know. Even

> > > neurologist sometimes

> > > have a hard time pegging if something is a seizure

> > > or not.

> > >

> > > Caroline

> > >

> > > > From: <thecolemans4@>

> > > > Reply-< >

> > > > Date: Wed, 07 Mar 2007 08:07:35 -0800 (PST)

> > > > < >

> > > > Subject: Re: Re: Visual spots plus other

> > > stuff

> > > >

> > > > Did there seem to be any rhyme or reason to them?

> > > > Could it just pop up while he's busy doing other

> > > > things and just last 3 or 4 breaths sometimes,

> > > then

> > > > other times last half an hour? And often without

> > > > missing a beat?

> > > >

> > > > It's like he's out of breath, gasping for air,

> > > then

> > > > clearing his throat (though first it was a little

> > > > grunt). It sounds like he could have asthma but

> > > > there's absolutely no 'bad sounds' in his lungs.

> > > It's

> > > > more noticable at rest. Also, when I point my

> > > camera

> > > > to video him, he tends to stop or it reduces a

> > > lot. I

> > > > would even be prone to think it's a tic ... IF it

> > > > weren't also for the spots. I am certain that it

> > > is

> > > > an autonomic dysregulation, but that can still be

> > > a

> > > > seizure symptom. I was less worried before he

> > > told me

> > > > about the spots, but now....

> > > >

> > > > Thanks again,

> > > >

> > >

> >

> __________________________________________________________

> ______________

> > Need Mail bonding?

> > Go to the Q & A for great tips from Answers

users.

> > http://answers./dir/?link=list & sid=396546091

> >

>

March 13, 2007

Hi -

The MRI is scheduled for Thursday. Unfortunately he

did not order CINE flow - don't know what that is but

I assume it tracks CSF flow?

I had a memory triggered from a 'lip vs head' accident

yesterday, and how I could forget this I do not know

(other than being so focused over the long-term

stuff)... Sometime in January, my DS7 head-butted my

DS5 right in the back of the head, and if I remember,

it was at the base of the skull. He did this thinking

he was being funny (we have a problem w/him

headbutting us in the gut), but the whack was sooo

loud and it really really hurt my little one and gave

him an instant headache. He was already ill at the

time, too, so he laid down for an hour (not uncommon

at that time at all) and later appeared over it.

There were no other symptoms like vomiting etc. I had

to put it out of my mind because I was so furious with

his brother, and obviously I succeeded because I am

only now making a connection between the spots and

increased headaches. It was at least 3 weeks before

he started having the spots if not longer, but I

wonder if he was injured worse than we knew. I left

msg w/the nurse to tell the neurologist (we saw him

Monday). Now, the spots were the only new symptom,

maybe also an increase in headaches... all the other

stuff has been going on since at least May, and the

breathing thing since at least fall. So I hope there

is not an actual injury but am very much holding my

breath until we find out what it shows on Thursday.

I hope this cooperative brave little fellow handles

the MRI w/out sedation okay...

I will let you guys know. In the meantime I'll work at

keeping the moments of panic and terror at bay lol.

And , I can bet I know what you might be

thinking.

Later-

--- LINDA A <lsa5885@...> wrote:

> Hi,

>

> I agree, as said before, your child needs an MRI of

> his brain. Your ped. can

> order it with a RX. or even a phone call. Make sure

> that they do a CINE flow

> study. Oh, by the way if they offer to do a CT, say

> no. It won't show Chiari

> or CSF flow issues.

>

________________________________________________________________________________\

____

No need to miss a message. Get email on-the-go

with for Mobile. Get started.

http://mobile./mail

March 14, 2007

Hi ,

No need to worry about the CINE flow not being ordered at first. Just call

your DR.'s office and ask them to add it to the orginal RX. it's that easy.

My son's MRI's are added to all the time. The neurosurgeon has

afterthoughts and calls to add things fairly often.

O.K., why no sedation? Is you're son able to stay perfectly still for about

an hour? It's unheard of in our Children's Hospital. All young children get

sedation during an MRI. If they move even once the test is a loss. We've had

CT's without sedation but they take 2 minutes and that's hard enough to get

through.

I would question this before you even begin because it's all for nothing if

he moves( by the way they will still charge you for the complete scan even

if it's a wash).

Let me know what happens,

>From: <thecolemans4@...>

>Reply-

>

>Subject: RE: Re: Visual spots plus other stuff

>Date: Tue, 13 Mar 2007 19:26:57 -0700 (PDT)

>

>Hi -

>

>The MRI is scheduled for Thursday. Unfortunately he

>did not order CINE flow - don't know what that is but

>I assume it tracks CSF flow?

>

>I had a memory triggered from a 'lip vs head' accident

>yesterday, and how I could forget this I do not know

>(other than being so focused over the long-term

>stuff)... Sometime in January, my DS7 head-butted my

>DS5 right in the back of the head, and if I remember,

>it was at the base of the skull. He did this thinking

>he was being funny (we have a problem w/him

>headbutting us in the gut), but the whack was sooo

>loud and it really really hurt my little one and gave

>him an instant headache. He was already ill at the

>time, too, so he laid down for an hour (not uncommon

>at that time at all) and later appeared over it.

>There were no other symptoms like vomiting etc. I had

>to put it out of my mind because I was so furious with

>his brother, and obviously I succeeded because I am

>only now making a connection between the spots and

>increased headaches. It was at least 3 weeks before

>he started having the spots if not longer, but I

>wonder if he was injured worse than we knew. I left

>msg w/the nurse to tell the neurologist (we saw him

>Monday). Now, the spots were the only new symptom,

>maybe also an increase in headaches... all the other

>stuff has been going on since at least May, and the

>breathing thing since at least fall. So I hope there

>is not an actual injury but am very much holding my

>breath until we find out what it shows on Thursday.

>

>I hope this cooperative brave little fellow handles

>the MRI w/out sedation okay...

>

>I will let you guys know. In the meantime I'll work at

>keeping the moments of panic and terror at bay lol.

>And , I can bet I know what you might be

>thinking.

>

>Later-

>

>--- LINDA A <lsa5885@...> wrote:

>

> > Hi,

> >

> > I agree, as said before, your child needs an MRI of

> > his brain. Your ped. can

> > order it with a RX. or even a phone call. Make sure

> > that they do a CINE flow

> > study. Oh, by the way if they offer to do a CT, say

> > no. It won't show Chiari

> > or CSF flow issues.

> >

>

>_______________________________________________________________________________\

_____

>No need to miss a message. Get email on-the-go

>with for Mobile. Get started.

>http://mobile./mail

March 14, 2007

: I am curious what a CINE flow is, what it measures, as well as

what add-ons to MRIs have proved useful for your son and his

neurosurgeon? Thanks for any insight.

RE: Re: Visual spots plus other stuff

>Date: Tue, 13 Mar 2007 19:26:57 -0700 (PDT)

>

>Hi -

>

>The MRI is scheduled for Thursday. Unfortunately he

>did not order CINE flow - don't know what that is but

>I assume it tracks CSF flow?

>

>I had a memory triggered from a 'lip vs head' accident

>yesterday, and how I could forget this I do not know

>(other than being so focused over the long-term

>stuff)... Sometime in January, my DS7 head-butted my

>DS5 right in the back of the head, and if I remember,

>it was at the base of the skull. He did this thinking

>he was being funny (we have a problem w/him

>headbutting us in the gut), but the whack was sooo

>loud and it really really hurt my little one and gave

>him an instant headache. He was already ill at the

>time, too, so he laid down for an hour (not uncommon

>at that time at all) and later appeared over it.

>There were no other symptoms like vomiting etc. I had

>to put it out of my mind because I was so furious with

>his brother, and obviously I succeeded because I am

>only now making a connection between the spots and

>increased headaches. It was at least 3 weeks before

>he started having the spots if not longer, but I

>wonder if he was injured worse than we knew. I left

>msg w/the nurse to tell the neurologist (we saw him

>Monday). Now, the spots were the only new symptom,

>maybe also an increase in headaches... all the other

>stuff has been going on since at least May, and the

>breathing thing since at least fall. So I hope there

>is not an actual injury but am very much holding my

>breath until we find out what it shows on Thursday.

>

>I hope this cooperative brave little fellow handles

>the MRI w/out sedation okay...

>

>I will let you guys know. In the meantime I'll work at

>keeping the moments of panic and terror at bay lol.

>And , I can bet I know what you might be

>thinking.

>

>Later-

>

>--- LINDA A <lsa5885msn (DOT) <mailto:lsa5885%40msn.com> com> wrote:

>

> > Hi,

> >

> > I agree, as said before, your child needs an MRI of

> > his brain. Your ped. can

> > order it with a RX. or even a phone call. Make sure

> > that they do a CINE flow

> > study. Oh, by the way if they offer to do a CT, say

> > no. It won't show Chiari

> > or CSF flow issues.

> >

>

>__________________________________________________________

>No need to miss a message. Get email on-the-go

>with for Mobile. Get started.

>http://mobile. <http://mobile./mail> /mail

March 15, 2007

Hi ,

A CINE flow shows the cerebral spinal fluid as it flows around the brain.

The main problem with Chiari is that the CSF flow is often blocked by the

herniation of the cerebullar tonsils into the spinal column (however

sometimes the herniation is minimal but there is little or no CSF flow to

the brain due to a small posterior fossia). This study is very important and

always done during my son's MRI's. He also gets contrast as well as flexion

and extension views due to a basilar invagination. HTH!

Take care,

>From: " K. Fischer " <elfischer@...>

>Reply-

>< >

>Subject: RE: Re: Visual spots plus other stuff

>Date: Wed, 14 Mar 2007 18:05:47 -0500

>

>: I am curious what a CINE flow is, what it measures, as well as

>what add-ons to MRIs have proved useful for your son and his

>neurosurgeon? Thanks for any insight.

>

> RE: Re: Visual spots plus other stuff

> >Date: Tue, 13 Mar 2007 19:26:57 -0700 (PDT)

> >

> >Hi -

> >

> >The MRI is scheduled for Thursday. Unfortunately he

> >did not order CINE flow - don't know what that is but

> >I assume it tracks CSF flow?

> >

> >I had a memory triggered from a 'lip vs head' accident

> >yesterday, and how I could forget this I do not know

> >(other than being so focused over the long-term

> >stuff)... Sometime in January, my DS7 head-butted my

> >DS5 right in the back of the head, and if I remember,

> >it was at the base of the skull. He did this thinking

> >he was being funny (we have a problem w/him

> >headbutting us in the gut), but the whack was sooo

> >loud and it really really hurt my little one and gave

> >him an instant headache. He was already ill at the

> >time, too, so he laid down for an hour (not uncommon

> >at that time at all) and later appeared over it.

> >There were no other symptoms like vomiting etc. I had

> >to put it out of my mind because I was so furious with

> >his brother, and obviously I succeeded because I am

> >only now making a connection between the spots and

> >increased headaches. It was at least 3 weeks before

> >he started having the spots if not longer, but I

> >wonder if he was injured worse than we knew. I left

> >msg w/the nurse to tell the neurologist (we saw him

> >Monday). Now, the spots were the only new symptom,

> >maybe also an increase in headaches... all the other

> >stuff has been going on since at least May, and the

> >breathing thing since at least fall. So I hope there

> >is not an actual injury but am very much holding my

> >breath until we find out what it shows on Thursday.

> >

> >I hope this cooperative brave little fellow handles

> >the MRI w/out sedation okay...

> >

> >I will let you guys know. In the meantime I'll work at

> >keeping the moments of panic and terror at bay lol.

> >And , I can bet I know what you might be

> >thinking.

> >

> >Later-

> >

> >--- LINDA A <lsa5885msn (DOT) <mailto:lsa5885%40msn.com> com> wrote:

> >

> > > Hi,

> > >

> > > I agree, as said before, your child needs an MRI of

> > > his brain. Your ped. can

> > > order it with a RX. or even a phone call. Make sure

> > > that they do a CINE flow

> > > study. Oh, by the way if they offer to do a CT, say

> > > no. It won't show Chiari

> > > or CSF flow issues.

> > >

> >

> >__________________________________________________________

> >No need to miss a message. Get email on-the-go

> >with for Mobile. Get started.

> >http://mobile. <http://mobile./mail> /mail

>

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