Re: Re: Visual spots plus other stuff (part 2)

[Guest guest]

In a message dated 3/6/2007 11:16:56 AM Central Standard Time,

thecolemans4@... writes:

<<What I wonder now, is, would an EEG show it?>>

The mother whose child has the deep temporal lobes said they didn't show up

on a traditional EEG that it needed specialized equipment to read it. They

went to some center in Austin, Tx to get a diagnosis. However, if your son's

neuro is proclaiming him seizure free with no EEG at all, I'd find another

doctor.

Gaylen

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[Guest guest]

In a message dated 3/6/2007 12:38:38 PM Central Standard Time,

thecolemans4@... writes:

<<I'll be curious about the specialized equipment. With

the luck we've had with enthusiastic doctors truly

concerned with putting together all these symptoms,

I'm not very optimistic. But I'd enjoy a trip to

Austin Tx. Wonder if it's within driving distance of

Dr ?>>

Sort of. I'd guess they'd be about 6-8 hours apart. I'm sure other very

high tech hospitals have this specialized equipment.

<<Funny incidentals.Funny incidentals.<WBR>.. last nigh

case of an aneurism in the temporal lobe and the woman

was hearing singing, and this morning on SpongeBob,

Sandy was going home to TX. Sometimes I just feel

like the message is.... get your butt out of

Birmingham and go to someone who really cares. >>

Doo doo doo doo. We've had stuff like that happen, too, one of which led us

to Dr. G.

Gaylen

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[Guest guest]

In a message dated 3/6/2007 12:49:15 PM Central Standard Time,

krnardini@... writes:

<<The center in Austin, TX is probably Thoughtul House. Awesome

organization.>>

No. Thoughtful House popped up around that time or shortly after. It was a

center that specialized in seizure diagnosis. I don't recall the name since

it was about six years ago and didn't apply to our situation. I just remember

all the fighting the mother had to do to get testing that could truly rule in

or out the diagnosis. Perhaps can post the name after she chats with

the other mother.

Gaylen

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[Guest guest]

Oh yeah - I forgot another one. Twice now, he has

cried in the morning because I gave him a spoon that

was " too heavy " . He got real emotional about it, said

it was too heavy for him to eat with. The first time

it was a heavier 'good' quality spoon and the

difference is measureable, the next time it was

elcheapo lightweight, and he still said it was too

heavy. He was soooo over-emotional about this it was

pathetic, so unreasonable that I could only worry what

was wrong with him.

It appears the temporal lobe stuff could even explain

why sometimes he's too tired to walk thru a parking

lot yet hours later can play, why sometimes he can't

start himself swinging or hold onto the swing and at

other times he has no trouble. Or why he can go to

the park and play happily, then suddenly come sit down

saying he's too tired after only being there 5-10

minutes. I've long begun to wonder if - since the

fever 100.0 stopped back at the end of September, if

the fatigue is real or inflammation in his brain.

What I wonder now, is, would an EEG show it? I've

been blown off hardcore by the neurologist, who stared

me down at the last visit w/an expression that was

very challenging, and whatever was going on in her

mind, it was mean. I seriously truly felt like I was

being appraised as Manchausen - I feel it so strongly

that I worry whether or not I'm feeling paranoid, but

then I remember her body language and I'm pretty sure

I'm not imagining things. So honestly I dread bigtime

going back there, especially if there was nothing

found. Then I don't think I could ever step back into

Children's with an ounce of creditability, as well as

my (new) pediatrician's office.

Oh well.

Contacting that momma now.

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[Guest guest]

I think the 3 day eeg is the most reliable but I'm not sure. I know

some get the 24 hour eeg and others get the 3 day. If it's that

sporadic, I would wonder whether the 3 day would be better since it

would be more likely to catch it. I don't know much about eeg's or

seizures as we haven't felt a need to go there. Does Dr. G request

eeg's from neurologists? Maybe you could get him to refer you? Many

ASD kids have seizure problems so I don't think it would be a stretch

to ask for one. If you have a concern, I don't think it's wrong to

investigate - no matter what the neuro says. I would question the

neurologists understanding of ASD if she is so adverse to doing it

that you would feel like you were being sized up for MBP! That would

tick me off to no end! If you can't talk to Dr. G, then I would make

an appointment with your new ped and tell them why you are concerned

and show them some literature on seizures and ASD. Let them know

that your concerns are valid, even if they are wrong. I'd rather be

proven wrong any day than be proven right through a health crisis.

cheryl

On Mar 6, 2007, at 9:15 AM, wrote:

> Oh yeah - I forgot another one. Twice now, he has

> cried in the morning because I gave him a spoon that

> was " too heavy " . He got real emotional about it, said

> it was too heavy for him to eat with. The first time

> it was a heavier 'good' quality spoon and the

> difference is measureable, the next time it was

> elcheapo lightweight, and he still said it was too

> heavy. He was soooo over-emotional about this it was

> pathetic, so unreasonable that I could only worry what

> was wrong with him.

>

> It appears the temporal lobe stuff could even explain

> why sometimes he's too tired to walk thru a parking

> lot yet hours later can play, why sometimes he can't

> start himself swinging or hold onto the swing and at

> other times he has no trouble. Or why he can go to

> the park and play happily, then suddenly come sit down

> saying he's too tired after only being there 5-10

> minutes. I've long begun to wonder if - since the

> fever 100.0 stopped back at the end of September, if

> the fatigue is real or inflammation in his brain.

>

> What I wonder now, is, would an EEG show it? I've

> been blown off hardcore by the neurologist, who stared

> me down at the last visit w/an expression that was

> very challenging, and whatever was going on in her

> mind, it was mean. I seriously truly felt like I was

> being appraised as Manchausen - I feel it so strongly

> that I worry whether or not I'm feeling paranoid, but

> then I remember her body language and I'm pretty sure

> I'm not imagining things. So honestly I dread bigtime

> going back there, especially if there was nothing

> found. Then I don't think I could ever step back into

> Children's with an ounce of creditability, as well as

> my (new) pediatrician's office.

>

> Oh well.

> Contacting that momma now.

>

>

> __________________________________________________________

> Need Mail bonding?

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

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

>

>

[Guest guest]

I haven't approached her with it yet.

I really started following this with your mention but

it makes the most sense of anything I've come across

yet.

But I know the negativity associated with the mom

reading on the internet trying to diagnose her child.

And a neuro? HAH! Going over a behavioral regression

and diminishing eye contact and changes in speech did

not raise any interest in her at all. Children's

Hospital - " excellent doctor " ... that phrase is

starting to make my neck crawl.

I'll be curious about the specialized equipment. With

the luck we've had with enthusiastic doctors truly

concerned with putting together all these symptoms,

I'm not very optimistic. But I'd enjoy a trip to

Austin Tx. Wonder if it's within driving distance of

Dr ?

Funny incidentals... last night's House episode was a

case of an aneurism in the temporal lobe and the woman

was hearing singing, and this morning on SpongeBob,

Sandy was going home to TX. Sometimes I just feel

like the message is.... get your butt out of

Birmingham and go to someone who really cares.

--- Googahly@... wrote:

> In a message dated 3/6/2007 11:16:56 AM Central

> Standard Time,

> thecolemans4@... writes:

>

> <<What I wonder now, is, would an EEG show it?>>

>

> The mother whose child has the deep temporal lobes

> said they didn't show up

> on a traditional EEG that it needed specialized

> equipment to read it. They

> went to some center in Austin, Tx to get a

> diagnosis. However, if your son's

> neuro is proclaiming him seizure free with no EEG at

> all, I'd find another doctor.

> Gaylen

>

>

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[Guest guest]

The center in Austin, TX is probably Thoughtul House. Awesome organization.

http://www.thoughtfulhouse.com

Re: Re: Visual spots plus other stuff (part 2)

I haven't approached her with it yet.

I really started following this with your mention but

it makes the most sense of anything I've come across

yet.

But I know the negativity associated with the mom

reading on the internet trying to diagnose her child.

And a neuro? HAH! Going over a behavioral regression

and diminishing eye contact and changes in speech did

not raise any interest in her at all. Children's

Hospital - " excellent doctor " ... that phrase is

starting to make my neck crawl.

I'll be curious about the specialized equipment. With

the luck we've had with enthusiastic doctors truly

concerned with putting together all these symptoms,

I'm not very optimistic. But I'd enjoy a trip to

Austin Tx. Wonder if it's within driving distance of

Dr ?

Funny incidentals... last night's House episode was a

case of an aneurism in the temporal lobe and the woman

was hearing singing, and this morning on SpongeBob,

Sandy was going home to TX. Sometimes I just feel

like the message is.... get your butt out of

Birmingham and go to someone who really cares.

--- Googahly@... wrote:

> In a message dated 3/6/2007 11:16:56 AM Central

> Standard Time,

> thecolemans4@... writes:

>

> <<What I wonder now, is, would an EEG show it?>>

>

> The mother whose child has the deep temporal lobes

> said they didn't show up

> on a traditional EEG that it needed specialized

> equipment to read it. They

> went to some center in Austin, Tx to get a

> diagnosis. However, if your son's

> neuro is proclaiming him seizure free with no EEG at

> all, I'd find another doctor.

> Gaylen

>

>

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> 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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[Guest guest]

,

A letter from you son's teacher regarding what she is seeing might buy you

some more credibility.

Is there ANY other neurologist you could see? I remember that doc you loved

who was working with people with Down Syndrome and left for a university.

Could he give you a name of a different neurologist?

Just brainstorming here.

Caroline

[Guest guest]

Hi Caroline -

You are so right about the teacher ... I have notes

from our last conversation and have a message in to

her to request that she write out her observations and

sign them. I've actually been planning to for a while

but can be really slow in accomplishing some things

grrr.

A mom in my state suggested another neurologist at

another hospital who's partner I've actually seen with

my older son, and frankly I think that is what it's

going to take.

Also, I'm going to go ahead and request psych

evaluation for him as well. Give me an hour with a

doctor and I just may be able to get enough history in

to make them call my pediatrician. Surprisingly I'm a

lot less stressed by psychiatrists and psychologists

than I am by medical doctors lol. (You'd think I'd be

more worried about what they'd find wrong with me

lol.) It helped when I was sick w/PANDAS - that

psychologist called up a doc she trusted that

frequently calls her and asks " Does this sound like

psych? Or should I keep looking? " and since then the

new team listens and keeps and open mind, and

fortunately my observations can be tracked rather

accurately thru labs once they do them. But that's

just more time waiting for an initial appointment, so

I'm going to request both.

Thank you

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

> ,

>

> A letter from you son's teacher regarding what she

> is seeing might buy you

> some more credibility.

>

> Is there ANY other neurologist you could see? I

> remember that doc you loved

> who was working with people with Down Syndrome and

> left for a university.

> Could he give you a name of a different neurologist?

>

> Just brainstorming here.

>

> Caroline

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[Guest guest]

I called a new neurologist's office at a different

hospital, told them what was going on, and they worked

us in Monday. She was very sweet - didn't imply

that there was any rush but that she knew I was

distressed so maybe they could ease my mind sooner

lol. And it did give me some peace. Funny, I will

even be surprised if they were to find anything, but

the not checking not investigating thing just wigs me

out.

Thanks-

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

> ,

>

> A letter from you son's teacher regarding what she

> is seeing might buy you

> some more credibility.

>

> Is there ANY other neurologist you could see? I

> remember that doc you loved

> who was working with people with Down Syndrome and

> left for a university.

> Could he give you a name of a different neurologist?

>

> Just brainstorming here.

>

> Caroline

>

>

>

>

>

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[Guest guest]

YES!

You march in there with your head held high, . You never know where

you will find a sympathetic ear, or when a doctor will begin to listen with

an open mind and understand.

One of my little guy's neurologists became a believer when I asked to have

his ferritin levels checked. He did it just to humor me and when they came

back low, he said " How did you know? " . I said it was part of the pattern.

From then on he was listening. In fact, he said he was excited to have my

son as a patient because he wanted to keep learning as we treated my son.

When I told my mom how this neurologist had changed his opinion, she was so

shocked. She said " I saw the way he looked at you when you asked if the

seizures could have something to do with his immune system. " Evidently he

looked at me like I was crazy. Not any more.

Caroline

> From: <thecolemans4@...>

> Reply-< >

> Date: Wed, 07 Mar 2007 15:35:29 -0800 (PST)

> < >

> Subject: Re: Re: Visual spots plus other stuff (part 2)

>

> I called a new neurologist's office at a different

> hospital, told them what was going on, and they worked

> us in Monday. She was very sweet - didn't imply

> that there was any rush but that she knew I was

> distressed so maybe they could ease my mind sooner

> lol. And it did give me some peace. Funny, I will

> even be surprised if they were to find anything, but

> the not checking not investigating thing just wigs me

> out.

>

> Thanks-

>

[Guest guest]

Hey Caroline -

Gosh I think it would be awesome to have a curious

interested doctor. I don't totally give up hope in my

current pediatrician because I do think she has that

potential ... but it's really a matter of getting to

know her first.

I have had that experience w/my doctors, though. It's

the only thing that has gotten me as far as I've made

it so far, too. I got where I am only by saying " I

know PANDAS sounds completely nuts, but if you will

simply consider it as a symptom and even possibly

believe that an ASO titer of 800 needs to be brought

down, and if you'll acknowledge that 150mg of iron

almost every day for 2 years has done nothing for my

anemia, and treat me as if I have a chronic infection,

and give me Diflucan to go w/the antibiotics, you will

see my iron come up and come up fast. I know it will

- it happened w/my son. He said well okay (irritably)

and he did, and it did. When he stopped, 6 weeks

later my iron was on it's way back down and I pointed

it out, and that got him. Now they're reading about

cellular immunity problems and doing the tests,

admitting they know nothing about it but the

literature is there, and we'll see what happens. It's

a great big waiting game though, but I can be patient

now that I trust that they'll give me some credit and

listen to me, whereas before, no one would. If

someone would just do that for my child. In fact,

perhaps I should talk to my doctor about my child....

I feel a sense of urgency to get this little boy on

antivirals now, and I clearly need to get him on a

plane out of town. I need him to start this before

his kindergarten year ends, so that the teacher would

be a resource in observing changes that we all know

from experience to expect. I need HER input and

observation, not mine, because of course if mom wants

a kid on a medicine and she gets it, she'll say the

kid was better, so it would HAVE to be an outside

observation.

I've been going thru my notes writing out the whole

history today for the Monday neurologist appointment.

He stopped antivirals at the end of 8/05 when we could

no longer financially manage the protocol due to my

illness and having to quit work. In Nov 2005, I had

to pull him out of his preschool because he was

keeping sinus infections and I discovered there was

mildew in their flooring. In March or April, I told

his pediatrician that I felt worried about him because

he just didn't seem to be bouncing back. In May 2006

thru Sept 2006 was when he started running the daily

low-grade 100.0 fever. In January he ran a fever one

day of 105 thru 106.9 and ended up at Children's After

Hours Clinic and he had strep - but he rarely gets a

fever w/strep throat. After that fever, he perked up

some and started playing more,etc, appearing to be on

the upswing and a bit brighter-eyed. Then

mid-February he started seeing the spots and it just

goes on.

Blah blah blah I hope you guys don't get tired of me

repeating myself lol. I can keep apologizing for

being long winded but I can't seem to stop.

One thing I'm struggling with is... how much

information is too much?

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

> YES!

>

> You march in there with your head held high,

> . You never know where

> you will find a sympathetic ear, or when a doctor

> will begin to listen with

> an open mind and understand.

>

> One of my little guy's neurologists became a

> believer when I asked to have

> his ferritin levels checked. He did it just to

> humor me and when they came

> back low, he said " How did you know? " . I said it

> was part of the pattern.

> From then on he was listening. In fact, he said he

> was excited to have my

> son as a patient because he wanted to keep learning

> as we treated my son.

>

> When I told my mom how this neurologist had changed

> his opinion, she was so

> shocked. She said " I saw the way he looked at you

> when you asked if the

> seizures could have something to do with his immune

> system. " Evidently he

> looked at me like I was crazy. Not any more.

>

> Caroline

>

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[Guest guest]

,

I have been thinking about that question for a couple of hours and I don't

know the answer. I did think that it might be helpful to review Dr.

Goldberg's last DVD if you have it and see how he presents the information.

What things does he mention first? How does he illustrate his points?

I would probably have the s Hopkins paper in hand to say... " Look...

this is what we are dealing with... when we supported my son's immune system

he improved " .

Maybe a sort of timeline of your son's health would be good.

I don't know... sorry I'm not more help...

Caroline

> From: meljackmom <meljackmom@...>

> Reply-< >

> Date: Thu, 08 Mar 2007 20:17:15 +0000

> < >

> Subject: Re: Visual spots plus other stuff (part 2)

>

> One thing I'm struggling with is... how much

>> information is too much?

>>

>>

[Guest guest]

Thanks, though. That's not really a question that can

be answered until I get in there and see how he

responds, I guess.

I can write out the history and leave it at that.

I also realized this afternoon... something will start

showing up in the labs. He oughta be getting anemic

by now, and I'll bet his thyroid levels are showing

the illness pattern. And the labs were done back in

January (for workup to see Dr since I need tx

too) right after a checkup showing he was " well " . So

I'm kindly begging the pediatrician's office to try to

obtain them for me and will see what we've got there.

Anway, you've been a great help. I was shutting down

from anxiety and feeling really helpless ... a

reaction I was having when I was particularly sick,

too, because I don't trust the docs to 'find

anything'. But you moms have really helped me and

helped me direct my energy to being a lot more useful.

You guys (girls) are awesome. Thank you. This would

be a much lonlier place without chya.

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

> ,

>

> I have been thinking about that question for a

> couple of hours and I don't

> know the answer. I did think that it might be

> helpful to review Dr.

> Goldberg's last DVD if you have it and see how he

> presents the information.

> What things does he mention first? How does he

> illustrate his points?

>

> I would probably have the s Hopkins paper in

> hand to say... " Look...

> this is what we are dealing with... when we

> supported my son's immune system

> he improved " .

>

> Maybe a sort of timeline of your son's health would

> be good.

>

> I don't know... sorry I'm not more help...

>

> Caroline

>

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[Guest guest]

It was about exactly 9 months from when antivirals

ended and the low grade temp began.

Very very interesting. Not that I haven't had more

than a moment's doubt that this is HHV6.

--- meljackmom <meljackmom@...> wrote:

> My son is fine and dandy on antivirals, antifungals,

> and

> antibiotics. Decrease the antiviral and he slowly

> (it took 9 months)

> trickles away. Take away the antibiotic, and he

> winds up

> ill/off/irritable/tantrumy/whatever 1-2 months

> later. (We have not

> removed antifungals.)

>

> I hope your doc listens.

>

>

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[Guest guest]

In a message dated 3/8/2007 6:23:12 PM Central Standard Time,

thecolemans4@... writes:

<<He oughta be getting anemic by now, and I'll bet his thyroid levels are

showing

the illness pattern.>>

Can you elaborate a bit on how the thyriod levels show an illness pattern?

Gaylen

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[Guest guest]

It's called Euthyroid sick syndrome where they start

showing like low T3 and/or maybe T4 without

necessarily elevating the TSH (stimulating hormone).

It's basically having low levels that aren't the same

as basic hypothyroidism. It can vary but it relates

to illness. It resolves when infection or illness is

treated.

It's one of those subtle markers, like iron-deficient

anemia and slightly elevated liver enzymes and low NK,

that can be a clue that a chronic viral infection is

going on even when you can't identify the infection.

Seems like Dr Cheney referred to it as compensatory

hypothyroidism, like maybe it happens to stop fevers?

I've not actually read about that, but I suspect my

son's thyroid may have crapped out after the 5 months

of fever to lower his temp to normal rather than keep

running a useless temp? Simple hypothesis w/no real

backing there.

Even w/my hypothyroidism, the ESR pattern shows up in

addition to the iron anemia and convinces the docs

that I do have chronic infection. Thank goodness for

it.

Later-

--- Googahly@... wrote:

> In a message dated 3/8/2007 6:23:12 PM Central

> Standard Time,

> thecolemans4@... writes:

>

> <<He oughta be getting anemic by now, and I'll bet

> his thyroid levels are

> showing

> the illness pattern.>>

>

> Can you elaborate a bit on how the thyriod levels

> show an illness pattern?

> Gaylen

>

>

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[Guest guest]

Oh - forgot to mention - emedicine mentions it appears

to be cytokine related.

--- Googahly@... wrote:

> In a message dated 3/8/2007 6:23:12 PM Central

> Standard Time,

> thecolemans4@... writes:

>

> <<He oughta be getting anemic by now, and I'll bet

> his thyroid levels are

> showing

> the illness pattern.>>

>

> Can you elaborate a bit on how the thyriod levels

> show an illness pattern?

> Gaylen

>

>

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

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