Re: Re:Kim, Kristy / - MEG, Jackie K read

[Guest guest]

Kim,

Nice work-I've actually gone on that web site-probably printed it all out,

and never got back to reading it. Well, I would say she does not meet those

criteria.

I had been sitting on this diagnosis since November. I e-mailed Meg back

then about it-and she referred it to Dr. Davenport. I didn't want to give the

group something more to have to think about if it wasn't relevent. At this

point, there is no evidence that chiari should be included. 's

neurosurgeon knows of no relationship. The same is true for head of neuro at

Columbia Univ. Hsptl, NYC, whom I emailed.

I did read some articles on genetics, and Duke U. is looking at the

genetics of chiari, which I forwarded to Meg. Nothing yet to suggest an

overlap.

I just couldn't keep it to myself any longer if there was some way (as in

talking to you all) to get better info. I'll tell you, between traveling back

in time listening to the babies' challenges, and then looking at this for

20 yrs. later-(and throw in the divorce memories for fun)-blahhhhhhhhhhh!

Anyway-thanks again for your efforts. I want to look at vestibular-and

answer Ur questions still-hang on-I'll get there. Thanks a million,

[Guest guest]

Kim, _www.madsci.org/posts/archives/apr99/924734804.Me.r.html_

(http://www.madsci.org/posts/archives/apr99/924734804.Me.r.html)

vagal response.

[Guest guest]

Kim-re protrusions-doc. said was probably born that way. But

prolonged coughing can also bring it on-their example was such as with repeated

bouts

of pneumonia, bronchitis. etc. They never got around to mentioning a child

with a trach-and the massive strain of choking and suctioning.

[Guest guest]

Dear Kim-I think U've started a new branch of medicine: " medical

philosophist " . I love it!!!!!!

I absolutely think you're on to something-even if we can't ever prove it.

More questions, more " anecdotal " information, beyond the CHARGE initials,

could very well lead us all to new, vital information and understanding. I'm

not

content to lump all those million little quirks into one definition and then

leave it alone, as if it were solved.

U keep hypothosizing-thats how all discoveries are made-good work.

P>S> re Dylan-this won't be much help-but, colobomas make the eyes very

sensitive to bright light and sunlight (u no doubt know), florescent lights

flikker (?) could be a strobe type reaction for him which can produce

seizure-type

brain activity. Last thing U mentioned was heat. (need to double check a

reference b4 commenting.) will do so now.

There's a chiari group at chiariconnect.org-not very active anymore, but

they mention problems with heat. (they sound like they have broken

thermostats.)

And one talked of getting a metal taste in her mouth-same thing I found

this a.m. while looking at vagal response. They too, wonder what the heck is

going on with the nerves. I asked 's neuro if we had concerns with the

cranial nerves-he said no. (no big discussion there.)

Ok-I'm done bugging U for awhile. Thanks,

[Guest guest]

Kristy-good tips, I was in quite a state when I met with the surgeon-had all

kinds of new med terms swimming in my head-wasn't really ready-but he gave

me his e-mail address-he's a cutey. Enjoy the movie. We go in for repeat

tubes every couple of years. This year she was old enuf-big enuf-they put in

the long-lasting model.-I wish I had known earlier that such a thing existed.

Thanks alot,

[Guest guest]

OK, so I read up on it just a little and now I want to know more. Could

someone please explain Chiari a little here? Thanks.

Bonnie, mom to a 23, Patty CHARGE 21, and wife to

[Guest guest]

,

I did a quick search to learn more about it myself. This from the Chiari

Institute in Great Neck, New York as a start.

As much as we talk about these CHARGE issues and the impact of cranial

nerves, cerebellum, and the success of CST with some of the kids, it does

make one wonder. I keep thinking of Meg telling Chip that he didn't really

have all those other syndromes, it is just part of CHARGE.

Meg, have we found Chiari malformations to be part of CHARGE as well??????

Is it something we need to look at more closely, especially the older

CHARGErs who have seizure-like episodes????

Kim

TREATMENT

The decision to treat patients surgically requires a detailed consultation

between the patient and physician. As a general rule, surgery is not

recommended unless one or more of the following conditions is met:

Evidence of neurological deterioration.

Progression of symptoms that have become unbearable or disabling.

MRI evidence of syrinx enlargement.

Surgery is not recommended to prevent problems from occurring in the future

because the natural history of CM and SM is incompletely understood.

http://www.chiariinstitute.com/chiari_treatment.html

> Yes Kim. Exactly how I feel-such a major response for something that seems

> so typical for Charge kids. Yet, that protrusion is there. The cerebellar

> tonsils have protruded 25 cm. below the base of the spine. I think that's a

> significant amount as far as chiari goes-I'd like to know for sure,but she

> isn't having very many of the symptoms associated with chiari. Those symptoms

> that she does have are that: her scoliosis has progressed, her balance is off

> a

> bit more than usual, and her compensatory gait is exagerating somewhat. She

> also grew another 2 " over the past 2 yrs (even tho they thought she would not

> once they brought on her period with HRT.) That could throw her off, I would

> think.

> In relation to vagal response-because reported she was not straining

> on the toilet, it was dismissed. But every episode has been in the a.m. ; 3x

> on arising, and 1x after leaving 1st morning class (where she'd been

> sitting) That morning she had had gatorade with breakfast (gatorade is

> supposed to

> help avoid a vagal response.)

> Kim,I want to print out Ur post and answer as concisely as possible-(I too

> have lots of gray fluff) and I want to call Di to see if she can identify

> having had a metal taste.

> I'm so so grateful that U and Kristy are willing to put your attention to

> this matter. No matter how much info I gather, its not good enough unless it

> is analyzed under the auspices of CHARGE. There's more to report re cardiac

> and gi follow up, also pulmonary. I'm not good at being brief, but I'll do my

> best.

> to Kristy- is will be 21 yrs old April 30th. Thanks again, I'll be

> back.

>

>

>

>

[Guest guest]

What I want to know are what are the other things that would trigger a vagal

response besides straining. My observations of Dylan suggest that his can

be influenced by bright light such as the florescent lights in Target or in

bright sunlight (That is complicated by if it is the heat).

Or can the vagal response simply be in response to too many tiny stressors

and the vagus nerve shuts things down for a bit?

Again, only questions.....

Kim L

> In relation to vagal response

[Guest guest]

pain, fear, excitement,

-I copied these words from the link you included. Somehow,how our

children process stress (the taking in of and making sense of new info at a

primary brain function / sensory level) has to be involved in these

episodes, no matter what we call them. It does not explain Chiari, but the

hypotonia, scoliosis and so on - I wonder if they create an opening that

allows for the protrusion and if they are resolved then the protrusion would

not be possible. I have no idea if that is even slightly possible, it just

makes me wonder. Is it possible that the cerebellum herniates at some times

and not at others? So many questions to ponder. Generally there is not a

need to really know, as long as we can handle the symptoms, but in the case

of deciding surgery or not, it does require more thought. And I know most

docs think I am looney, because I do wonder about such things.

Kim L

> Kim, _www.madsci.org/posts/archives/apr99/924734804.Me.r.html_

> (http://www.madsci.org/posts/archives/apr99/924734804.Me.r.html)

> vagal response.

>

>

>

[Guest guest]

, I blind copied Judith Bluestone from HANDLE on my query about vagal

responses and florescent lights. Here is her reply. Kim

Kim

To you, not the whole list serve, but you are free to share that this is

what I answered:

The vagus nerve reads out how our internal organs feel. It therefore

responds to almost any form of stress, since all stress effects the

functioning of our internal organs--heart, lungs, intestines, stomach, etc.

The autonomic nervous system and the vagus nerve are integrally related in

the areas they serve and to my mind it is the vagus nerve that gives us

early readouts of ANS problems that may in turn result in many other

problems, including immune system problems, and nutritional problems, etc.

I am not sure this is making any sense, but I don't have the time right now

to be more explicit than this. Of course, The Fabric of Autism gets into

these interactive loops quite a bit and is relevant to many (most?) other

disorders, not just autism.

Judith

> Kim-re protrusions-doc. said was probably born that way. But

> prolonged coughing can also bring it on-their example was such as with

> repeated bouts

> of pneumonia, bronchitis. etc. They never got around to mentioning a child

> with a trach-and the massive strain of choking and suctioning.

>

>

>

[Guest guest]

Yeah way beyond my expertise too, I just keep asking questions. Kim

> Kim,

> this is way beyond my expertise. As I had mentioned to before,

> I had not herad of it in other kids with CHARGE - not that that means

> much, eh? I'll try again to get an opinion from Dr. Davenport - I'll

> let you know if I hear anything useful. Othersiwe, I'd say, tuck it

> in the back of your mind (oops - no pun intended) to mention to

> doctors if there are symptoms.

> Meg

[Guest guest]

And I am done bugging you. I have to turn my brain off from this tangent

and do my real work. Kim

Oh and yes, I think Dylan acts like he has a broken thermostat, not as much

now when everything else is stable autonomic nervous system wise, but when

he was younger for sure!

> Dear Kim-I think U've started a new branch of medicine: " medical

> philosophist " . I love it!!!!!!

> I absolutely think you're on to something-even if we can't ever prove it.

> More questions, more " anecdotal " information, beyond the CHARGE initials,

> could very well lead us all to new, vital information and understanding. I'm

> not

> content to lump all those million little quirks into one definition and then

> leave it alone, as if it were solved.

> U keep hypothosizing-thats how all discoveries are made-good work.

> P>S> re Dylan-this won't be much help-but, colobomas make the eyes very

> sensitive to bright light and sunlight (u no doubt know), florescent lights

> flikker (?) could be a strobe type reaction for him which can produce

> seizure-type

> brain activity. Last thing U mentioned was heat. (need to double check a

> reference b4 commenting.) will do so now.

> There's a chiari group at chiariconnect.org-not very active anymore, but

> they mention problems with heat. (they sound like they have broken

> thermostats.)

> And one talked of getting a metal taste in her mouth-same thing I found

> this a.m. while looking at vagal response. They too, wonder what the heck

> is

> going on with the nerves. I asked 's neuro if we had concerns with the

> cranial nerves-he said no. (no big discussion there.)

> Ok-I'm done bugging U for awhile. Thanks,

>

>

>

[Guest guest]

Bonnie, thought I'd add a bit more on chiari-there is type I and type II,

type II would be obvious and easily diagnosed. Type I presents with many of

the same involvements we see in Charge, differentiation is difficult. If both

are present-U start to wonder which is the chicken and which is the egg.

(which is some of what Kim and I were doing this a.m.)

However, muscle pains, intense response to temperature, both internal and

external, headaches, neck aches, are frequent chiari patient responses. There

is a lot of speculation on various websites about a correlation between

fibromyalgia and chiari I malformation.

As I mentioned earlier post-I asked the neuro surgeon a really ingenious

question (LOL). I blurted out-are we concerned with the cranial nerves? his

answer was- " no " . I was still in " shock " I didn't have any " awe " to back it

up. I'll get another appt with him-and try to be better prepared. This time

around, I was more waiting to see what his verdict was. Altho he feels

surgery is the thing to do-as Kim found from the website I referenced to U,

they

do not easily or quickly recommend it. So, I'm in " seek and find " mode. I'm

just suggesting that as U read, U will find many things that seem to apply to

Chargers-and I'm not so sure that they are significant to Charge in reality.

Guess thats what we're trying to determine. Is it a side-by-side occurance,

or an over-lap?or who knows. Keep the faith,

[Guest guest]

My Charger has been diagnosed with Chiari malformation also. By a

surgeon at Riley childrens hospital and 2nd opinion at Shriners for

children in Chicago. I also have a client with this. kim/michigan

Re: Re:Kim, Kristy / - MEG, Jackie K read

,

I did a quick search to learn more about it myself. This from

the Chiari

Institute in Great Neck, New York as a start.

As much as we talk about these CHARGE issues and the impact of

cranial

nerves, cerebellum, and the success of CST with some of the

kids, it does

make one wonder. I keep thinking of Meg telling Chip that he

didn't really

have all those other syndromes, it is just part of CHARGE.

Meg, have we found Chiari malformations to be part of CHARGE as

well??????

Is it something we need to look at more closely, especially the

older

CHARGErs who have seizure-like episodes????

Kim

TREATMENT

The decision to treat patients surgically requires a detailed

consultation

between the patient and physician. As a general rule, surgery is

not

recommended unless one or more of the following conditions is

met:

Evidence of neurological deterioration.

Progression of symptoms that have become unbearable or

disabling.

MRI evidence of syrinx enlargement.

Surgery is not recommended to prevent problems from occurring in

the future

because the natural history of CM and SM is incompletely

understood.

http://www.chiariinstitute.com/chiari_treatment.html

> Yes Kim. Exactly how I feel-such a major response for

something that seems

> so typical for Charge kids. Yet, that protrusion is there.

The cerebellar

> tonsils have protruded 25 cm. below the base of the spine. I

think that's a

> significant amount as far as chiari goes-I'd like to know for

sure,but she

> isn't having very many of the symptoms associated with

chiari. Those symptoms

> that she does have are that: her scoliosis has progressed,

her balance is off

> a

> bit more than usual, and her compensatory gait is exagerating

somewhat. She

> also grew another 2 " over the past 2 yrs (even tho they

thought she would not

> once they brought on her period with HRT.) That could throw

her off, I would

> think.

> In relation to vagal response-because reported she was

not straining

> on the toilet, it was dismissed. But every episode has been

in the a.m. ; 3x

> on arising, and 1x after leaving 1st morning class (where

she'd been

> sitting) That morning she had had gatorade with breakfast

(gatorade is

> supposed to

> help avoid a vagal response.)

> Kim,I want to print out Ur post and answer as concisely as

possible-(I too

> have lots of gray fluff) and I want to call Di to see if she

can identify

> having had a metal taste.

> I'm so so grateful that U and Kristy are willing to put your

attention to

> this matter. No matter how much info I gather, its not good

enough unless it

> is analyzed under the auspices of CHARGE. There's more to

report re cardiac

> and gi follow up, also pulmonary. I'm not good at being brief,

but I'll do my

> best.

> to Kristy- is will be 21 yrs old April 30th. Thanks

again, I'll be

> back.

>

>

>

>

[Guest guest]

,

I am glad you have been getting a lot of help from Kim. Does not fit the

criteria? I am trying to peek at all of the posts and catch up

One post stated surgery was not performed for ChiariI, but I know that it is

done here (I wonder if I misread the post)? Here is one suggestion that you

probably already do, when you go to a doctor's appointment: take a pad of paper

with all of your questions written down on it. The physician should should be

willing to answer ALL of your questions. If he is in too big of a hurry, find a

new physician (what would he/she be like in the OR--if he or she is a surgeon)?

As they answer, write it down. Also, on important appointments, take someone

else with you-the doctor might say something that might stick in your head but

the doctor is going to keep on with the conversation. Your other person will

catch what you missed in the conversation. These are just some suggestions.

Tyler is having bilateral myringotomy tubes (9th or 10th set) placed tomorrow

and I am trying to get a few things prepared. He always has bradycardia

post-op, not sure whether we'll stay a night in my unit or not (I couldn't

convince my intensivist to loan my an oximeter for the night)!

Take care. I will check back later. We are taking Tyler to see Harry Potter

(gotta spoil him before surgery).

Kristy

Re: Re:Kim, Kristy / - MEG, Jackie K read

Kim,

Nice work-I've actually gone on that web site-probably printed it all out,

and never got back to reading it. Well, I would say she does not meet those

criteria.

I had been sitting on this diagnosis since November. I e-mailed Meg back

then about it-and she referred it to Dr. Davenport. I didn't want to give

the

group something more to have to think about if it wasn't relevent. At this

point, there is no evidence that chiari should be included. 's

neurosurgeon knows of no relationship. The same is true for head of neuro at

Columbia Univ. Hsptl, NYC, whom I emailed.

I did read some articles on genetics, and Duke U. is looking at the

genetics of chiari, which I forwarded to Meg. Nothing yet to suggest an

overlap.

I just couldn't keep it to myself any longer if there was some way (as in

talking to you all) to get better info. I'll tell you, between traveling

back

in time listening to the babies' challenges, and then looking at this for

20 yrs. later-(and throw in the divorce memories for

fun)-blahhhhhhhhhhh!

Anyway-thanks again for your efforts. I want to look at vestibular-and

answer Ur questions still-hang on-I'll get there. Thanks a million,

[Guest guest]

i have prob.lems with heat and cold soemtimes interesting

>

> Bonnie, thought I'd add a bit more on chiari-there is type I and

> type II,

> type II would be obvious and easily diagnosed. Type I presents with many

> of

> the same involvements we see in Charge, differentiation is difficult. If

> both

> are present-U start to wonder which is the chicken and which is the egg.

> (which is some of what Kim and I were doing this a.m.)

> However, muscle pains, intense response to temperature, both

> internal and

> external, headaches, neck aches, are frequent chiari

> patient responses. There

> is a lot of speculation on various websites about a correlation between

> fibromyalgia and chiari I malformation.

> As I mentioned earlier post-I asked the neuro surgeon a really ingenious

> question (LOL). I blurted out-are we concerned with the cranial nerves?

> his

> answer was- " no " . I was still in " shock " I didn't have any " awe " to

> back it

> up. I'll get another appt with him-and try to be better prepared. This

> time

> around, I was more waiting to see what his verdict was. Altho he feels

> surgery is the thing to do-as Kim found from the website I referenced to

> U, they

> do not easily or quickly recommend it. So, I'm in " seek and find "

> mode. I'm

> just suggesting that as U read, U will find many things that seem to

> apply to

> Chargers-and I'm not so sure that they are significant to Charge in

> reality.

> Guess thats what we're trying to determine. Is it a side-by-side

> occurance,

> or an over-lap?or who knows. Keep the faith,

>

>

>