Re: some advice please

[Guest guest]

I did the testing before we started the diet and the results for casomorphin

was 61.3 when I called they told me to try the diet and see if it helped

because he wasnt that elavated. I hate to reintroduce milk after him making

so much progress. Friday he asked me for a cookie by saying " cookie plea "

that was the first time he has ever asked for anything. He sometimes repeats

words though.

Re: Some Advice Please

> Your child may not be ALLERGIC to milk, but he may have a casein

> intolerance. I would do the peptide testing at Great Plains before

> reintroducing milk. That will tell you if you need to stay away from

> casein.

>

>

>

> > Hi list members!

> >

> > I don't usually post but I have been a member for a few months now

> and I don't know what I would do without all of you! We have had our

> son on the diet for 5 months now and have seen huge improvements. We

> are only gfcf as of right now but we just got our sons test results

> back today and he tested alergic to wheat, nuts and soy. We have

> always known he was allergic to nuts because he gets a rash from it

> but we haven't seen any reactions from the soy. The doctor said he

> was mildy alergic to it and as long as we are not seeing reactions to

> it then it would be ok to continue using soy. He was not alergic to

> milk though. So my question is do we just go wheat/gluten/soy free or

> what?

> >

> > Thanks,

> > Elliott

> >

> >

> >

[Guest guest]

Your child may not be ALLERGIC to milk, but he may have a casein

intolerance. I would do the peptide testing at Great Plains before

reintroducing milk. That will tell you if you need to stay away from

casein.

> Hi list members!

>

> I don't usually post but I have been a member for a few months now

and I don't know what I would do without all of you! We have had our

son on the diet for 5 months now and have seen huge improvements. We

are only gfcf as of right now but we just got our sons test results

back today and he tested alergic to wheat, nuts and soy. We have

always known he was allergic to nuts because he gets a rash from it

but we haven't seen any reactions from the soy. The doctor said he

was mildy alergic to it and as long as we are not seeing reactions to

it then it would be ok to continue using soy. He was not alergic to

milk though. So my question is do we just go wheat/gluten/soy free or

what?

>

> Thanks,

> Elliott

>

>

>

[Guest guest]

I am uncertain if your child is 100% GFCF since many people get this confused.

Is your child 100% Gluten Free which means no wheat, oats, barley, whey, etc.

or does he eat wheat?

Your message sounds as though he still eats wheat.

Could you elaborate on this thanks.

Sharon

[Guest guest]

Did you do an IgG allergy test, or IgA (I think I have the abbreviations

correct)....the first is for latent allergies, which are the most

problematic for many of these kids, since you can't " see " the obvious

reactions all the time. the second is just the obvious immediate

reactions. My son was hardly allergic to anything at all on the second,

and is allergic to " everything " according to the first test! So we're

going by THAT one. Now I notice little things I never noticed before,

like nose bleeds for a REASON, soon after a certain food, and behavior

changes, which I was never aware of before. His red ears have gone away.

I never knew what caused them. So if you didn't do that kind of test, I

would recommend it highly. And maybe finding a doctor who would be more

cautious as opposed to saying it's ok if there's no big reaction, might

be a good idea, too.

On Mon, 18 Jun 2001 14:24:33 -0500 " & Elliott "

writes:

> Hi list members!

>

> I don't usually post but I have been a member for a few months now

> and I don't know what I would do without all of you! We have had

> our son on the diet for 5 months now and have seen huge

> improvements. We are only gfcf as of right now but we just got our

> sons test results back today and he tested alergic to wheat, nuts

> and soy. We have always known he was allergic to nuts because he

> gets a rash from it but we haven't seen any reactions from the soy.

> The doctor said he was mildy alergic to it and as long as we are not

> seeing reactions to it then it would be ok to continue using soy. He

> was not alergic to milk though. So my question is do we just go

> wheat/gluten/soy free or what?

>

> Thanks,

> Elliott

>

>

>

[Guest guest]

No our son is wheat free. He has been that way since febuary but we took him

off the diet for a week to see what would happen and he started alot of the

symptoms we hadnt seen in along time.

Re: Some Advice Please

> I am uncertain if your child is 100% GFCF since many people get this

confused.

> Is your child 100% Gluten Free which means no wheat, oats, barley, whey,

etc.

> or does he eat wheat?

> Your message sounds as though he still eats wheat.

> Could you elaborate on this thanks.

> Sharon

>

>

>

[Guest guest]

If you have seen results on the GFCF diet alone, I would stick to it the way

you have been doing so for 5 months. Just because he is not " allergic " to

these things does not mean he is not " sensitive " or " intolerant " to the

offending foods. Best regards, Cheri****

[Guest guest]

Sandy

My heart is breaking. You said he is the last Dr on your insurance list.

What about a Dr in another area of your state or another state. I know that

many insuance companies cover several states. Do you have an option there?

I truley believe that it is a conflict of interest for him to treat and

review the same person. If your insurance is going to do a review demand he

not be included. You may want to pull a fast one and ask if he'd be willing

to testify on your behalf at malprcatice trials for the other Dr's that

treated you after all if you don't have pancreatitis then those surgeries

were unnecessary and could have put you in great danger. And they put great

physical and mental strain on you and your families. You may find that he is

willing to rethink his diagnosis after being asked to go against his peers.

When we took Cassie to Boston,we spent 45 minutes with Dr Fox the specialist

at Boston childrens - Our whole 45 minutes was an intense medical history on

Cassie - starting with my pregnancy. He spent no time at that point looking

at her existing medical records. He was interested like I said in her

medical historywhen I questioed this his comment was I have found that others

Dr's never seem to ask the right questions for me or they make interputaions

instead of writing the fact. I ask well what about the 2 " if records I

brought you and the 15 pound of films. He told us at `that time the he

qould go ever her tests and records alone, on his own. He would then have

his coleagues reveiw them also. After that, her films would be reviewed by

his radiologist, her labs by his pathologist and then they would all hgave a

conference on her case. After that A report would be made to her Local GI

and her pediatrician, any and all corespondences and reports to them would

also be sent to us. That's just what we got We tease and call it the $2500

Office visit. By the time all these guys got paid, that's what it cost.

Durng the 1st few weeks after we all felt a big disappointment. Cassie kept

saying sorry I wastd your time. But now 6 month later and 5 months after we

got his report we do feel it was well worth it.

Just a few things we did get told at the time. 1st and foremost if your

ideopathic it means that we are to stupid to figure out your problem, alot of

good our high $ med school degree does you. 2) each and every attack will

do some type of damage though it may still be only at the cellular level

invisible to the human eye nomatter what the test. 3) that damage is

non-repairable by man or nature, the pancreas is unable to fix itself. 4)

our goal should be to prevent future damage not trying to fix the unfixable.

5) what does not bother her today or next week may cause her incredible pain

a month or a year from now. We are starting to see that now with Cassie so

we find her dietary requirements are in constant change. 6) he said to

always remember that people have differant levels of what is to be considered

tolerable pain and as a person lives with pain they become used to it. Thus

enabling them to wait longer before they must take medications to relieve it.

He went on to say that it is a very dangerous thing - pain indicates a

problem - and should be taken very seriously even if her labs show no

elevations.

About 2 months ago I came across a book at our library called Special Kids

Need Special Parents. I picked it up because it had a chapter dealing with

chronic pain. After reading the 1st page of the intro I was in tears and

Mike wanted to know what was wong so I ended up reading aloud to him then we

were both crying. Everything we had felt for the past 3 years was on those

pages, and all our emotions just came pouring out, neither one of us had had

realized how much we were holding in. We then shared this with Cassie and it

started all over again, the 3 of us crying and holding each other. It did us

all good. My 3 yr old was not included in this because he still does not

understand. Every time Cassie has an attack he just want to go give blood to

make his Sissy better.

Anyway my point with this is I tried to share this with my family. Out of

the 6 other brothers and sisters and my parents only 2 of my older brothers

read it. They have a much greater understanding of what we are going thru.

Both live in other states but both are willing to spend hrs now IMing back

and forth when I feel the need for extra emotional support. The rest of the

family wont read it. Though yoi may think you are an adult now you will

always be your parents child, no matter how old. So.. you are that special

kid and you do need special parents.

Good luck, and god Bless

Patty Hurst

Bangor, ME

Maine State Rep

PAI

[Guest guest]

Cassie's last ultra sound which was on the 1st of this month indicated no

problems yet her Dr did not say she was cured. He told me point blank - we

couldn't even view more than 1/2 the pancreas - the tail was completey

obscured by other organs. and much seemed blurry - so I know where your

coming from with that. Something new though that we were just made aware of

then was her kidney's. He says that this report came back saying that again

her left kidney was significantly larger than the right one. Yikes! What

do you mean again? He then told us every ultra sound and CT has indictaed

this but the radiologist has always said it was equipment issues. We now

have a new area of worry with her - my mom has 2 different forms of kidney

disease, less than 30% function of both - cause unknown. So he will now be

investigating this. he said he could see Her 1st and second series which

were doen withing a 6 week time period maybe being equipment issues but 3

tiems in a row. the 3rd one being 18 months after the last series done no

way.

Does anyone else out there have kidney problems? The only thing that comes

to mind with Cassie now is her constant frequent need to pee. She has never

ever slept thru the night without having to get up to pee since she was potty

trained. Some nights it's 3 or 4 times. Except the night she had her

appendex out in 2000 and she was so ashamed cause she wet her bed 3 tiems

that night. I'm not supose to tell. that one. We have always put her need

to pee on my constant push of fluids on my family. We each drink at least a

gallon of water daily and that's before milk, juices etc..

Patty Hurst

Bangor, ME

Maine State Rep

PAI

[Guest guest]

Dear Sandy:

NO, NO, NO! You don't have to take pain meds every day. I have

chronic pancreatitis and I have been as sick in the past as anybody

on here and I DO NOT TAKE PAIN MEDS EVERY DAY! You can tell him I

said so too! My attacks have shrunk to an acute attack every now

and then and it hospitalizes me. I don't know which is worse to

tell you the truth.

This guy sounds like a total idiot. What you need to understand is

that there are a lot of politics in medicine. I don't know what

this guy would be gaining by misdiagnosing you except maybe some

kind of " perk " from the insurance company he is on the review board

with. The docs who made the diagnosis in the first place with

subjective tests are the ones you believe.

You say there is no GI doc that will accept you as a regular

patient. I assume these docs you are going to are " pancreas

specialists? " Also because the guy is a teaching professor and head

of the department doesn't mean he is any good. If he is in there

for reasons of advancing his own career he may not even be paying

attention to the patients! I know it sounds bad and I think (I

hope) the percentage of docs that do this are low but they do do it.

What part of the country do you live in?

As far as family, you probably have figured out family can be the

most unsupportive group. I have come to ignore them all. If you

have to bring a sandwich with you, bring it. If it causes you so

much stress, don't go. They will probably see it as rude but, you

GOTTA LOOK OUT FOR YOU! Believe me I had to learn it the hard way.

nothing is 100% accurate. If the CT scan didn't show it, the CT

scan didn't show it. Doesn't mean it wasn't there. It just means

it couldn't be seen or the doc interpreting the films DIDN'T see it.

If these docs have seen your abnormalities especially on ERCP which

is the most conclusive as it allows a doc to to actually see the

abnormality, then go with that. This last guy sounds like a turkey

to me.

If you have any more questions just ask. If I can help you please

let me know. I would like to. BTW, I am glad you don't have to

take pain meds every day.

Kaye

[Guest guest]

he hasdecided that the 2 previous University doctors were

wrong in their diagnosis and I DO NOT have ANYTHING wrong

with me. He has never examined me

....That my pancreas has " healed " on it's own and that I need no

treatment for it. I am worried for my meds, enzyme suppliments

and for proper future treatment.

The other doctors made their findings through surgery, blood

work,fecal fat test, amalyse and lipase levels that never rise

anymore andother tests to come to their conclusions. Just

because a CT Scan doesn't show any abnormalities...well, does

that necessarily mean there is nothing wrong with it?

How accurate is a CT Scan?

I am so confused and feeling very lonely here. If this doctor is

right, then all the surgery's I have gone through were for nothing.

Oh, may I add that this 3rd doctor also said he based this finding

on the fact that I DO NOT take pain meds everyday.

Sandy

Sandy,

This report makes me just steam...... Guess what? First of all, I

don't take pain medication every day, yet I have a burned out

pancreas, two pseudocysts, calification in massive quantities,

and chronic pancreatitis that has developed in diabetes mellitus

type 1. I suppose this doctor would say I was " cured " , huh?

You have the reports, blood tests, surgeries, extensive paper

documentation, fecal fat tests and ERCP's from the earlier

doctors to back up your diagnosis of chronic idiopathic

pancreatitis. While the lack of calicification or abnormalties

would possibly remove the label of " severe " from the diagnosis,

it certainly shouldn't change the diagnosis of chronic

pancreatitis. And we all know, the pancreas DOES NOT heal

itself.

And I would venture to say that a CT-scan COULD be wrong, or

not read correctly. Remember, I just had an ultrasound and an

MRCP done, both of which FAILED to report a pseudocyst the

size of a softball in the tail of my pancreas. The radiologist

concentrated on my other pseudocyst in the head which is only a

third of that size, and completely overlooked the larger one in the

tail. So, yes, IMHO, a CT-scan could be incorrect. I had to go

back again, yesterday, for a repeat CT-scan because of the

radiologist's failure to read the earlier reports correctly!

As far as this doctor goes, I think his diagnosis should be

refuted, mainly because it affects your insurance coverage, but I

don't know how to go about it. Maybe someone else here with

have some suggestions.....it's really put you in a difficult position

as far as getting the coverage you need for your meds, enzymes

and treatment. Let me think on that one.

You may have to go back to surgery happy doctor #2, if only to get

regular followup exams and prescriptions for your meds. Stand

firm and just tell him you won't have further surgery, he can't

MAKE you have it. I now this is difficult because he probably

makes each appointment uncomfortable by pressuring for

surgery, but right now I don't see what other options you

have......UNLESS, you could find a Pain Management Clinic that

is permitted by your insurance and get an appointment with

them. I met with a pain management doctor here and he was

more than willing to prescribe the meds I was using to keep me

out of pain with my cp.

As far as your family goes, I'm really very sorry that they are

making you feel like a martyr. They seem pretty insensitive to

your situation....but only you knows your own body and how it

feels.

If I can think of any other suggestions, I'll write again. I have to

hurry to leave for a doctor's appointment of my own, but I just

wanted to get this email out to you to let you know that I'm

outraged at what happened and thinking of you. We've been

side by side on a few pancreatitis forums together, sharing

advice and support for others, and I didn't want you to feel

abandoned and alone with this bizarre diagnosis. I hope

someone else in the group can offer some good suggestions for

you, too.

With hope and prayers,

Heidi

Heidi H. Griffeth

Bluffton, SC

State and Regional Representative

Pancreatitis Association, International

Note: All comments are personal opinion only, and should not

be a substitute for professional medical consultation.

[Guest guest]

Sandy,

you can have chronic pancreatitis without having everyday

pain. I was diagnosed as chronic 3 years before my pain

became an everyday thing. If the doctor hasn't even examined

you, how can he possibly tell what you do and do not have.

It definitely sounds like he has a conflict of interest. I

would make a complaint to the CA medical association. I

wish I could help more. He has too much of a reason to find

you healthy with no problems. Hopefully other will have more

ideas to help you.I wonder if you could possibly see a

lawyer about possible malpractice issue due to

negligence/conflict of interest.

I would trust the result of the surgeries and ERCP's over

the CT Scan.

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]

Sandy,

No, it is not true that everyone who had chronic pancreatitis takes

pain meds every day. I am one of the extremely luck individuals

that doesn't have to. I have a standing prescription, my dr. renews

without question, as I don't need to take them daily, and my refills

show that there is certainly no abuse going on. But I still have to

be careful. If i don't stay on the diet, or make sure to get enough

rest, I can aount on a recurrance. They son't send me to the

hospital every time, but tha's because I take my meds, and HAVE the

meds that I need.

I don't know what insurance plan you have, so I can't help there.

According to my GI specialist (whom I LOVE nad trust), my condition

will never go away. I can help keep it in remission by being a good

girl, but I can't get rid of it, and he can't cure it.

He did tell me that the cysts can go away on their own, if the

pancreas can be kept " cool " enough. Mine did, and I thank God daily

for a dr. that listened to me, educated me, and explained things to

my husband in a way that makes his understanding of my illness and

its symtoms that he is not only much more patient, but actually sees

the attack comiong before I do sometimes, just from my complexion

and the look in my eyes.

My suggestion is that you continue to behave as if you were on the

verge of an attack. Take your enzymes, stick to the diet, and

monitor closely how your body reacts on those occassions wherre

lowfat eating is impossible. And in the meantime, enjoy to fact

that you aren't in constant pain.

Hang in there, before I found my current dr, I had the same

problems with disbelief. And multiple, close together, violent

attacks. Since he's been treating me(Six months now), I haven't had

a single attack that I couldn't get rid of by switching to an Ensure

diet. I do use the grocery store brand. We have H E B's here, and

their brand is really good and really inexpensive. Point is, it

does get better.

With prayers,

Anne

[Guest guest]

Hey! I feel better after reading your note. Tell Cassie, yes!,

others do have problems. I've had the same problems, but only for

about the last 18 months, since I had a catheter in the hospital. I

thought I was just getting old (which may still be the case!).

Please let her know she is not alone. And it might not be the

pancreatitis. My 13 year old (then 8) was having real problems at

night, to the point that she wouldn't spend the night at friends.

Her pediatrician ran some tests, and said she just had a small

bladder, and to cut off liquids about an hour and a half before bed,

and make the bathroom the last stop before she went to sleep. It

has helped, but she still gets up almost every night.

Hope this helps,

Anne

[Guest guest]

Patti...has Cassie been tested for diabetes?

> Does anyone else out there have kidney problems? The only thing

that comes > to mind with Cassie now is her constant frequent need to

pee. She has never > ever slept thru the night without having to get

up to pee since she was potty > trained. Some nights it's 3 or 4

times. > Patty Hurst

[Guest guest]

No she hasn't It is a constant worry of ours for her and one we are

constantly ignored about. Cassie's physical in next Friday and we will try

again there to see if hell order testing if no then well try with her GI when

we see him in june. Both Mike and I have been saying for about 2 months we

feel she should be tested and would like her working in advance with a

diabeties specialist prior to onset as a posible preventitive measure. You

know aditional diet control. WE'll se how it goes. Thanks for the

suggestion.

Patty Hurst

Bangor, ME

Maine State Rep

PAI