Re: overwhelmed/Education-- ALESSIA

June 13, 2002

In a message dated 6/13/02 7:25:30 AM Pacific Daylight Time, ryan4me@...

writes:

<< Dr. Axelrod (not sure on the spelling) in New

York that is an expert on dysautonomia...supposed to be one of the

top docs on that disorder from what I understand....just FYI

>>

Dr. Axelrod's main specialty is Familial Dysautonomia-an Ashkenazi Jewish

disease with major autonomic dysfunction. She reviewed 's records for

his pediatrician and suggested a mito evaluation. That was almost 1.5 years

ago.

Dena

June 13, 2002

On your daughters enlarged tonsils...how old is she??? My Luke who is

now 6 had HUGE (they were rated a 3 and 4 which I believe is about as

big as you get...they were almost touching in the back!)tonsils

starting spring of last year. Come to find out after going through

all the specialties again last year to determine if it were safe to

just remove them since he was having some choking problems, etc etc

(different than the normal ones he can have when crying) we left them

in because between the ages of 4 and 6 (maybe 5 and 6...anyway

somewhere in that span!) the tonsils can get HUGE and still be okay.

On the dysautonomia...does your daughter have that also???? Are they

now linking a connection between mito and dysautonomia???? Or are

they seen as two very distinct problems???? If separate problems

there is a doctor...Dr. Axelrod (not sure on the spelling) in New

York that is an expert on dysautonomia...supposed to be one of the

top docs on that disorder from what I understand....just FYI

> <that in going to them, I could finally just " relax and be a mom,

not

> feeling like I

> had to second guess or research everything. " This should be how we

should

> all feel with a trusted caregiver for our children.

>

> Thanks to the many docs, scientists, nurses, social service

personnel, etc.

> who DO respect parent advocates.>

>

> ABSOLUTELY! I am so thrilled every time someone here posts about

the

> wonderful

> doctors, teachers, therapists etc. that they and their kids have to

support

> them!!

> That's why I'm so obsessed with getting the word out (in my own

slow way)

> about these

> disorders, so that the incredible physicians/teachers/therapists

etc. who

> are out there

> not only learn from the medical perspective, but from the

parental/advocate

> perspective

> as well!

>

> And we've certainly benefitted from excellent teachers and

therapists! I

> never have to

> worry about Katelyn at preschool, because her teachers are so

interested and

> invested in

> her situation. They want to do anything they can to help! I'm

really torn

> about sending

> her to summer session. She only goes in the mornings, and she's

been out

> since May, but

> they want her to go back for a month in July, with totally different

> teachers and staff,

> who don't know her issues. Knowing how hot it is here in July and

August, I

> just don't

> know if I can do it... I mean it is 81 here now and it's 10:21 pm!

Barf,

> barf, barf,!

>

> And I DO feel that way about Dr. Cohen. I think that weird

fear/denial

> thing has kicked in

> though, I keep thinking how great it would be if he said there was

nothing

> wrong with her,

> then I like get a reality check and go, yeah right, what about the

seizures,

> dysautonomia,

> developmental delays etc. etc. Then I think, please, just let them

have an

> idea of what it

> is! Then of course, my ped thinks it's all in my head

or " atypical " and

> " unrelated " and so

> I start the whole cycle again.

>

> I took her in yesterday, because she's had this VERY enlarged

tonsil on one

> side and she's

> having trouble swallowing and is choking etc. The ENT couldn't get

us in

> until the end of

> the month and it was making me worry. Dr. Cohen's

partner/assistant, Dr.

> Tavvy is actually

> the one who pointed it out. So I take her in and he's like, " well

I don't

> think it's anything

> to worry about " . And we talk very briefly about the visit to

Cleveland, and

> then he says, " well

> the choking and swallowing problems aren't related to the enlarged

tonsil,

> they're autonomic. "

> Really? Hmmm... But then he goes on to say that although she was

> constantly, chronically ill

> from September to March of this year, round after round of

antibiotic, that

> he doesn't think

> there is an " underlying cause " . IE. There's nothing wrong with

this kid,

> mom.

>

> If he only knew how much I wish that would be true!

>

> Warmly,

> Alessia

>

> Even now, the world is bleedin'

> But feelin' just fine, all numb in our castle

> Where we're always free to choose

> Never free enough to find

> I wish something would break

> Cuz we're runnin' out of time.

> And I am overcome,

> I am overcome.

> Only water in my lungs,

> I am overcome.

>

> Lyrics by Ed Kowalczyk/Sung by Live

>

> We Will Never Forget the Victims, Families, Heroes,

> September 11, 2001

> ~~~~~^~~~~~^~~~~~^~~~~~^~~~~~^~~~~~^~~~~~^~~~~~^~~~~~^~~~~~

> Alessia Cowee, Children's Writer

> Advisory Committee member, North Central California, SCBWI

> Critique Group Coordinator Yuba County and Points North

> ~~~~~^~~~~~^~~~~~^~~~~~^~~~~~^~~~~~^~~~~~^~~~~~^~~~~~^~~~~~

June 13, 2002

I don't know enough about dysautonomia to know the differences.....I

do know a patient of hers that does have familial dysautonomia and

she was consulted on for Luke when he was undiagnosed because they

wondered if he had it......wondering now though if he does have some

dysautonomia tendencies and just not the familial that we were

looking for. Hmmmmmm.....

> In a message dated 6/13/02 7:25:30 AM Pacific Daylight Time,

ryan4me@m...

> writes:

>

> << Dr. Axelrod (not sure on the spelling) in New

> York that is an expert on dysautonomia...supposed to be one of the

> top docs on that disorder from what I understand....just FYI

>

> >>

>

> Dr. Axelrod's main specialty is Familial Dysautonomia-an Ashkenazi

Jewish

> disease with major autonomic dysfunction. She reviewed 's

records for

> his pediatrician and suggested a mito evaluation. That was almost

1.5 years

> ago.

>

> Dena

June 13, 2002

I don't know enough about dysautonomia to know the differences.....I

do know a patient of hers that does have familial dysautonomia and

she was consulted on for Luke when he was undiagnosed because they

wondered if he had it......wondering now though if he does have some

dysautonomia tendencies and just not the familial that we were

looking for. Hmmmmmm.....

> In a message dated 6/13/02 7:25:30 AM Pacific Daylight Time,

ryan4me@m...

> writes:

>

> << Dr. Axelrod (not sure on the spelling) in New

> York that is an expert on dysautonomia...supposed to be one of the

> top docs on that disorder from what I understand....just FYI

>

> >>

>

> Dr. Axelrod's main specialty is Familial Dysautonomia-an Ashkenazi

Jewish

> disease with major autonomic dysfunction. She reviewed 's

records for

> his pediatrician and suggested a mito evaluation. That was almost

1.5 years

> ago.

>

> Dena

June 13, 2002

Alessia,

I have to say your daughters tonsils sound alot like Luke's. It

actually started with one tonsil and I was sure that it was infected

somewhere even though it wasn't red. It to was blocking half his

throat and doing those things (he suddenly became a noisy sleeper,

etc etc etc).....we ran all kinds of labs looking for the source

including mono MANY times......eventually (months later) the other

tonsil began to increase and catch up. Recently the tonsils have

begun going down but it has been over a year in doing so. Hope that

is all it is for you.

P.S. At the same time he had all kinds of other symptoms crop

up...extreme sleepiness bordering lathargy, dark purple circles,

palid skin, etc etc etc.....coincidence or ?????

> ,

>

> <On your daughters enlarged tonsils...how old is she??? My Luke who

is

> now 6 had HUGE (they were rated a 3 and 4 which I believe is about

as

> big as you get...they were almost touching in the back!)

> between the ages of 4 and 6 (maybe 5 and 6...anyway

> somewhere in that span!) the tonsils can get HUGE and still be

okay.>

>

> My daughter will be 4 on Aug 31. And actually, if it were BOTH

tonsils,

> I wouldn't be concerned, just figure they were growing, or

something.

> But it is only the right tonsil, which has been becoming steadily

more

> enlarged over the last 4 weeks. Doc said it was rated a 4...

> It is now touching, almost attached to the uvula, thus blocking one

half of

> her throat.

> There is no sign of infection ON the tonsil itself, so perhaps just

a

> response

> to some unknown infection...

> But she is having a lot of trouble swallowing, even choking on

fluids, and

> I wonder if that is why she isn't eating much/anything either...

>

> <On the dysautonomia...does your daughter have that also???? Are

they

> now linking a connection between mito and dysautonomia????>

>

> As to mito and dysautonomia in general, I know that many with mito

have

> impaired autonomic function. With my daughter, as we don't have a

diagnosis

> yet, I'm not sure what the thoughts are. My impression was that

Dr. Cohen

> was thinking atypical migraine with autonomic manifestations...

>

> Thanks for telling me about your son, though. If it persists, I'll

be

> taking her

> to an ENT at the end of the month.

>

> Warmly,

> Alessia Cowee

>

> Even now, the world is bleedin'

> But feelin' just fine, all numb in our castle

> Where we're always free to choose

> Never free enough to find

> I wish something would break

> Cuz we're runnin' out of time.

> And I am overcome,

> I am overcome.

> Only water in my lungs,

> I am overcome.

>

> Lyrics by Ed Kowalczyk/Sung by Live

>

> We Will Never Forget the Victims, Families, Heroes,

> September 11, 2001

> ~~~~~^~~~~~^~~~~~^~~~~~^~~~~~^~~~~~^~~~~~^~~~~~^~~~~~^~~~~~

> Alessia Cowee, Children's Writer

> Advisory Committee member, North Central California, SCBWI

> Critique Group Coordinator Yuba County and Points North

> ~~~~~^~~~~~^~~~~~^~~~~~^~~~~~^~~~~~^~~~~~^~~~~~^~~~~~^~~~~~

June 13, 2002