Cheryl

[Guest guest]

Hi Cheryl,

Well the Paxil and Zoloft were not good for Brook. We started them last

December when Brook was diagnosed with ASD. First we started with paxil, we

noticed that it was causing him to throw everything in sight and he was

getting pretty hyper and his appetite decreased. He was already a very poor

eater. He became fixated on one audio and one video tape and watched them

over and over which he doesn't do. And he won't respond to us telling him " No

throwing, " which he usually does.

We started Brook on Zoloft after the paxil at 25 mg a day for over 2 weeks

which didn't seem to do anything. Then we raised it to 50 mg and suddenly he

became aggressive, which only does when he is very upset. He was hitting me

and pinching for no reason even as I was taking him to his bath which he

loves. He did the same to his Dad and big brother. So we took him off the

zoloft. His Dr. did not believe that the zoloft caused the aggression and she

wanted us to try it again. So we did and he seemed better, but it did

nothing to help with any of his problems. Still spraying water and throwing

etc. Originally his Dr had said that he wasn't a candidate for Risperdal

because his behavior problems weren't serious enough. But when she heard how

he was hitting and pinching while on the zoloft then she changed her mind and

decided he should try the Risperdal.

Brook has been on his seizure med since he was 10 years old this time

around, that's when his seizures came back again. And then when he just

turned 12 last Feb we added the Risperdal. We started very slowly and raised

it very slowly too. Now he is on .5mg three time a day. Unfortunately we

keep forgetting to five him his afternoon dose, since he usually gets that

one a school and we aren't used to it. I'm glad to meet another little one

with a water obsession. Brook can't turn on the water in the shower/bath at

our house because we took the handle off and it's tricky to turn it on.

Otherwise he would and has at my mom's house got in the tub fully clothed and

turned the water on. What do you mean by she can't pull out the bathroom tap?

I thought she was filling the tub and showering on her own or are you turning

it on for her? For us the more water Brook gets the more he wants. So we

limit him to one bath a day, we fill the tub and turn it off and then he gets

in. We have to put wooden dowels in the shower door track so that he can't

open the doors and dump out all the water. Last night he found some maple

syrup in a small pitcher in the refrigerator and dumped it out all over his

bed and clothes. Today he found a juice box and spilled apple juice all

around the floor. So he is still getting into water type activities one way

or another. But we really need to give him his PM dose, otherwise he is only

getting 2/3 of his dose. I hope you can get Allie's seizures under control

and then try something for her behaviors.

Marisa

Mom to Miles 15, Brook 12 and Genevieve 4

[Guest guest]

Hi Marisa,

The tap Angel can't turn on is the one at the sink in the bathroom.

She can turn on the shower/tub with ease. We all run fast when we

hear it turn on as she doesn't check for temp before climbing in.

She does undress though. Which is great.

Sounds like Brook has had quite the trial with different meds. Sure

makes you glad for risperidone.

Angel loves to pour things too. she gets the juice out of the fridge

along with about 5 -10 cups and pours them all over the place, can't

pour worth beans so it's everywhere. That's when I realize she needs

to get into the bath and do it there with water instead. She could

sit there forever watching the water as it pours out. And she does

the video thing to death. Right now it is Madeline and she watches

the same clip over and over, rewinding so she can see it as it moves

backwards, yelling at anyone who tries to rewind it normally, etc.

I can't wait to talk to our ped and psych to see if risperidone is an

option when given with seizure meds.

Take care,

Cheryl

mom to Angel and Allie

> Hi Cheryl,

> Well the Paxil and Zoloft were not good for Brook. We started

them last

> December when Brook was diagnosed with ASD. First we started with

paxil, we

> noticed that it was causing him to throw everything in sight and he

was

> getting pretty hyper and his appetite decreased. He was already a

very poor

> eater. He became fixated on one audio and one video tape and

watched them

> over and over which he doesn't do. And he won't respond to us

telling him " No

> throwing, " which he usually does.

> We started Brook on Zoloft after the paxil at 25 mg a day for over

2 weeks

> which didn't seem to do anything. Then we raised it to 50 mg and

suddenly he

> became aggressive, which only does when he is very upset. He was

hitting me

> and pinching for no reason even as I was taking him to his bath

which he

> loves. He did the same to his Dad and big brother. So we took him

off the

> zoloft. His Dr. did not believe that the zoloft caused the

aggression and she

> wanted us to try it again. So we did and he seemed better, but it

did

> nothing to help with any of his problems. Still spraying water and

throwing

> etc. Originally his Dr had said that he wasn't a candidate for

Risperdal

> because his behavior problems weren't serious enough. But when she

heard how

> he was hitting and pinching while on the zoloft then she changed

her mind and

> decided he should try the Risperdal.

> Brook has been on his seizure med since he was 10 years old this

time

> around, that's when his seizures came back again. And then when he

just

> turned 12 last Feb we added the Risperdal. We started very slowly

and raised

> it very slowly too. Now he is on .5mg three time a day.

Unfortunately we

> keep forgetting to five him his afternoon dose, since he usually

gets that

> one a school and we aren't used to it. I'm glad to meet another

little one

> with a water obsession. Brook can't turn on the water in the

shower/bath at

> our house because we took the handle off and it's tricky to turn it

on.

> Otherwise he would and has at my mom's house got in the tub fully

clothed and

> turned the water on. What do you mean by she can't pull out the

bathroom tap?

> I thought she was filling the tub and showering on her own or are

you turning

> it on for her? For us the more water Brook gets the more he wants.

So we

> limit him to one bath a day, we fill the tub and turn it off and

then he gets

> in. We have to put wooden dowels in the shower door track so that

he can't

> open the doors and dump out all the water. Last night he found

some maple

> syrup in a small pitcher in the refrigerator and dumped it out all

over his

> bed and clothes. Today he found a juice box and spilled apple juice

all

> around the floor. So he is still getting into water type

activities one way

> or another. But we really need to give him his PM dose, otherwise

he is only

> getting 2/3 of his dose. I hope you can get Allie's seizures under

control

> and then try something for her behaviors.

>

> Marisa

> Mom to Miles 15, Brook 12 and Genevieve 4

[Guest guest]

Sandy,

I can tolerate any chocolate in small doses. Just not RICH RICH

chocolate. I can eat a hersey bar typically with no problem. I don't

usually choose eat it all at once but rather savor it slowly b/c of

calories. I just share my experiences so that maybe some folks won't

be where I am, constantly struggling to maintain because I did not

change my eating patterns, which were mostly what got me up to 384

lbs. The MGB allows us to lose weight pretty much, for most of us, NO

MATTER WHAT WE EAT, and we can physically only eat but so much. With

that being said, I just want to encourage people to explore eating

healthy and low fat some before they plateau and then find themselves

gaining and become angry and frustrated at suddenly having to " diet " .

I don't really call myself dieting, I choose to consider myself

eating healthier. Do I eat chocolate and desert. You betcha, I won't

deprive myself 24/7, but do I eat a salad with FF dressing,

ABSOLUTELY. Do I eat low fat when I cook, most of the time. But if I

want to go out and eat at Applebee's and have those onion straws or a

high fat appetizer, yes I do. HOWEVER, I then revert the next day to

low fat. And I can do this because my weight loss through the MGB

gave me back my willpower, my self-esteem and a desire to be

healthier and stay happy.

I am " preaching " only because I'd love to see some folks realize this

before they plateau and start thinking they wish they could have a

revision, or worst yet, be stuck with still more weight to lose and

absolutely feel they cannot do it on their own.

Cheryl

[Guest guest]

> I guess I am lucky because I can eat and drink at the same time

> during a meal and have no problems. The first 2 mos I could not

do that but

> I can now.

>

> It's amazing how unique everyone's bodies are.

>

> Hang in there & keep fighting the chocolate cravings!

>

> Sandy Bangle

> Hays, Kansas

> 785-625-8400

Sandy-

We can all drink and eat at the same time - but we are not supposed

to. Just because we CAN do something does not mean that it is good

for us. We are not supposed to drink while we eat because it will

push the food through faster and we will be able to consume more

food. This will not be to your advantage. There is no good reason

to make yourself able to eat more. The whole purpose of the MGB is

to limit our intake.

Margaret in St. Louis

MGB 12/13/00

250 / 160

[Guest guest]

ohhhhh margaret the MGB guru!!! i AGREE I AGREE!!!!!! i don't know

why so many people try so hard to do things like they did before....

the way we did things before MGB is not what we need, now.... the

point is to do things in a way that will be beneficial to the success

of our MGB. I had a gastro guy to tell me that food is not digested

properly or absorbed properly if you drink with your meals....that

you are only diluting the digestive enzymes you need for proper and

thorough digestion. i never thought about that before , but it makes

sense!

xoxoxoxo

cathy s in va.

>

> Sandy-

> We can all drink and eat at the same time - but we are not supposed

> to. Just because we CAN do something does not mean that it is good

> for us. We are not supposed to drink while we eat because it will

> push the food through faster and we will be able to consume more

> food. This will not be to your advantage. There is no good reason

> to make yourself able to eat more. The whole purpose of the MGB is

> to limit our intake.

>

> Margaret in St. Louis

> MGB 12/13/00

> 250 / 160

[Guest guest]

Is that correct? We're not SUPPOSE to eat and drink at the same time. I

thought it was just if you were having problems with vomiting, indigestion,

etc... Gosh, if you're right, maybe that will help me lose more. I've been

losing kind of slowly. Thanks, Margaret.

11/13/02

262 / 233

Re: cheryl

>

> > I guess I am lucky because I can eat and drink at the same time

> > during a meal and have no problems. The first 2 mos I could not

> do that but

> > I can now.

> >

> > It's amazing how unique everyone's bodies are.

> >

> > Hang in there & keep fighting the chocolate cravings!

> >

> > Sandy Bangle

> > Hays, Kansas

> > 785-625-8400

>

> Sandy-

> We can all drink and eat at the same time - but we are not supposed

> to. Just because we CAN do something does not mean that it is good

> for us. We are not supposed to drink while we eat because it will

> push the food through faster and we will be able to consume more

> food. This will not be to your advantage. There is no good reason

> to make yourself able to eat more. The whole purpose of the MGB is

> to limit our intake.

>

> Margaret in St. Louis

> MGB 12/13/00

> 250 / 160

>

>

>

>

[Guest guest]

Margaret,

So what is the guidelines on drinking? Sometimes I eat and get so

thirsty. I knew not to drink and have been doing pretty well, but I want

to do better. Would you let me know how long before eating and how long

after? If I have ice chips around and am eating and get so thirsty I

can't stand it that helps a lot.

Thanks so much

Debbie

________________________________________________________________

Sign Up for Juno Platinum Internet Access Today

Only $9.95 per month!

Visit www.juno.com

[Guest guest]

Hi Cheryl,

What's your son's name? I'm praying for him and you.

Love, Liz

---

On Wed, 26 Feb 2003 14:11:02 +0000 jcbl@... writes:

> Thanks,he is on glevac( chemo in a pill form) which is holding it at

> bay but

> not getting rid of it. the doctor is still wanting to go with a

> transplant.

> We are waiting for is 2 month checkup to see. He is only 26 and we

> are not

> for sure if he can stay on glevac for the rest of his life. The med.

> causes

> severe side effects. He is very healthy looking by looking at him

> you would

> not know he is sick. Cheryl

>

>

________________________________________________________________

Sign Up for Juno Platinum Internet Access Today

Only $9.95 per month!

Visit www.juno.com

[Guest guest]

His name is . We are taking him on a cruise Mar 14 The doctor

recommendered we do something in case he has to have a transplant because he

might be down for about a year. Well anyway i am back to doing life lift

after a year of being severly depressed and trying pills. I cannot believe i

ever stopped these exercises. Since Saturday i have already lost 2 inches off

my abs. and i am feeling much better.

> Hi Cheryl,

>

> What's your son's name? I'm praying for him and you.

>

> Love, Liz

> ---

> On Wed, 26 Feb 2003 14:11:02 +0000 jcbl@... writes:

> > Thanks,he is on glevac( chemo in a pill form) which is holding it at

> > bay but

> > not getting rid of it. the doctor is still wanting to go with a

> > transplant.

> > We are waiting for is 2 month checkup to see. He is only 26 and we

> > are not

> > for sure if he can stay on glevac for the rest of his life. The med.

> > causes

> > severe side effects. He is very healthy looking by looking at him

> > you would

> > not know he is sick. Cheryl

> >

> >

>

> ________________________________________________________________

> Sign Up for Juno Platinum Internet Access Today

> Only $9.95 per month!

> Visit www.juno.com

>

> What can changing the way you breathe do for you? Everything!

> See why tens of thousands agree, Life Lift is the best!

http://www.oxygenzoo.com

>

>

[Guest guest]

That's great, Cheryl!

Smiles,

Darlene

Re: Re: Cheryl

> His name is . We are taking him on a cruise Mar 14 The doctor

> recommendered we do something in case he has to have a transplant because

he

> might be down for about a year. Well anyway i am back to doing life lift

> after a year of being severly depressed and trying pills. I cannot believe

i

> ever stopped these exercises. Since Saturday i have already lost 2 inches

off

> my abs. and i am feeling much better.

> > Hi Cheryl,

> >

> > What's your son's name? I'm praying for him and you.

> >

> > Love, Liz

> >

[Guest guest]

Wow Cheryl, 2 " since Sat.? That is wonderful. LL is such a great stress

buster and can make you feel so much better.

God Bless,

Love,

Click here:

http://www.lifelift.net/cgi-bin/affiliates/clickthru.cgi?id=rdclem

To learn how Lifelift has helped me to lose weight and gain good health

Re: Re: Cheryl

> His name is . We are taking him on a cruise Mar 14 The doctor

> recommendered we do something in case he has to have a transplant because

he

> might be down for about a year. Well anyway i am back to doing life lift

> after a year of being severly depressed and trying pills. I cannot believe

i

> ever stopped these exercises. Since Saturday i have already lost 2 inches

off

> my abs. and i am feeling much better.

> > Hi Cheryl,

> >

> > What's your son's name? I'm praying for him and you.

> >

> > Love, Liz

> > ---

> > On Wed, 26 Feb 2003 14:11:02 +0000 jcbl@... writes:

> > > Thanks,he is on glevac( chemo in a pill form) which is holding it at

> > > bay but

> > > not getting rid of it. the doctor is still wanting to go with a

> > > transplant.

> > > We are waiting for is 2 month checkup to see. He is only 26 and we

> > > are not

> > > for sure if he can stay on glevac for the rest of his life. The med.

> > > causes

> > > severe side effects. He is very healthy looking by looking at him

> > > you would

> > > not know he is sick. Cheryl

> > >

> > >

> >

> > ________________________________________________________________

> > Sign Up for Juno Platinum Internet Access Today

> > Only $9.95 per month!

> > Visit www.juno.com

> >

> > What can changing the way you breathe do for you? Everything!

> > See why tens of thousands agree, Life Lift is the best!

http://www.oxygenzoo.com

> >

> >

[Guest guest]

Cheryl, I noticed a hint of need in your post to . Is there something

I can pray about with you? I don't mean to pry, so forgive me if I am.

Please email me personally if you perfer. mamamwapo@...

In His hands,

Kathy in NM

>From: " Cheryl W. Klein " <cherylwklein@...>

>Reply-

>

>Subject: Re: 4 month update

>Date: Thu, 06 Mar 2003 10:25:37 -0000

>

> don't you feel great??? I remember so well how wonderful it

>felt to get below 300. It was indeed a day of celebration. However,

>I have since begun to learn that life is short, no one is promised

>tomorrow and we should CELEBRATE in the moment. ANYWAY, congrats on

>the weight loss and the improved health!! I know you are thrilled.

>

>Cheryl

>-214

>MGB 6/17/99

>

>

> > Hello Gang.

> > I just wanted to post my 4 month update.

> > I am doing really well.

> > I am continuing with my vitamins and supplements faithfully and I

>have started exercising (need to get more faithful with this!).

> > I still don't crave the foods that got me into all this mess in

>the first place----I have found some wonderful and healthy

>substitutions.

> > I have lost 82 lbs. I still have a long way to go, but I feel so

>hopeful.

> > I get wonderful comments from family, friends and acquaintances

>and I even have had some cute guys look (it's nice, but I'm deeply

>in love with my man---who, btw, is really taking notice now, too).

> > I will forever be thankful to Dr. R and all of you who spoke the

>truth.

> > I am forever grateful for my faith in God.

> > Best wishes to all.

> >

> > Nov. 6

> > 376/294

> >

> >

> >

> >

[Guest guest]

Drlene, we are waiting for his last blood work to come back, if if there has

been no change from last time they are going to check his brother and sister

for a bone marrow match. If they are not a perfect match he will continue his

medication for longer intill he has to have a transplant. HE is 26 and his

brother is 18 and sister 16. He is a really angry and depressed person. He

having a really rough tome with is emotions. Cheryl

> Cheryl,

>

> I think I remember your name from some time ago. Welcome back! I'm so

> sorry to hear about your child with cancer.

> How are things now?

>

> LifeLift is a perfect choice since it is so nurturing. Give yourself a big

> hug from us!

>

> I remember Callanetics from a long time ago but don't know much about Windor

> Pilates. I have done a few of the Callanetics moves with LifeLift breathing

> and find them very challenging. Liz might be able to give you more info

> about the other program.

>

> Hugs,

> Darlene

>

> exercises options

>

>

> > After suffering quite alot this year with a child with cancer. I am ready

> to

> > get going again. I am going to Life Lift. But also would you recommend the

> > callentics or the windsor pilates. In Nov. we are going to Disney world

> so i

> > have a goal. Cheryl

>

>

>

> What can changing the way you breathe do for you? Everything!

> See why tens of thousands agree, Life Lift is the best!

http://www.oxygenzoo.com

>

>

[Guest guest]

Hi Cheryl,

This must be so scary for him and you. I'm still praying for him.

Take care!!!!

Hugs to your family!!!

Love, Liz

---

On Fri, 20 Jun 2003 02:48:02 +0000 jcbl@... writes:

> Drlene, we are waiting for his last blood work to come back, if if

> there has

> been no change from last time they are going to check his brother

> and sister

> for a bone marrow match. If they are not a perfect match he will

> continue his

> medication for longer intill he has to have a transplant. HE is

> 26 and his

> brother is 18 and sister 16. He is a really angry and depressed

> person. He

> having a really rough tome with is emotions. Cheryl

> > Cheryl,

[Guest guest]

Cheryl,

Thanks for letting us pray with you. I know this must be hard to handle for

the whole family.

I think you've made a good choice to start LifeLift again. You are taking

care of yourself, which you need to do first in order to take care of anyone

else. :-)

Hugs,

Darlene

Re: Cheryl

> Drlene, we are waiting for his last blood work to come back, if if there

has

> been no change from last time they are going to check his brother and

sister

> for a bone marrow match. If they are not a perfect match he will continue

his

> medication for longer intill he has to have a transplant. HE is 26 and

his

> brother is 18 and sister 16. He is a really angry and depressed person.

He

> having a really rough tome with is emotions. Cheryl

> > Cheryl,

> >

> > I think I remember your name from some time ago. Welcome back! I'm so

> > sorry to hear about your child with cancer.

> > How are things now?

> >

> > LifeLift is a perfect choice since it is so nurturing. Give yourself a

big

> > hug from us!

[Guest guest]

THanks . I really appreciate your suggestions. I don't live

in the same town as my brother but am only 45 mins away which is

great. I want to do some fundraising for them. It sounds like a few

of us will work on creating a benefit concert for their daughter

Jade. She has a twin sister Amber at home and two older brothers as

well. I think ALL is a huge test on a marriage as well as being

majorly stressful. I am hoping to come to the Orillia conference

this coming October. I am working with a top behavior consulting

firm on co-facilitating workshops at various conferences. We are

using Angel and Allie as the " stars " of our workshops and will use

video tapes along with examples of how the strategies have worked

with them, etc. I will share from the parent perspective while the

doctor will speak from his vast experience and knowledge on

functional assessments and postive behavior supports.

Allie used to have seizures when we first adopted her at 2.5years,

they were drop seizures. Then they stopped after a few months. then

when she was in grade 6 she started having absence seizures. Then

last year she began to have complex partial as well. Now she has the

whole gammit of them. I sure do love her new med though, it's just

great. She isn't a raging mess right now. And she isn't in a major

panic. not sure if the lack of school is a help or if its just the

med but sure do like having her calmer.

I wish I had some ideas for you on the masturbating in public thing

but it differs with each child and what tools may help them to

understand things. If you learn any tricks please share them.

The BC government started giving families of kids ages 6 to 18 six

thou a year to create a program but in truth it's not enought to pay

the behavior consultants never mind the therapists. So I use my

respite as therapy time. I have the respite worker work hourly

rather than take the kids overnight and we ask them to work on our

program goals during that time. When I work on the farm in the

summer I have the supported childcare worker work on the goals as

well. Angel's classroom aide has been trained by our behavior

consulting team so she is able to work on therapy goals that are set

out in the intensive program during school hours. It's been a great

creative solution to a lack of funding issue.

It's great to hear that things are looking up for you guys now that

the risperidone is kicking in. It sounds like it's been a really

tough year.

Take care,

cheryl

> So nice to hear from you , Cheryl, my fellow Canadian. Waterloo is

about a

> 1 1/2 hr. drive from Toronto. I grew up in Toronto & have a lot of

friends

> there. We're very lucky to be having Joan speak at the CDSS

conference in

> May, 2005 here in Waterloo.

>

> Sorry to hear about the troubles you've been having with your 15

yr. old

> daughter. I forget her name. I didn't realize that it's fairly

common for

> seizures to hit in the teenage yrs. had myoclonic

seizures or

> infantile spasms as an infant, but she out grew them when she was

2. I

> suppose we're at higher risk for them returning. Yet another thing

to worry

> about!

>

> Steph had leukemia when she was 6 & was on treatment for 3 yrs.

I'm very

> sorry to hear about your neice. What is her name? (I like to use

people's

> names when I pray for them!). I think the best thing you can do

for your

> brother & SIL is to be there for them to talk if they need to. If

they have

> other children you could babysit while they're at the hospital.

Taking them

> a meal once in a while (frozen lasagna is good, if you don't have

time to

> cook.) You could also offer to do a few loads of laundry or take

some

> shirts to a shirt laundering place (if your brother wears dress

shirts for

> his job.) These suggestions are all assuming you live in the same

city. Do

> I recall that you live out in the country (rural area)? Are you

near

> Vancouver? Anyway, it's a very stressful time for your brother &

his

> family. Let them know (if they don't already know) that the

success rate

> for childhood leukemia is very high, so to never give up hope. I

will

> remember them in my prayers.

>

> It's wonderful to hear about how well Angel is doing. ABA has

been really

> helpful for a lot of kids. I heard just this week that the Ontario

> government has approved funding for ABA to be continued for 6 - 12

yr. olds.

> This is great news!

>

> I'm afraid I really don't have a lot of advice to offer people when

it comes

> to the trials of the teenage years. As I said to Irma, no amount of

> research or prior knowledge could have prepared us for the intense

reaction

> Steph has had to her " raging hormones " . Because of her low

cognitive age

> (14 -18 months), we can't teach her the difference between private

& public,

> etc., so we just have to be very vigilant about watching her at all

times &

> just take one day at a time. We can usually re-direct her to more

> appropriate activities such as music or cause & effect toys. We

got a 2nd

> hand Tickle Me Elmo which she just loves!

>

> It really was nice to hear from you.

>

> Take care,

>

[Guest guest]

In a message dated 3/15/2005 1:47:18 PM Pacific Standard Time,

gartland.m@... writes:

Where were your son's surgeries done? How is he

tolerating his CVID treatment? What has his course

been???

Hi Cheryl,

My son had his Blaylock and his repair done at Valley Children's Hospital

in Fresno, CA. I chose this over LA Children's because of the surgeon--Dr.

Leonardo who was brilliant. When Bri had his Pulmonary Valve

transplant, it was done where we live now, in Portland, OR. The surgeon is very

well

known and has manufactured two heart valves for use. Dr. Starr performed the

first ever successful valve transplant. He is now 77 years old and going

strong. I think what I think of the most when I look back is that we were in

the

right place at the right time. Each time Bri needed open heart, we had one of

the best surgeons for that particular surgery. Believe me, it shows, as he is

the energizer bunny.

was chronically sick for years--mostly ENT infections. He did have

Pneumonia's when he was in school, then in first grade, he became too ill to

attend. He has never been hospitalized because of his infections but his

quality of life was becoming awful!! This winter, right before starting IVIG,

was

the worst I've ever seen. He starting getting strep and just didn't stop, it

was almost constant rather than chronic. He would have strep with either

double ear infection or sinus or sometimes all three.

He took lots and lots of antibiotics for years because his Ped was

convinced he had an IgA deficiency which cannot be treated with IVIG. I finally

had

enough and found an Immuno myself. Sure enough, all of these years, Bri could

have been treated. So, we have an Immuno and a new Ped as well.

If your daughter needs IVIG, it can be a scary thought--at least it was for

me. But needed a better quality of life. He needs to go back to

school which should be happening this summer!!!

Sandi, Mom to , age 12. CVID, Tetrology of Fallot, Pulmonary valve

transplant (2003), Mitral valve stenosis, COPD, asthma, Carnitine deficiency,

GERD,

suspected Velocardiofacial syndrome.

[Guest guest]

In a message dated 3/15/2005 1:47:18 PM Pacific Standard Time,

gartland.m@... writes:

Where were your son's surgeries done? How is he

tolerating his CVID treatment? What has his course

been???

Hi Cheryl,

My son had his Blaylock and his repair done at Valley Children's Hospital

in Fresno, CA. I chose this over LA Children's because of the surgeon--Dr.

Leonardo who was brilliant. When Bri had his Pulmonary Valve

transplant, it was done where we live now, in Portland, OR. The surgeon is very

well

known and has manufactured two heart valves for use. Dr. Starr performed the

first ever successful valve transplant. He is now 77 years old and going

strong. I think what I think of the most when I look back is that we were in

the

right place at the right time. Each time Bri needed open heart, we had one of

the best surgeons for that particular surgery. Believe me, it shows, as he is

the energizer bunny.

was chronically sick for years--mostly ENT infections. He did have

Pneumonia's when he was in school, then in first grade, he became too ill to

attend. He has never been hospitalized because of his infections but his

quality of life was becoming awful!! This winter, right before starting IVIG,

was

the worst I've ever seen. He starting getting strep and just didn't stop, it

was almost constant rather than chronic. He would have strep with either

double ear infection or sinus or sometimes all three.

He took lots and lots of antibiotics for years because his Ped was

convinced he had an IgA deficiency which cannot be treated with IVIG. I finally

had

enough and found an Immuno myself. Sure enough, all of these years, Bri could

have been treated. So, we have an Immuno and a new Ped as well.

If your daughter needs IVIG, it can be a scary thought--at least it was for

me. But needed a better quality of life. He needs to go back to

school which should be happening this summer!!!

Sandi, Mom to , age 12. CVID, Tetrology of Fallot, Pulmonary valve

transplant (2003), Mitral valve stenosis, COPD, asthma, Carnitine deficiency,

GERD,

suspected Velocardiofacial syndrome.

[Guest guest]

In a message dated 3/15/2005 1:47:18 PM Pacific Standard Time,

gartland.m@... writes:

How is he

tolerating his CVID treatment?

Cheryl,

Sorry, I forgot this part. Bri got sick with the first two treatments, but

with the third one he was fine!! We just needed to slow the rate of

transfusion down.

Sandi

[Guest guest]

In a message dated 3/15/2005 1:47:18 PM Pacific Standard Time,

gartland.m@... writes:

How is he

tolerating his CVID treatment?

Cheryl,

Sorry, I forgot this part. Bri got sick with the first two treatments, but

with the third one he was fine!! We just needed to slow the rate of

transfusion down.

Sandi

[Guest guest]

Sandi,

It is nice to hear from other heart mom's! Aly is

also doing well heart wise. She had her firts 3

surgeries at Mayo Clinic and her 4th(most likely her

5th as well) were done at Children's of

Wisconsin(where we live). Aly will have her

conduit,valve and left PA graft changed eventually,

probably in the next couple years.

Where were your son's surgeries done? How is he

tolerating his CVID treatment? What has his course

been???

Nice to meet you, Cheryl

[Guest guest]

Sandi,

It is nice to hear from other heart mom's! Aly is

also doing well heart wise. She had her firts 3

surgeries at Mayo Clinic and her 4th(most likely her

5th as well) were done at Children's of

Wisconsin(where we live). Aly will have her

conduit,valve and left PA graft changed eventually,

probably in the next couple years.

Where were your son's surgeries done? How is he

tolerating his CVID treatment? What has his course

been???

Nice to meet you, Cheryl

[Guest guest]

Cheryl, I have had my band since Feb. 23. I have felt restriction until recently. I have felt the tightness in my chest and the pain that it can cause. It feels like major heart burn for a few minutes but then goes away. I do NOT keep eating once that feeling subsides. I am very GLAD to say I have never PB'd, Slimed, or had any other adverse reactions to eating food other than the tightness. I am learning how to manage and it gets easier each day. I hope that I will feel the same way after my first fill...which is Saturday! Don't sweat it....everyone is different. I think we just hear more on the boards about people having difficulties because this is where they can get answers when they have problems. There are plenty of us out here though that don't experience the same problems. Oh, and my incisions healed perfectly....no leaking, no redness, soreness, etc. NO

PROBLEMS AT ALL!! YOU will never regret making the decision to have a lapband! It is the greatest thing I have ever done for myself. Jenni Curriemamalibby8 <mamalibby8@...> wrote: Uh Oh . . . now I'm scared. I'm not sure I want to do this. I have a very weak stomach! Six kids and a dog and my husband is the one that has always had to clean up that kind of stuff (I could handle diapers but nothing else, still even have a difficult time with nose "stuff" - not to mention the other).Is there a way to avoid a "PB" without having to experience one? Like just eat so much food and stop? Will the doc's staff go over all this with

us and ways to AVOID it? My surgery is next Thursday (18th) Cheryl in Little Elm> Good advice Dana! Also I think it is important to stress to know when your soft stop signal is. For me, I sigh. Or sometimes one little hiccup and that tells me I am done and I need to stop. IF I take one more bite, I am in trouble. If my nose waters or I sneeze, I have over done it. You have got to recognize your soft stop before you end up with a hard stop (A PB, or stuck feeling). If you are PB-ing on a daily basis, you are not recognizing your soft stop. Even on a weekly basis. It took me 2 pb's to understand my bodies signals. Once in a while I ignore them if I am in a hurry or not paying attention and I pay the price. It is not good to PB, it is not safe for your band or your esophagus. Tammy, it sounds like you had something severely stuck. I have never had a classic PB either. I actually have to force

myself to pb (finger down throat) and then it is a vomit, I have never had it just "burp up" - I wish. Some people are lucky that way (grin). It is a learning process, just try and recognize those signals. > > M> DOB 3/1/05> 280/171/160 -ugh I gained but am going back down> http://www.tracyslapband.com> Re: To experienced bandsters......sorry this is gross> > > Hi TammyA., Dana here, sounds like a pbing/stuck event for sure!!!> > Chicken needs to be soooo tender (like in soups) for me to even have it. I tried a little sliver

of a oven stuffer that was even cooked in a oven bag, and still heaved after only 2 bites!! Dinner was over after that! Did you feel the pain starting before you finished? Most of the time I feel like I'm getting really bloated in the chest and ribs and feel like I need to burp, but can't, that's when I have to stop eating .Then the slime comes and I either get a cup and spit it out until everything settles or go in the bathroom if I can't control it and let it go... Some days I feel like a bulemic!! Sorry you had to experience it a work, It's happened to me at work as well and it sucks!! If this was your first episode, then you are probably eating slowly when you take your time. Maybe have some soup or yogurt for the days you need to eat quickly or can't take a lunch. Welcome to the wonderful world of slime:) The band really does talk to us, some tiimes loudly:) Dana>

> -------------- Original message -------------- > From: "Tammy" <cuttinoutback@...> > OK, I had my first PB experience tonight. I know it was because I ate > too fast even though I chewed well(I was working, had to eat as fast > as I could). This was not what I expected a PB to be by what I have > read. I had a small rotisserie chicken thigh and some baked beans. > When I finished eating I went back to do my haircut and was having > pain in my chest(I have had this before) and I had a bit of slime that > I couldn't get down. I had to excuse myself to the bathroom to spit > up the slime, after I did that I

waited because I still did not feel > well then I just threw up. It felt just like throwing up, not like a > burp. My eyes watered and I was sweating and everything! Now I have > always been resistant to thro wing up even when I was sick. Do you > think that may be the reason I haven't PB'd before now and tonight was > just a really bad case? > > Tammy A> 251/233/150> DOB 2/16/06> 1st fill 3/20/06> > > > > > > > >

[Guest guest]

Just checked the photo ... like ... WOW! well done Cheryl! Bev Send instant messages to your online friends http://au.messenger.

[Guest guest]

Just checked the photo ... like ... WOW! well done Cheryl! Bev Send instant messages to your online friends http://au.messenger.