To

[Guest guest]

, That's great news that you getting to see Dr. Sutherland and so

soon!!!!!!!

You got into see him faster that you do a regular MD and not a specialist. I'll

keep you in my prayers that all goes well for you. Keep us posted.

Take Care,

Louie in WV

[Guest guest]

Dear ,

I'm glad you aren't here right now because I'd hate for you to see

me for the first time with my face taught with anger and smoke

billowing out of my ears!!!! Medical professionals like " Ms.

Judgemental " need to go back to medical school or maybe to

their mother's lap to relearn the acts of compassion and caring.

I don't know how people who feel the need to make unsympathic

and negative statements like that can be drawn into the medical

field to start with!

To get to the point, this statement really bothered me:

<<It made me feel ashamed to the fact that I am 32 and

disabled and can't work She doesn't know how hard it is

everyday not to be able to work when I would like to.>>

No one has the right to criticize you to the point that you are left

feeling ashamed and as though you are at fault for having a

disabling disease. I am so sorry this happened to you, but

maybe it was a good thing you mentioned how it made you feel

to the nurse, because it looks like she passed the word on and

that Resident was repremanded for her unqualified, negative

behavior.

Sorry, too, to hear that you are still having so much difficulty that

you're looking at having a tube put in. You've had more than your

share of problems and sometimes life is so unfair to those who

are deserving of so much better. I didn't know that you had

become type 2 diabetic and had to take insulin. I've learned to

be a real insulin hog now myself, injecting up to 6-7 times a day

now. I know it's not fun, a pain in the you know where......well,

actually not there, BUT, hahaha (no pun intended,

LOL).....somewhere else. I use my stomach or thighs for my

injections because I haven't yet mastered doing it in the arm with

only one hand. Maybe I should practice that this week, it sure

would be easier when out in the public, right?

Anyhow, girl, I'm sorry you have to go through such a bad

experience. I'm sending some prayers your way that this week is

an easier one for you and that you feel some relief soon.

With hope and prayers,

Heidi

Heidi H. Griffeth

South Carolina

SE & SW Regional Rep.

PAI, Intl.

Note: All comments or advice are personal opinion only, and

should not be substituted for professional medical consultation.

[Guest guest]

Heidi ... may I chime in to say .... you are such an angel! You emit

such inspiration and spunk to people!

And , I am also sorry to hear about what you're going through.

Sometimes it helps to know you're not alone and have people thinking

of you. My husband had his feeding tube removed last week and ate a

lean hamburger this weekend (only 1/2 of it ... the pseudocyst is

pressing on the stomach so he doesn't feel hungry and it surely

doesn't take much to fill him up). You should have seen the look of

JOY on his face --- he never thought he'd be able to eat real food

again. He took his enzymes and all was well. " Normal " people don't

understand such a milestone. I will pray you do not need a tube

again.

We're not through with this thing yet of course. Back to Pittsburgh

UPMC for an endoscopic sonogram next week to see what's up with the

pseudocysts.

He's currently on disability as well - and not ashamed by any stretch

of the imagination. He's one of the hardest working people I've ever

known and being 'limited' has been extremely difficult. But, he has

undamaged lung tissue (the sudden immense release of enzymes didn't

digest them which we thank God for every day) ... and he ate a

hamburger to boot! Look for little joys in life and relish them.

Just wanted to let you know, I'm thinking of you.

Beth

> Dear ,

>

> I'm glad you aren't here right now because I'd hate for you to see

> me for the first time with my face taught with anger and smoke

> billowing out of my ears!!!! Medical professionals like " Ms.

> Judgemental " need to go back to medical school or maybe to

> their mother's lap to relearn the acts of compassion and caring.

> I don't know how people who feel the need to make unsympathic

> and negative statements like that can be drawn into the medical

> field to start with!

>

> To get to the point, this statement really bothered me:

>

> <<It made me feel ashamed to the fact that I am 32 and

> disabled and can't work She doesn't know how hard it is

> everyday not to be able to work when I would like to.>>

>

> No one has the right to criticize you to the point that you are

left

> feeling ashamed and as though you are at fault for having a

> disabling disease. I am so sorry this happened to you, but

> maybe it was a good thing you mentioned how it made you feel

> to the nurse, because it looks like she passed the word on and

> that Resident was repremanded for her unqualified, negative

> behavior.

>

> Sorry, too, to hear that you are still having so much difficulty

that

> you're looking at having a tube put in. You've had more than your

> share of problems and sometimes life is so unfair to those who

> are deserving of so much better. I didn't know that you had

> become type 2 diabetic and had to take insulin. I've learned to

> be a real insulin hog now myself, injecting up to 6-7 times a day

> now. I know it's not fun, a pain in the you know where......well,

> actually not there, BUT, hahaha (no pun intended,

> LOL).....somewhere else. I use my stomach or thighs for my

> injections because I haven't yet mastered doing it in the arm with

> only one hand. Maybe I should practice that this week, it sure

> would be easier when out in the public, right?

>

> Anyhow, girl, I'm sorry you have to go through such a bad

> experience. I'm sending some prayers your way that this week is

> an easier one for you and that you feel some relief soon.

>

> With hope and prayers,

> Heidi

>

> Heidi H. Griffeth

> South Carolina

> SE & SW Regional Rep.

> PAI, Intl.

>

> Note: All comments or advice are personal opinion only, and

> should not be substituted for professional medical consultation.

[Guest guest]

Dear ,

You mentioned that you were having an EUS celiac block in

August and that's encouraging news. One of our members had

the block done this way, apparently it is the most effective type of

celiac block and is only done in a handful of hospitals throughout

the country. The member who had this done reported that it gave

her relief for well over a year! I hope you have the same

success.

I believe that Anita Cornell, one of our newer members, sees the

same doctor that you do at Virginia Mason. His name sounds

very familiar. As soon as she reads your post, I'm sure she'll be

in touch with you. It sounds like Virginia Mason is a forerunner

for chronic pancreatitis and pancreatic surgery. We've been

hearing more and more about this facility in the last few months.

I can relate to your concerns about the weight problems. I'm

5'-8 " and was down to 98 pounds at one point right before my

DKA. This represented a loss of over 30 pounds, and it's the

second time I've had this problem with chronic pancreatitis. I've

learned to keep piles of three different sizes of clothing in my

closet 0-1, 2-4, 4-6.....in order to adapt to my weight changes. I

have been diagnosed with severe malabsorption and have great

difficulty in gaining weight. It's taken me six months to gain 8

pounds, which still leaves me about 16 pounds short of my

" normal " weight. Fortunately I haven't been on a tube, but came

very close to it last spring. The only thing that seems to help is to

take the right amount of enzymes with all my meals and snacks.

I take 4-5 capsules of Ultrase MT 20's with each meal, that's a

large amount, as each capsule has 20,000 units lipase, 65,000

units amylase and 65,000 units protease. I also take

supplements of fish oil every day and diabetic and pancreatitis

antioxidants, vitamins and minerals, too. I find that I have to

make sure that I eat a minimum of three healthy full sized meals

each day to keep any weight on. If I skip any meals, I lose.

I hope this information has been of some help. At least you

know that you are not alone with this and many of us have been

through similar experiences. Please write again if you have any

questions.

With hope and prayers,

Heidi

Heidi H. Griffeth

South Carolina

SC & SE Regional Rep

PAI, Intl.

Note: Comments or advice are personal opinion only, and

should not be substituted for professional medical consultation.

[Guest guest]

,

How do you feel about having stents so often? My specialist told me he

wanted to do stents every month for at least a year to try to scar open

the pancreatic and bile ducts. He said that stents can't stay in any

longer than 3 weeks max also. He also said that if I didn't do this I

was setting myself up for a huge attack that would put me in the

hopsital or ICU for weeks or months. I couldn't commit to that much

surgery. I could feel the stent in me and it was weird. And since I

told him I wouldn't do it, he doesn't really want to be my doctor

anymore. Said I had to do things his way or take the highway. So I

rode on.

Well, it's been 1 1/2 years since my last surgery and stenting and so

far so good. But how do you deal with so much surgery? Do the stents

really help you in pain control? Have you got children? Obviously this

is something I still think about.

Thanks,

Sandy

Fairfield, California

dcward108 wrote:

> Bert,

>

> I asked my doctor about having a Whipple due to my pancreatic duct

> collapsing all the time, instead of just changing stents every

> couple of months, and he told me also that many people who have a

> Whipple will still, or eventually experience pain after the

> operation and later on down the track. Two GI's and a surgeon all

> concurred that a Whipple would not help my pain any, I still don't

> know why that is, but do know they wouldn't have told me that for no

> reason because if they wanted to get their knives in me, they would

> have been all for the surgery. So, I get a stent put in, 6-8 weeks

> later have it taken out, then when my duct collapses again, they go

> in and put another one in..usually 2 weeks after one has been taken

> out.

>

>

>

[Guest guest]

Sandy,

My GI told me that he was very experienced in Stent placement,

having done it for 18 years, and he is a good doctor, but he was

very slow with getting around to doing procedures on me, and when I

was being able to be home for only a couple of days at a time, I got

fed up with my appts being cancelled for " family emergencies " or

patient emergencies " or apparent double bookings and so went

elsewhere, and then being in the care of an oncologist at another

hospital for sometning completely different, I had an attack and a

GI stepped in there and put in my first stent. Unfortunately for me

I guess you could say, these 2 GI's knew each other personally, and

they had a convention and my case was brought up without my name due

to benign tumours growing on my pancreas, and causing pancreatitis

attacks all the time....So, the first GI knew that I had been seen

by another GI. Problem was that I was at other hospitals for my

tumours and would have attacks so often, that I needed treatment

then and there, and of course, he knew about them all when they

would request my medical records.

When I decided to give him another chance, he told me he would fire

me as a patient if I went and saw another GI to do what he could do.

I am sort of stuck because his GI friend has told me he won't have

me admitted when I have a bad attack, even if my bloodwork is high,

and that I should be able to cope with them at home,also, he

primarily deals with the liver, not the pancreas and there are no

other GI's who will take on my case because of the complexity of it

and don't feel they are qualified. The next nearest qualified doc is

4 hours away, so I basically have no choice.

As to the Stent placement,I have to say that yes I feel the stents

have been helping me a great deal. I've managed to be home up to 7

weeks in a row with only occasional bad pain. Then when I have an

attack, it is usually blocked. I was first told that the stent could

stay in for 3-6 months without infection, one of his patients had

one in for 10 years with no problems, but my present GI doesn't want

to keep them in any longer than 2 months for me due to risk of

infection, and I've already had one stent sucked further into my

pancreas that I was lucky they were able to get out via ERCP.

I can feel them when they're in there..There is a section of my

abdomen that has a tight feel to it constantly, and if I bend down

or lay in a certain position, I feel like I'm being poked by it.

Scar tissue for me is a problem..my body loves making scar tissue

which is one of the reasons I'm having so many problems with my duct

staying open. And surgery is out of the question because of another

hereditary illness I suffer from, everytime I've had a major

operation, I've had tumours grow at the site. So, I have no choice

really. I told my doctor, it's just a good thing I love the feeling

of being knocked out by anaesthetic *L*

I usually have a major attack where I need to be hospitalised when I

have a stent put in..taking them out doesn't bother me too much

because by then my pancreatic duct has usually dilated itself and

they don't need to aggravate it too much. But it is much more

preferable than living in a hospital and getting to go home for

a " visit " every few days.

And yes, I have a 2 year old daughter who is so glad to have her

mummy back at home for a somewhat decent length of time. But, she

has been scarred emotionally also by all of this. I can't go to any

doctor's office, or even a chiropractic clinic or acupuncturist

without her crying, pulling for me to leave, and everything else she

feels she needs to do to protest us being there. So now I try to

make all my appointments for when my husband is able to look after

her. That's when I am thankful that he works evening shift.

Sorry for such a long email. You can email me personally if you

wish, I don't mind even by phone *L*

[Guest guest]

wrote:

> When I decided to give him another chance, he told me he

would fire me as a patient if I went and saw another GI to do

what he could do. I am sort of stuck because his GI friend has

told me he won't have me admitted when I have a bad attack,

even if my bloodwork is high, and that I should be able to cope

with them at home,also, he primarily deals with the liver, not the

pancreas and there are no other GI's who will take on my case

because of the complexity of it and don't feel they are qualified.

The next nearest qualified doc is 4 hours away, so I basically

have no choice.

Dear ,

I must say that what you reveal in this paragraph alone just tears

me up. It upsets me that this doctor should be able to exert so

much control over your treatment. I just hope you can be content

with this and that he will do the best for you.

With hope and prayers,

Heidi

Heidi H. Griffeth

South Carolina

SC and SE Regional Representative

PAI, Intl.

Note: All comments or advice are personal opinion only, and

should not be substituted for professional medical consultation.

[Guest guest]

> Please tell me what facility to you go to for treatment of you cp?

I also live in SC; and go to MUSC, that is where I work as well so

it is convenient.

,

Bluffton is less than two hours south of you, depending on where

you live in ton. Oh, I wish I still lived there, I was there

living in Summerville and Goose Creek from '77 to '86 and just

loved it! Where I am now is prettier, better for us, etc., but the

medical facilities are very limited.

For the first year and a half of my medical treatment for chronic

pancreatitis I went to Hilton Head Regional Medical Center. It is

a Tenent (sp?) facility. My GI doctor at the time was affiliated with

this hospital. I have never been hospitalized there for any

pancreatitis issues. I was there as an out patient for my biopsy

and CT-guided fine needle aspiration and pseudocyst drainage,

as well as my colonoscopy and upper endoscopy. The first ten

of my CT-scans were done there, also.

Then I was hospitalized there in March 2003 with diabetic

ketoacidosis. I was in ICU, and this is when I went through

pancreas burn-out and became a type 1 brittle diabetic. My GI

had failed to recognize and treat me for the onset of DKA, and I

immediately stopped treatment by him.

Since my DKA I have been seeing a doctor in Savannah, Ga. who

specializes in Gastroenterology and Internal Medicine. I'm very

happy with his thoroughness and his treatment of me so far.

He's affiliated with St. ph's-Chandler Hospital in Savannah.

My only treatment there has been as an out patient, for

ultrasounds, CT-scans and an MRCP. Judging by the way their

radiologist misread my films twice, missing my pseudocyst(s), I

don't have much, if any, confidence in their radiology department,

and of course, don't have any personal experience with the

hospital facilities as a patient....yet. I don't plan to, either!

My husband and I have always agreed that if any planned

surgery or invasive procedures were necessary I would

automatically be headed for ton and the MUSC

Gastroenterology Department. I probably should be seeing Dr.'s

Hawes or up there now, but I'm content with my

Savannah doctor for the time being, and do find even the two

hour round trip drive for an appointment time consuming

enough....an appointment seems to end up using up half a day,

and of course, for narcotics refills, just a trip to personally pick up

a script consumes half a day, too.

My daughter lives on Island and I get up there several

times each year. Oh, and although this is supposed to be a

secret, (I know you guys will never tell....hahaha, and I know she

doesn't read this MB), she's going to be engaged within the next

few weeks!!!!! As soon as the ring gets finished! We will be

having her wedding up there within the next year, so I know I'll be

up there a whole lot more.

I would love to meet you and talk about our mutual medical

problems. Another PAI member, , lives West , and

she and I have met and email often. We could set up a Coastal

SC Chapter for the PAI. Or we could just meet each other, and I

could discuss with you both my " hopes " of setting up a chapter

for that area?

I look forward to hearing back from you. You can write to me off

line anytime, too.

With hope and prayers,

Heidi

Heidi H. Griffeth

hhessgriffeth@...

South Carolina

SC and SE Regional Representative

PAI, Intl.

Note: All comments or advice are personal opinion only, and

should not be substituted for professional medical consultation.

[Guest guest]

,

I know you directed your email to Heidi but I am also from SC and I go to

MUSC. I live in Sumter which is an hour and half drive to ton. When

we found my pancreatitis, I was living in ton and when I moved back

home with my mom the hospital here didn't have a pancreatitis specialist.

They do now but they really don't want to mess with me because I am Dr.

Hawes patient. So I take the trip because I love Dr. Hawes and he listens

to my problems. You said you work at MUSC? I will be down there on the

20th for the doctor to see how I am doing with my feeding tube. Maybe we

can meet? Let me know. It would be great to meet you and if you need to

talk you can always email me.

> Please tell me what facility to you go to for treatment of you cp?

I also live in SC; and go to MUSC, that is where I work as well so

it is convenient.

---

Outgoing mail is certified Virus Free.

Checked by AVG anti-virus system (http://www.grisoft.com).

Version: 6.0.524 / Virus Database: 321 - Release Date: 10/6/03

[Guest guest]

,

I used to get UTI's as a kid a lot. I don't know what changed to stop

them, but I used to get them all the time. However, I didn't know that

Cranberry juice can stop them. Thanks for that little tidbit. I'll start

looking for the pills as I am not fond of Cranberry juice. Do you know

why cranberries stop UTI's? Just curious.

Kimber

--

Kimber

Vallejo, CA

hominid2@...

Note: All advice given is personal opinion, not equal to that of a licensed

physician or health care professional.

[Guest guest]

,

So sorry that you have had to see your own objectivity fly out the

window. Your surgery sounds like really major stuff, and I'm not

at all surprised that you're in rough shape. I'm so sorry. Just try

to take it really slow and easy and don't overdo on anything!

is the one I'm interested in. He has a reputation

that precedes him, and I've had others who speak very highly of

him. I'm going to mention him to my GI today at the appointment.

I may need to take you up on your offer to put in a good word. I'll

let you know later.

Take good care of yourself.

With hope and prayers,

Heidi

Heidi H. Griffeth

South Carolina

SC & SE Regional Rep.

PAI, Intl.

Note: All comments or advice are personal opinion only, and

should not be substituted for professional medical consultation.

I am still very sore but have plenty of meds and can always get

as much as I need. I also was not expecting to have this much

pain; I guess all objectivity flies out the window when its

personal.

Hawes did my ercp's and did the

surgeries. is one of the top pancreatic surgeons in the

country, I had my doubts but did some research on him.

If you have any trouble getting a referral let me know; I do have

some pull with those guys, especially , we go back a

long way.

[Guest guest]

,

Hey ya'll are talking about our favorite doctor, Dr. that is.

He is just a wonderful guy and has a great sense of humor. Yes Floyd

also saw Dr. Hawes who referred him to Dr. . When were you in

the hospital ? Floyd was in MUSC on 10 west from mid Sept.

to mid Oct., then was back in last Wednesday to Sat. It is possible

we ran into you. Last week he was on the 6th floor though, I like

the 10th best though. I am always wondering if there are members in

the hospital at the same time we are. Perhaps we should create a

button that can be worn to identify us to each other when we are in

the hospital. I have been tempted, especially when he was in for a

month, to go door to door and ask if any are members of PAI and if

not to give them the addy. I did that with Dr. and the nurses

at his clinic, as well as on the floor. Any ideas on the design? It

must be really unique and eye catching.

God Bless you all

Ruby

[Guest guest]

In a message dated 11/09/2003 11:48:14 AM Pacific Standard Time,

pancreatitis writes:

> A sphincteroplasty is when the surgeon open your intestine at the

> duodenum and SO unite. The sphincter is then surgically attached to

> the inner lumen of the duodenum; scar tissue is removed the

> sphincter is made larger as it is pulled through the intestinal wall

> and sutured to it. Muscle from the lumen of the intestine is made

> to replace the wall of the sphincter. A stent is placed and will

> remain in place until removed 6 weeks later with an EGD.

> I hope this helps and I am sorry but I missed your question earlier;

> I am still on a lot of pain meds.

>

Thank you . You explained it really well. Are there certain doctors

in the US who specialize in this or are many doctors who specialize in ERCP's

proficient at this as well?

My friend was told to go to either Boston or s Hopkins, but is open to

going somewhere else as well. She lives in Pittsburgh.

I hope you feel better!

Thanks. Malisa

[Guest guest]

,

I wanted to add to Jodi's message about the bone age because I

believe that there are issues regarding bone ages that may be

specific to RSS children. Instead of writing it all again I have

copied an old message that I hope describes it. Let me know if you

have questions:

From past post:

I will do my best explaining the bone age issue. For every year

that your body ages your bones grow a certain amount until they stop

growing at which time the bones in the hand are fused together.

Doctors have books that show pictures of hands at each year and they

determine a bone age on how much closer the bones are to that

completed state of fusion. It does not matter how big the hand is

or even the bones but how far along this fusion is. Bone age x-rays

are EXTREMLY difficult to read and most of the time you could not

get two doctors to agree.

The books that I described are considered the norm and most

doctors will use them to tell you how many years you are away from

complete fusion or complete growth. The most important thing for you

to understand is that RSS children do not work on the same timeline

as this " norm " . When an RSS child is young, most of them have a

delayed bone age. For example when they are 4 years old they may

have a bone age of 2 1/2 years old. Doctors will tell you that this

is a good thing because your child has an extra 1 1/2 years of extra

growth. It is a reassuring idea that although your child is small

now they will have extra time to grow. THIS IS NOT TRUE. What

usually happens to RSS children is that at some point their bone age

will begin to advance and will pass their actual age. For example

at 8 years old their bone age all of a sudden is at 9 years. This

can happen around the time the child is starting adrenarche or

puberty. Basically what I am saying is that the 1 1/2 extra years

you thought you had, magically disappears. During the time that the

bone age advances suddenly, there is usually NOT a sudden increase

in their height also.

For this reason it is imperative that pediatricians know that RSS

children usually will experience the quickly advancing bone age and

they should not plan on having the extra years shown in the delayed

bone age when the child is young.

I may have completely confused you, but I hope not. If you have

any questions, please post them.

Pattie Warren

> ,

>

> You were given the correct info about the bone age. The more

> delayed it is, the more time your son will have to grow.

>

> The only thing that I would like you to consider is keeping an

open

> mind about treatment for his height. While I do not think that

> people should be forced to use gh for their RSS children, I do

think

> that they should keep an open mind about it and really consider

all

> options. I will tell you why: Last summer at the MAGIC

convention,

> I met a wonderful young man in his later teens. He had RSS, but

no

> one - not even his doctor - ever told the parents about treatment

> options to help him grow. He just lived his life as best he

could,

> the parents never even thinking that something could be done for

his

> height. All of a sudden something clicked in the parents' heads

and

> they realized that he was quite short - well under 5 feet. They

> knew that this was a problem and they wanted to do something to

help

> him grow. The problem: his growth plates had fused (his bone age

> was past his chronological age), he had gone through puberty and

> there was nothing that could be done for him. Here this

teen/young

> man was, a very personable, intelligent, good looking guy and he

> could do nothing to become taller. And that was all he wanted -

to

> grow. My heart was aching for him. The parents, upon realizing

> that nothing could be done, were devastated and so upset with

> themselves for just going along with the doctor and trusting his

> judgement.

>

> Does this mean that I think everyone should use gh? No. It is a

> very personal decision. No one has the right to tell any parent

> what they should or should not do if it does not affect the

child's

> health or wellbeing. HOWEVER, I do think that every parent has

the

> right to know what the options are and to make an educated

decision

> as to what treatment they choose or not choose for their child.

>

> Sorry for my soapbox. I just want parents to know that they do

have

> a choice and if the doctor they are using will not give them

> options, then they should know that there are others who will.

>

> Jodi

[Guest guest]

Well i don't think that he gave up quickly. I think that just like we

have our concerns about her taking the shots, period, he has his

about the situation we are in with making sure she does get the shots

so that they can help her. We are going to see him again when we have

her in our care for the summer and reassess things then. We are not

giving up on anything that will help her. We are staying hopeful and

always having an open mind when it comes to keeping her healthy and

happy.

> ,

>

> I am very surprised that the doctor took your daughter off the gh

so

> quickly. A six month trial is not very long. It would seem to me

> that she would need some tweaking to get the best from the

> medication.

>

> My first thought is that if did not gain any weight, you are

> not likely to see much, if any, growth. As Dr. H. has said so many

> times to Max, " If you don't eat and gain weight, you won't grow. "

> GH alone will not increase her appetite that much. Are you using

> Periactin?

>

> The next thought was that perhaps is not on a high enough

> dose of gh. Was this doctor being on the cautious side and

> prescribing a relatively low dose? Again, Dr. H. starts out low so

> that she has room to increase if necessary. She does not like to

> give too much medication if less is working just fine.

>

> Another, more " delicate " question is whether or not she is getting

> the shots when she is not in your care. I know to be careful here

> because I don't want to ruffle anyone's feathers, so I'll leave it

> at that.

>

> Give these things some thought. I would speak to the doctor again

> and reassess the situation. I think he gave up too quicly.

>

> Jodi Z.

[Guest guest]

Hi Debbie,

I am in MA. If you are I'd love to chat properly. How is Mollie on

the GH? My daughter Jillie just went on this Thursday after our

appointment with Dr " H " .

Sorry I have to cut short - I'm at work right now and it's absudly

busy.

Chat with you soon?

> Hi ,

> I have been reading your posts. I was wondering if you are in

Mass.?

> My daughter is just about 29 months. Her name is Mollie. She has

been

> Gtube fed since 9 months of age. She is now on ght as well for a

> growth hormone deficiency as well as RSS. SHe too is on

Reglan,Zantac

> for pretty severe reflux. And periactin. I would love to chat.

>

> Debbie

[Guest guest]

---Hi ,

Yes, I am in Mass. as well.I believe we may have more than just our

daughters in common. I would love to chat. You say that you are at

work, as I notice the time, I also work nights. I also think that we

know someone mutually. Please feel free to respond to me privately as

well. Mollie has definitly gained much strength on the GH. As far as

weight and height go, it has been a little slow. She is just 20 # and

31 inches she is 29 months in age. But I can tell that her muscle

mass has changed. She cried alot in the beginning with the shots.

Although she still does, it is getting better. She stops crying the

minute it is done and is on to whatever she is doing. As time goes on

hopefully Jillie will get better at it as well.

I would love to chat with you too.

Debbie

In RSS-Support , " nightnuse4babies "

wrote:

> Hi Debbie,

> I am in MA. If you are I'd love to chat properly. How is Mollie on

> the GH? My daughter Jillie just went on this Thursday after our

> appointment with Dr " H " .

> Sorry I have to cut short - I'm at work right now and it's absudly

> busy.

> Chat with you soon?

>

>

>

>

> > Hi ,

> > I have been reading your posts. I was wondering if you are in

> Mass.?

> > My daughter is just about 29 months. Her name is Mollie. She has

> been

> > Gtube fed since 9 months of age. She is now on ght as well for a

> > growth hormone deficiency as well as RSS. SHe too is on

> Reglan,Zantac

> > for pretty severe reflux. And periactin. I would love to chat.

> >

> > Debbie

[Guest guest]

I suppose it will depend on what your OS is planning to do (regarding

bands/wires). I

can only speak from my experience--I'm banded, so yes, I've got spaces. Check

out

my pictures (there's a message with a link a few messages up) and you'll see

what I've

got.

I would definitely ask them about taking your meds--maybe ask your surgeon or

give

a pharmacy a call. I was nervous about it beforehand because I obviously didn't

want

to go off an antidepressant cold turkey, especially considering I would probably

need

it! A couple of days pre-op I got a call from the pharmacy at the hospital, and

they

asked me what meds I was taking so they could have it ready for me when I got

there.

Anyway, they're going to see to it that you get what you need; don't worry.

[Guest guest]

thank you. also, i don't want to lose a lot of weight. do you think it's

possible to keep my weight up after the surgery?

>

>Reply-To: orthognathicsurgerysupport

>To: orthognathicsurgerysupport

>Subject: [Orthognathic Surgery Support ] To

>Date: Mon, 09 Aug 2004 03:31:11 -0000

>

>I suppose it will depend on what your OS is planning to do (regarding

>bands/wires). I

>can only speak from my experience--I'm banded, so yes, I've got spaces.

>Check out

>my pictures (there's a message with a link a few messages up) and you'll

>see what I've

>got.

>

>I would definitely ask them about taking your meds--maybe ask your surgeon

>or give

>a pharmacy a call. I was nervous about it beforehand because I obviously

>didn't want

>to go off an antidepressant cold turkey, especially considering I would

>probably need

>it! A couple of days pre-op I got a call from the pharmacy at the

>hospital, and they

>asked me what meds I was taking so they could have it ready for me when I

>got there.

>

>Anyway, they're going to see to it that you get what you need; don't worry.

>

_________________________________________________________________

Express yourself instantly with MSN Messenger! Download today - it's FREE!

http://messenger.msn.click-url.com/go/onm00200471ave/direct/01/

[Guest guest]

> thank you. also, i don't want to lose a lot of weight. do you think it's

> possible to keep my weight up after the surgery?

>

I think you're bound to lose some weight, but there are definitely things you

can do to

minimize that amount. Here's what my dietician sister said:

1. Your body needs protein for rebuilding and healing, so eat a lot of protein.

(The

nurse at the hospital told me I should get at least 55g a day). Lots of the

shakes/

mixes have extra protein, and you can also throw a scoop of protein powder into

smoothies and shakes. The kind I got has 13g in one scoop. Also, soft meat

blends

well in the blender.)

2. You have to eat a lot of calories so that your body has enough of a supply

for

energy. Otherwise, it will use your protein for energy, and you don't want

that. That

means loss of muscle and loss of those building blocks. My sister said, " Forget

all the

low-fat stuff I talk about. Bring on the fat and sugar! "

3. Eat often throughout the day so your body has a constant supply coming in.

(At

first, all I wanted to do was EAT because I was so hungry! I felt like a

newborn

because I ate every 1 1/2 to 2 hours.)

The nuse at the hospital advised me to take in 2000-2200 calories a day. The

handout from the OS said 2600! I'm taking in nowhere near that, but I would

guess

I'm hitting around 2000. I've only lost 4-5 pounds in 11 days, so I think

that's pretty

good.

Like a lot of women, I am always up for weight loss, so it was hard for me to

get my

head around the " eat a lot " recommendations pre-op. Post-op, though, my hunger

pangs and other pains won out.

[Guest guest]

thank you for the information.

alex

>

>Reply-To: orthognathicsurgerysupport

>To: orthognathicsurgerysupport

>Subject: [Orthognathic Surgery Support ] Re: [Orthognathic Surgery

>Support ] To

>Date: Mon, 09 Aug 2004 12:47:46 -0000

>

>

> > thank you. also, i don't want to lose a lot of weight. do you think it's

> > possible to keep my weight up after the surgery?

> >

>

>I think you're bound to lose some weight, but there are definitely things

>you can do to

>minimize that amount. Here's what my dietician sister said:

>

>1. Your body needs protein for rebuilding and healing, so eat a lot of

>protein. (The

>nurse at the hospital told me I should get at least 55g a day). Lots of

>the shakes/

>mixes have extra protein, and you can also throw a scoop of protein powder

>into

>smoothies and shakes. The kind I got has 13g in one scoop. Also, soft

>meat blends

>well in the blender.)

>

>2. You have to eat a lot of calories so that your body has enough of a

>supply for

>energy. Otherwise, it will use your protein for energy, and you don't want

>that. That

>means loss of muscle and loss of those building blocks. My sister said,

> " Forget all the

>low-fat stuff I talk about. Bring on the fat and sugar! "

>

>3. Eat often throughout the day so your body has a constant supply coming

>in. (At

>first, all I wanted to do was EAT because I was so hungry! I felt like a

>newborn

>because I ate every 1 1/2 to 2 hours.)

>

>The nuse at the hospital advised me to take in 2000-2200 calories a day.

>The

>handout from the OS said 2600! I'm taking in nowhere near that, but I

>would guess

>I'm hitting around 2000. I've only lost 4-5 pounds in 11 days, so I think

>that's pretty

>good.

>

>Like a lot of women, I am always up for weight loss, so it was hard for me

>to get my

>head around the " eat a lot " recommendations pre-op. Post-op, though, my

>hunger

>pangs and other pains won out.

>

_________________________________________________________________

Don’t just search. Find. Check out the new MSN Search!

http://search.msn.click-url.com/go/onm00200636ave/direct/01/

[Guest guest]

Hi ;

My son, Kirkland also developed Infantile Spasms

at 2.5 mos. This prompted his first bout of hospital

admissions which resulted in many tests including a

muscle biopsy which eventually indicated Partial

Complex One Deficiency. It took us quite awhile to

get a diagnosis. Until that time, our neurologist

treated Kirk assuming his seizures were caused by

neurological problems and our mito doc treated him

as though he had mito disease. It was very confusing

because everyone was so evasive and afraid to diagnose

him. We never were able to control the Infantile

Spasms very well and they eventually developed into

generalized seizures. We still battle these

intractable nightmares.

I was quite active on the Infantile Spasms Yahoo

group. Have you joined it yet? If not, you might

find it resourceful. Are Daphne's spasms under

control?

Feel free to write. We might end up having a lot in

common.

As far as how one knows they have mito disease if

it's non-specified, my impression has always been that

it's really an educated guess based on clinical

symptoms but with no real genetic proof. Don't quote

me though.

You can check out some of Kirk's history on his

webpage: www.caringbridge.org/canada/kirklandk/

Take care,

Kilbride, mom to Evan 10 yrs, Carson 7yrs, and

Kirkland 3.5 yrs. - Complex One Deficiency,

intractable seizures, g-j tube, 24 hr O2, suction,

oximetry, Cortical Visual Impairment, severe dev'l

delays, ...

--- Cj gstone98@...> wrote:

> New to group: how were your

> children diagnosed?

>

>

> Hi! I am a new member, and my daughter - Daphne -

> is 10 months old. She

> has infantile spasms (a seizure disorder),

> hypotonia, coarctation of the aorta

> (a congenital heart defect) and milk protein

> intolerance. Her doctors have no

> idea what the cause is of her seizures/

> developmental delay, and she's

> undergone pretty extensive genetic testing, and

> everything's come back

> negative, so far.

>

> We still need to do a muscle biopsy and an MRS.

> On Friday we had a visit to

> Daphne's opthamologist, who noticed changes in her

> eyes since she was last

> examined about 6 months ago. First, there was

> some scarring in one eye,

> second her optic nerves were pale (optic atrophy).

> Her doctor said this could

> indicate a mitochondrial disorder.

>

> I thought I'd introduce myself, and was hoping you

> wouldn't mind telling me

> how and when your children were diagnosed. I

> noticed some in the group

> said the mito disorder was unspecified... and I

> was wondering how they know,

> then, that it's a mito disorder?

>

> I'm also really new to all of this, so any other

> information you could share

> would be much appreciated!

>

> Thanks,

>

>

>

>

>

>

> Please contact mito-owner with any

> problems or questions.

>

[Guest guest]

Cj--

Thank you so much for the information! I am a member of the infantile

spasms group... it has been VERY helpful. I've recommended the site to

others, too.

I saw Kirkland's website... what a cutie! I hope to create a page for Daphne

sometime soon (it's been on my " to do " list for awhile, though).

At the moment, Daphne is seizure free (and has been for 32 days *knock on

wood*) on Vigabatrin. Before that, we tried ACTH, phenobarbital, Depakote,

Klonopin, Gabatril and the Ketogenic diet (with varying combinations) without

much success. She'd sometimes have a seizure free week or two, but they'd

always break through. I am constantly on my guard... at this point, I think

another seizure would just break my heart.

I know what you mean about Doctors' evasiveness. I have always felt like

some of Daphne's doctors are trying to make things sound like they could be

OK, and then I read their consult notes and I'm horrified. She has so many

things wrong with her, and I don't know why. And, on top of that, I am afraid

to

find out! It's just an emotional rollercoaster, which, I'm sure you know all

about.

Thanks,

Thanks again for your post.

>

>

> > New to group: how were your

> > children diagnosed?

> >

> >

> > Hi! I am a new member, and my daughter - Daphne -

> > is 10 months old. She

> > has infantile spasms (a seizure disorder),

> > hypotonia, coarctation of the aorta

> > (a congenital heart defect) and milk protein

> > intolerance. Her doctors have no

> > idea what the cause is of her seizures/

> > developmental delay, and she's

> > undergone pretty extensive genetic testing, and

> > everything's come back

> > negative, so far.

> >

> > We still need to do a muscle biopsy and an MRS.

> > On Friday we had a visit to

> > Daphne's opthamologist, who noticed changes in her

> > eyes since she was last

> > examined about 6 months ago. First, there was

> > some scarring in one eye,

> > second her optic nerves were pale (optic atrophy).

> > Her doctor said this could

> > indicate a mitochondrial disorder.

> >

> > I thought I'd introduce myself, and was hoping you

> > wouldn't mind telling me

> > how and when your children were diagnosed. I

> > noticed some in the group

> > said the mito disorder was unspecified... and I

> > was wondering how they know,

> > then, that it's a mito disorder?

> >

> > I'm also really new to all of this, so any other

> > information you could share

> > would be much appreciated!

> >

> > Thanks,

> >

> >

> >

> >

> >

> >

> > Please contact mito-owner with any

> > problems or questions.

> >

[Guest guest]

Whoa, !

Don't we count? " so we have all areas of the

> country represented now (NYC, San Fran, and the midwest) "

Just in case you disremember, there's a whole big area called the

Southeast -- but I'm sure there are folks here, too. Not to mention

the Northwest. (and, for that matter, the Southwest, neither of which

San Francisco makes me think of. Although I'd love to be in San

Francisco -- or NYC, or the Midwest, for that matter!)

>

> Hi Maddie,

>

> I'm having surgery the same day as you are (Dec 8)! I'm probably

> having upper only (study models are being taken Nov 2 so I should

> know for sure in Nov). I'm in Wisconsin...

>

> I'm having surgery for structural reasons. I have an open bite and

> have been suffering with terrible TMJ problems for about 7 years. I

> know that this type of surgery doesn't always help TMJ problems,

but

> I need to at least try because it's pretty unbearable. So surgery

for

> me is something I'm totally looking forward to! Don't get me wrong,

> I'm sure I'll be plenty nervous, but I celebrated getting a surgery

> date (its like the light at the end of the tunnel for me).

>

> Anyway, just wanted to introduce myself to my new surgery buddy!

Keep

> in touch!

>

>

[Guest guest]

Whoa, !

Don't we count? " so we have all areas of the

> country represented now (NYC, San Fran, and the midwest) "

Just in case you disremember, there's a whole big area called the

Southeast -- but I'm sure there are folks here, too. Not to mention

the Northwest. (and, for that matter, the Southwest, neither of which

San Francisco makes me think of. Although I'd love to be in San

Francisco -- or NYC, or the Midwest, for that matter!)

>

> Hi Maddie,

>

> I'm having surgery the same day as you are (Dec 8)! I'm probably

> having upper only (study models are being taken Nov 2 so I should

> know for sure in Nov). I'm in Wisconsin...

>

> I'm having surgery for structural reasons. I have an open bite and

> have been suffering with terrible TMJ problems for about 7 years. I

> know that this type of surgery doesn't always help TMJ problems,

but

> I need to at least try because it's pretty unbearable. So surgery

for

> me is something I'm totally looking forward to! Don't get me wrong,

> I'm sure I'll be plenty nervous, but I celebrated getting a surgery

> date (its like the light at the end of the tunnel for me).

>

> Anyway, just wanted to introduce myself to my new surgery buddy!

Keep

> in touch!

>

>