hello

[Guest guest]

Hi Charlene,

Sorry to hear about your incision not healing. Perhaps because of

the " hernia repair " you had a larger wound to heal than many who have

the colon resection operation, so things didn't go as fast for you.

I know what they're saying about waiting on the chemo though. Chemo

kills ALL " fast growing " cells (cancerous or not), and could well

interfere with the healing process & result in serious problems.

I wish I could offer some advice about the colostomy, but don't

have one myself so I'm not really qualified to say much ;o) There

are others here who hopefully can tell you more...they probably

haven't seen your post yet. Guess today is just a " slow day "

after all the intense Board activity earlier in the week!

Best Wishes,

[Guest guest]

Tammy,

Glad to hear things have been going better emotionally for everyone

in your family!

Will be thinking of you guys next week and hoping the first chemo

session goes well. Please let us know what happens!

Best Wishes,

> I want to tell you all thanks for all the advice you have giving

me. I haven't got hubby to start eating right yet, but Monday I

finally talked to him about the way he has been acting and he has

really mellowed out since then. I seen today he finally drank a can

of boost. so hopefully that is a start. Chemo starts next Wednesday

and he told me yesterday he is getting scared. And I guess to be

honest so am I. I am so grateful that my daughter found you all. I

pray for all of you each night.

> take care,

> tammy

[Guest guest]

-

Glad to have you with us!! I'd say it's quite an accomplishment to have been

able to type that second part. It can't be easy to carry on. (Aubrie's

older brother) was a blessing to us in the crisis of her early months because he

forced us to get on with " normal " life. I imagine that is doing the same

for you. Hugs and peace to you...

Michele W

Aubrie's mom

Hello

just wanted to let everyone know and I are doing ok I am still

lurking on the list LOL

mom to CHARGE 9/3/01-8/3/03 (wow is that second part tough to

write) and 3/27/03

http://community.webtv.net/maryechick12/

http://community.webtv.net/maryechick12/

[Guest guest]

Glad you are still hear. You will be a blessing to many. You are in my prayers.

Lynn

Hello

just wanted to let everyone know and I are doing ok I am still

lurking on the list LOL

mom to CHARGE 9/3/01-8/3/03 (wow is that second part tough to

write) and 3/27/03

http://community.webtv.net/maryechick12/

http://community.webtv.net/maryechick12/

[Guest guest]

Michele, thanks so much for the thoughts on mike, and I hope your mom is

better---any news on the move? hope all is well there.

hello

>

>

> hi all, it's been awhile since I've written. just thought I'd give you

an update. Timmy recieved his first report card yesterday and did quite

well. we were happy with it, of course he needs improvement on handwriting,

ind. working skills and starting and staying on task at times. otherwise it

was all satisfactory and he even had excellant in music and library!!!

> he is starting to sign now when he speaks without realizing he's doing

it , and teaching us too.

> I have his iep meeting tomorrow, the first one in a long time I'm not

dreading or worrying about--how wonderful is that?!?!?

>

> on another note, I can tell you, cause who are you going to tell, and

you're like family anyway...Pat's next oldest brother just found out he has

ms--it's mild and has probably had it since his teens--he will be 41 in Jan.

they are starting med. as soon as the insurance ok's it--luckily his wife is

a nurse and can administer the shots 1x a week. but they aren't telling

anyone except immediate family as of now, but if you could just keep Mike in

your prayers it would be much appreciated. of course when one hears of

these things the worst comes to mind, and although those things could happen

we hope not. thanks for your thoughts, hope everyone is well and school is

going well for your children also.

>

> mom to Timmy 8 ChARGE, keegan 5.5, liam 3, wife to pat

>

>

[Guest guest]

Hi Cris,

Welcome to the list. My, two special little ones, you really do

have your hands full! What are their ages? Please, tell us more about

your daughter - what CHARGE issues does she have?

Smiles from,

Baker - Mom to Jeff (19 yrs. CHARGEr), Steve (20 yrs. and serving a

Mission in Brazil), and others married with children of their own.

Idaho, USA

Hi my name is Cris and i am new to the list. My daughter May has

charge and i also have a seven year old son with down syndrome his

name is JR. I just wanted to introduce ourselves. I look foward to

chatting and sharing with everyone. Happy New Year!

Cris

________________________________________________________________

The best thing to hit the internet in years - Juno SpeedBand!

Surf the web up to FIVE TIMES FASTER!

Only $14.95/ month - visit www.juno.com to sign up today!

[Guest guest]

Hi ,

Welcome back.

Aspergers is part of the Autism spectrum, some people call it high

functioning autism, so it relates to all the previous discussions that have

been on the list about is it CHARGE or is it autism and for that there are

many different opinions.

For me I feel that although Dylan definitely meets the diagnostic criteria,

my observations lead me to believe that what I see in Dylan is very autistic

like, but it is not the same as those kids I see with pure autism. There is

too much variability in his state and function for me to see it as pure

autism.

If you like science and want to understand more read on, otherwise stop

here.

It so happens that I was reading a genetics related book today, talking

about the impact of serotonin on behavioral disorders, which we have

discussed on here before. It seems fairly clear to me that serotonin is

definitely involved. This book was describing the types of symptoms you get

if the serotonin level is low, if the serotonin receptors are hypersensitive

or if the serotonin levels are high. The thing that was interesting to me

is that it seems that Dylan and other CHARGErs move through these levels

rather than it being a condition where it is fairly stable.

According to this book, low serotonin leads to disorders of impulsivity

(executive function like ADD), aggression (hurting self or others), and

depression. Low levels can lead to hypersensitivity of serotonin receptors,

which produces symptoms, such as obsessive-compulsive disorder, and panic

attacks. Pure autism is usually associated with high levels of serotonin,

although other types of autistic syndromes, such as found in some other

syndromes (Fragile X, Rett Syndrome) is associated with low levels of

serotonin. Obviously picking the right medication, for the right problem is

crucial.

Although I can only understand a tiny bit of the chemistry when I read these

books, it is clear that it is important to find a doctor who understands the

process of how serotonin is made and broken down, the different types of

serotonin receptors, and how the different medications effect this change.

Are they making more serotonin, are they blocking the breakdown of

serotonin, are they blocking the serotonin receptors etc? Also finding a

doctor who is willing to learn more about CHARGE Syndrome and its behavioral

phenotype is important before they start adding more labels and prescribing

medications.

The other thing that may be of note to some people is that this doc says

that when treating the OCD stuff they are likely to get worse before they

get better, because you are dealing with the hypersensitive receptors, and

the receptors will calm down after being on the meds for awhile.

Another theory to consider in our attempt to understand the multiple

variables that come together to create this grouping of behaviors in our

kids.

Kim

Mom to Dylan 7 CHaRGE, Kayla 13, Tyler 15

>

> hello

>

>

> hi all, I feel soooooooo out of the loop!! for some reason my yahoo account

> stopped and I wasn't getting mail. but I guess I've gotten resolved because I

> just got some mail!! yea!!

>

> we have been very busy here--mostly going to see our friend wayne who does

> tim's orthotics--he ahs gotten ones that come up above the knee now. he is

> much more stable and is to the point he wears them almost 12 hours a day--on

> school days. but, because there's more to them there's more to rub and

> irritate his feet and legs, so we've been back (an hour each way) about 4

> times now. I " think " we have them right now--I hope!!

>

> we are also seeing a phsychologist for behaviors--and he has suggested a

> possability of asperger syndrome---I got some info from the internet. any

> thoughts from those of you with behavior issues? has this been mentioned to

> any of you?

>

> tim is off this week for winter break and now that grandma has retired she

> came to get him today and he is staying with them until I get him friday am to

> go to the octularist--have to get as many appts in this week as possible.

> have a good day everyone, and I'm glad I can concerse with you again--I missed

> you!!

>

> maria mom to timmy 8 ChARGE, keegan alomst 6 and liam3 wife to pat

>

>

[Guest guest]

HI ,

Great things to want and I think what we would all like. We'll leave the

actual monitoring of serotonin levels, its precursors, and the metabolites

to research studies, because they often check spinal fluid. Some tests can

be done via blood or urine, but at this point I don't think there is any

tight link between what they find and what they do.

I think it is more important that the doctor understand what has been

learned from all this research. It is not reasonable to expect us to

understand all the intricacies of the process, I just found it interesting

how our kids show symptoms from so many of the areas, indicating a

fluctuation in levels rather than symptoms that indicate they almost always

have high or low levels, which makes me curious about how you choose an

appropriate medication.

There are so many people out there looking into how we can improve the

social lives of our children; communication, interactions with friends,

self-regulation etc. that I know there will be answers.

For now do your best to find what works for Timmy.

Kim

> WOW!!!! and how do they measure the levels of serotonin? I just want to be

> able to tolerate my child for a long time without feeling like I've been run

> over by a mack truck or feeling guilty for losing my cool with him. and I'd

> like his brothers to like being around him too. and I'd liek timmy to have

> friends his own age, not adults or kids too young to realize he's not

> appropriate in all his actions. maybe I'm hoping for too much!

>

>

> hello

>>>

>>>

>>> hi all, I feel soooooooo out of the loop!! for some reason my yahoo

> account

>>> stopped and I wasn't getting mail. but I guess I've gotten resolved

> because I

>>> just got some mail!! yea!!

>>>

>>> we have been very busy here--mostly going to see our friend wayne who

> does

>>> tim's orthotics--he ahs gotten ones that come up above the knee now. he

> is

>>> much more stable and is to the point he wears them almost 12 hours a

> day--on

>>> school days. but, because there's more to them there's more to rub and

>>> irritate his feet and legs, so we've been back (an hour each way) about

> 4

>>> times now. I " think " we have them right now--I hope!!

>>>

>>> we are also seeing a phsychologist for behaviors--and he has suggested a

>>> possability of asperger syndrome---I got some info from the internet.

> any

>>> thoughts from those of you with behavior issues? has this been

> mentioned to

>>> any of you?

>>>

>>> tim is off this week for winter break and now that grandma has retired

> she

>>> came to get him today and he is staying with them until I get him friday

> am to

>>> go to the octularist--have to get as many appts in this week as

> possible.

>>> have a good day everyone, and I'm glad I can concerse with you again--I

> missed

>>> you!!

>>>

>>> maria mom to timmy 8 ChARGE, keegan alomst 6 and liam3 wife to pat

>>>

>>>

[Guest guest]

thanks kim

hello

> >>>

> >>>

> >>> hi all, I feel soooooooo out of the loop!! for some reason my yahoo

> > account

> >>> stopped and I wasn't getting mail. but I guess I've gotten resolved

> > because I

> >>> just got some mail!! yea!!

> >>>

> >>> we have been very busy here--mostly going to see our friend wayne who

> > does

> >>> tim's orthotics--he ahs gotten ones that come up above the knee now.

he

> > is

> >>> much more stable and is to the point he wears them almost 12 hours a

> > day--on

> >>> school days. but, because there's more to them there's more to rub

and

> >>> irritate his feet and legs, so we've been back (an hour each way)

about

> > 4

> >>> times now. I " think " we have them right now--I hope!!

> >>>

> >>> we are also seeing a phsychologist for behaviors--and he has suggested

a

> >>> possability of asperger syndrome---I got some info from the internet.

> > any

> >>> thoughts from those of you with behavior issues? has this been

> > mentioned to

> >>> any of you?

> >>>

> >>> tim is off this week for winter break and now that grandma has retired

> > she

> >>> came to get him today and he is staying with them until I get him

friday

> > am to

> >>> go to the octularist--have to get as many appts in this week as

> > possible.

> >>> have a good day everyone, and I'm glad I can concerse with you

again--I

> > missed

> >>> you!!

> >>>

> >>> maria mom to timmy 8 ChARGE, keegan alomst 6 and liam3 wife to pat

> >>>

> >>>

[Guest guest]

thanks lynn

hello

>

>

> hi all, I feel soooooooo out of the loop!! for some reason my yahoo

account stopped and I wasn't getting mail. but I guess I've gotten resolved

because I just got some mail!! yea!!

>

> we have been very busy here--mostly going to see our friend wayne who

does tim's orthotics--he ahs gotten ones that come up above the knee now.

he is much more stable and is to the point he wears them almost 12 hours a

day--on school days. but, because there's more to them there's more to rub

and irritate his feet and legs, so we've been back (an hour each way) about

4 times now. I " think " we have them right now--I hope!!

>

> we are also seeing a phsychologist for behaviors--and he has suggested a

possability of asperger syndrome---I got some info from the internet. any

thoughts from those of you with behavior issues? has this been mentioned to

any of you?

>

> tim is off this week for winter break and now that grandma has retired

she came to get him today and he is staying with them until I get him friday

am to go to the octularist--have to get as many appts in this week as

possible.

> have a good day everyone, and I'm glad I can concerse with you again--I

missed you!!

>

> maria mom to timmy 8 ChARGE, keegan alomst 6 and liam3 wife to pat

>

>

[Guest guest]

hi all, life has been so crazy around here----I want to say stop the ride I want

off!! tim went to philly for growth hormone testing--it was a 3 1/2 hour test,

luckily pat was there also and tim slept through most of it. And when we got on

the elevator there was Donna Lacey--we spoke briefly, and she looked well. They

are doing well, but is hard for them all I'm sure. what's the chance of seeing

someone you know two minutes before you are ready to leave in a place that big?

we get the results of the testing this week or next --I hope. he is doing well

in school, I'm filling out the paper work for the dev. ped. so, maybe we can

get some answers on behavior.

I am going insane with pto things--YEARBOOK---if anyone ever asks you to do

it--politelly say thank you , no!! it's alot of work and only 2 of us doing it.

it's the same in most schools I'm sure. plus doing the spring fundraiser--and

then the carnival in may. I'll be glad to see June let me tell you!!!

keegan just turned 6!!! unbelievable!!! and liam is doing well--ready to go to

school all the time next year, well, keegan is asking why I didn't pack his

lunch liam needs dressed and we need to head out the door in 25 minutes , so I

better move on.....have a great day everyone!!

[Guest guest]

Hello Bonnie and ,

Good to see you, Pat and Tim the other week at CHOP, .

Things are settling down a bit....but then something always pops up. New -job

search stuff, daily stuff,managing the household by myself, accepted

into 2 colleges (her 2 top choices) and on and on......

Big news! Tim is coming home from the hospital on Friday. His sisters

are so excited.

A bit of " normalcy " to have Tim back home. It's been 4 months since he was

airlifted with the flu. And......here he is....back to his old self. They said

he has met and " exceeded " all of their expectations in his recouperation and

there is nothing more left for them to do.

Who'd a guess....being in heart and lung failure upon admission with bleeding

lungs that they would ever had said he exceeded their expectations. That's my

boy!!!

For the rest of life......we're all doing as well as can be expected.

Missing my husband horribly, though. We had the most excellent marriage and he

was a most excellent father......we all miss him terribly. But....he'd be proud

of us how we're moving on, the best we know how.

Thanks for thinking of us.

Donna

mom to Tim (18), (17), Nikki (14) and (9 1/2)

[Guest guest]

Bonnie,

I think Donna is doing ok--I know she has family not too

far --helping--at least emotionally. I know they are looking into a new

school for Tim. were looking at perkins, but doesn't feel she can do that by

herself being so far from home. talked about having to find a job, but

needs to get tim settled first. He is doing well, and is in the rehab

section of the hosp.

thank you for saying I bring joy--I needed that!! life has been rough

lately and I'm not feeling very joyful!

tough love has always been in force here, but he got a good dose last

night--lost his haircut--which may not seem extreme, but he's been

waiting --time alone w/ pat etc. and now because he couldn't stop hitting a

box when I asked and kept doing it and then when I got into the truck he did

it again for spite----oh......the bad words I felt like saying!

anyway, it's worsse than taking a toy away from a " regular " child.

oh, the joys of parenthood....have a good one say hello to the family for

me.

Re: hello

> ,

>

> Thanks for the update. Although your life is busy right now it is so

> wonderful with those boys. Good luck on the hormone testing for Timmy.

>

> How are things with Donna really? She and her children must be in such a

fog

> right now. Is there any update? I know you said you ran into her by

> chance. Sometimes there have been moments in my life where I don't think

things

> happened by chance. I am glad Donna got to see you. You are a person

whose

> presence brings joy.

>

> Oh, and good luck on the behavior thing. Besides all the other stuff one

of

> the most important things we did and still do with Patty is " tough love " ?

> When we say no we have to mean it. What we do we have to foolw through

with it

> though. When I said to do something or she wouldn't.... then WE wouldn't.

> Good luck. He is just as persistant as she is. It is what makes her

beautiful

> though.

>

> Bonnie

>

>

>

[Guest guest]

Donna -

I'm so glad to see you back here (even if just to drop in) and

to hear that Tim is doing so much better. Your offlist messages

to me when Sara was born meant so much to me and I think about you

and your family often. I pray that you remain strong for Tim and

your other children in the loss of Bud but still hope that you can

find a way to grieve. You have been thru so much more than any

person/family should ever go thru. Your ability to keep going truly

shows how remarkable you are.

Hugs,

Debbie

From the keyboard of Leapbaby60@...:

> Good to see you, Pat and Tim the other week at CHOP, .

> Things are settling down a bit....but then something always pops up. New -job

> search stuff, daily stuff,managing the household by myself, accepted

> into 2 colleges (her 2 top choices) and on and on......

>

> Big news! Tim is coming home from the hospital on Friday. His sisters

> are so excited.

> A bit of " normalcy " to have Tim back home. It's been 4 months since he was

> airlifted with the flu. And......here he is....back to his old self. They said

> he has met and " exceeded " all of their expectations in his recouperation and

> there is nothing more left for them to do.

> Who'd a guess....being in heart and lung failure upon admission with bleeding

> lungs that they would ever had said he exceeded their expectations. That's my

> boy!!!

>

> For the rest of life......we're all doing as well as can be expected.

> Missing my husband horribly, though. We had the most excellent marriage and he

> was a most excellent father......we all miss him terribly. But....he'd be

proud

> of us how we're moving on, the best we know how.

>

> Thanks for thinking of us.

>

> Donna

> mom to Tim (18), (17), Nikki (14) and (9 1/2)

--

+ Debbie Tropiano -- debbie@... -- http://www.icus.com/personal.html +

| Mommy to b: 8/17/1995, ^Sara^ b: 10/25/2000 d: 11/7/2000 & |

| Leah b: 10/17/2001 a: 9/26/2002 " God shows His opposition to cancer and |

| birth defects, not by eliminating them or making them happen only to bad |

| people (He can't do that), but by summoning forth friends and neighbors |

+ to ease the burden and to fill the emptiness. " -- Harold S. Kushner +

[Guest guest]

Donna,

We think of you so much and are thankful that you are even able to be up and

about getting on with anything.

Kim

> Hello Bonnie and ,

>

> Good to see you, Pat and Tim the other week at CHOP, .

> Things are settling down a bit....but then something always pops up. New -job

> search stuff, daily stuff,managing the household by myself, accepted

> into 2 colleges (her 2 top choices) and on and on......

>

> Big news! Tim is coming home from the hospital on Friday. His sisters

> are so excited.

> A bit of " normalcy " to have Tim back home. It's been 4 months since he was

> airlifted with the flu. And......here he is....back to his old self. They said

> he has met and " exceeded " all of their expectations in his recouperation and

> there is nothing more left for them to do.

> Who'd a guess....being in heart and lung failure upon admission with bleeding

> lungs that they would ever had said he exceeded their expectations. That's my

> boy!!!

>

> For the rest of life......we're all doing as well as can be expected.

> Missing my husband horribly, though. We had the most excellent marriage and he

> was a most excellent father......we all miss him terribly. But....he'd be

> proud

> of us how we're moving on, the best we know how.

>

> Thanks for thinking of us.

>

> Donna

> mom to Tim (18), (17), Nikki (14) and (9 1/2)

>

>

>

[Guest guest]

I'm glad Tim is coming home

Kay

Re: hello

> Hello Bonnie and ,

>

> Good to see you, Pat and Tim the other week at CHOP, .

> Things are settling down a bit....but then something always pops up.

New -job

> search stuff, daily stuff,managing the household by myself,

accepted

> into 2 colleges (her 2 top choices) and on and on......

>

> Big news! Tim is coming home from the hospital on Friday. His sisters

> are so excited.

> A bit of " normalcy " to have Tim back home. It's been 4 months since he was

> airlifted with the flu. And......here he is....back to his old self. They

said

> he has met and " exceeded " all of their expectations in his recouperation

and

> there is nothing more left for them to do.

> Who'd a guess....being in heart and lung failure upon admission with

bleeding

> lungs that they would ever had said he exceeded their expectations. That's

my

> boy!!!

>

> For the rest of life......we're all doing as well as can be expected.

> Missing my husband horribly, though. We had the most excellent marriage

and he

> was a most excellent father......we all miss him terribly. But....he'd be

proud

> of us how we're moving on, the best we know how.

>

> Thanks for thinking of us.

>

> Donna

> mom to Tim (18), (17), Nikki (14) and (9 1/2)

>

>

>

[Guest guest]

Donna, I'm so glad tim is coming home!!! I hope his new school works well

for you all. congrats to KElly on colleges!! another new adjustment--but

I'm sure you'll all do well, and you have some time to prepare.

Think of you often wish we lived closer---happy spring!!

hugs to all,

and the guys

Re: hello

> Hello Bonnie and ,

>

> Good to see you, Pat and Tim the other week at CHOP, .

> Things are settling down a bit....but then something always pops up.

New -job

> search stuff, daily stuff,managing the household by myself,

accepted

> into 2 colleges (her 2 top choices) and on and on......

>

> Big news! Tim is coming home from the hospital on Friday. His sisters

> are so excited.

> A bit of " normalcy " to have Tim back home. It's been 4 months since he was

> airlifted with the flu. And......here he is....back to his old self. They

said

> he has met and " exceeded " all of their expectations in his recouperation

and

> there is nothing more left for them to do.

> Who'd a guess....being in heart and lung failure upon admission with

bleeding

> lungs that they would ever had said he exceeded their expectations. That's

my

> boy!!!

>

> For the rest of life......we're all doing as well as can be expected.

> Missing my husband horribly, though. We had the most excellent marriage

and he

> was a most excellent father......we all miss him terribly. But....he'd be

proud

> of us how we're moving on, the best we know how.

>

> Thanks for thinking of us.

>

> Donna

> mom to Tim (18), (17), Nikki (14) and (9 1/2)

>

>

>

[Guest guest]

Donna,

It is so nice to hear from you. How wonderful you have Tim back home. It is

amazing what he had to go through, what you all have been through. There are

no words of sympathy or comfort I could ever offer you. Yet I am sure your

husband would be very proud of how you are dealing with things. It must be

difficult none the less.

So got accepted into two colleges? Congratulations! Is she going

to be anywhere here in the Northeast? She is a wonderful young woman with

much to offer this world. All of your children are wonderful. And you're

looking for a new job too! Good luck. I wish you all the best.

Thanks for coming back to the list. We missed you.

Bonnie

[Guest guest]

Debbie, Bonnie, , Pam ,Kim and Kay -

Thank you all so very much for your kind words and support.

Tim has been home for just under a week now and hasn't missed a beat. Truely

truely amazing....3 1/2 months in the hospital, in a bed and besides the

obvious need of a haircut....one might never know what he's been through. So,

presently, I wait.....waiting for a school placement so we can all get on with

life

here. Wait for my oldest daughter to start college in the Fall (going as a

pre-med major....unbelievable) and wait for life to return to " normal " .

I have not worked outside of my home for 18 years and I am currently getting

my resume together to go job hunting. Hopefully this will all come together

with perfect timing...yea, right. Nothing is ever that easy.

....and who would have guessed, some 4-5 months ago when life was so perfect

that I would be in this situation.........not me.

But life goes on and we all will be ok........ eventually.

Thank you again for keeping us in your prayers. It means a great deal to all

of us.

Donna

mom to Tim (18), (17), Nikki (14) and (91/2)