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In a message dated 10/27/99 10:05:42 AM Central Daylight Time,

kayday@... writes:

<< If things are so wonderful, I bet you are wondering why I'm on this list -

I still need your support and friendly advice. >>

Kay,

Hi and welcome. I'm new here too. This list is great for support. If these

people cant motivate you, nobody can. (smiling) You have done sooooo good on

this woe, that you can be a big help to others as well. Keep going, you are

terriffic!!

Sheila In Texas

187/181/135

HAPPY HALLOWEEN

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Dear Kay:

Welcome to this list. I think you have come to the right spot for

support in coming here. You were very smart to catch yourself after a week

of indulgence. Get straight back to induction!!!

Grace

206+/192/150

started 9/8/99

14+ pounds gone forever!

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To Jeanie!

Good luck to you. I think there is a lot to learn about managing pain and

depression in your message.

Can you describe more exactly what the Therap.Massage Spec. do to help you

with the pain?

Many regards from Rose in Sweden

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To Jeanie!

Good luck to you. I think there is a lot to learn about managing pain and

depression in your message.

Can you describe more exactly what the Therap.Massage Spec. do to help you

with the pain?

Many regards from Rose in Sweden

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HI AND HAVE A GOOD MONTH

WHAT IS THE< >?

DIMITRIOS

rose-marie.isakson@... wrote:

> From: rose-marie.isakson@...

>

> To Jeanie!

>

> Good luck to you. I think there is a lot to learn about managing pain and

> depression in your message.

> Can you describe more exactly what the Therap.Massage Spec. do to help you

> with the pain?

>

> Many regards from Rose in Sweden

>

> ------------------------------------------------------------------------

> MAXIMIZE YOUR CARD, MINIMIZE YOUR RATE!

> Get a NextCard Visa, in 30 seconds! Get rates as low as

> 0.0% Intro or 9.9% Fixed APR and no hidden fees.

> Apply NOW!

> http://click.egroups.com/1/2067/5/_/616793/_/951946759/

> ------------------------------------------------------------------------

>

>

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penny-

First of all, welcome.

A copule of things come to mind. First, you don't say anything here about

eosinophils actually being found in the colon? or on biopsies? That is the

only definitive way to diagnose GI eosinophilic diseaes. Secondly, there is

no proven correlation between peripheral (blood) eosinophilic levels and

eosinophilic enteropathies. One can have huge elevations of eos in the

blood and have none in the GI tract and visa-versa. Another thought is that

if his weight is at 90%, something is obviously working REALLY WELL. does

anyone else on the list have a kid diagnosed with eos disease whose weight

was this good?

if in fact, your son does have some form of eosinophilic enteropathy, the

docs are right in suggesting Neocate, or one of the amino-acid based

formulas. Your son is young enough that it would be worth trying to " force "

the issue a bit and see if you can get him to take it. If not, and he does

in fact have one of the forms of GI eos disease, he could end up having a

tube for the formula and you don't want that if you can avoid it. Most of

our kids were diagnosed later and the tubes became a necessity for them.

I hope they come up with some answers for you. It sounds like there are a

LOT of questions still unanswered. ONe has to wonder if you are dealing

with some food sensitivities or allergies and not with eos disease at all.

Time will certainly tell as the biopsies will show eos eventually if he does

in fact have eos disease.

Good luck and again, welcome.

Steph.

[eosinophilic gastroenteritis] intro

>

>

>Hi,

>My name is Penny. I'm a mom to age 4, and Philip age 6.5 months.

> was born with a cleft palate. We had a terrible time feeding him,

but

>finally learned about the Haberman feeder. He had formula and breastmilk

via

>this bottle. I pumped for six months, but gave up when my " output " fell to

less

>that 4oz a day. He was fine on the formula, but developed lactose

intolerance.

>He also had a mystery food allergy for about a year which gave him hives.

He

>had surgery for the cleft at 11 months, and now is " only " allergic to cats

and

>mold.

>My baby, Philip, developed green poop at 5.5 wks of age. He was

exclusively

>breastfed. I looked it up in various baby books, but all said that it was

>normal, or didn't say anything at all. I even forgot to say something at

>Philip's 2 month checkup. After we got home that day, I noticed some

blood in

>his poop, so I called the doctor. He told me to go off milk. I did, but

after

>2 wks, there was no improvement. So the doctor ordered stool cultures and

blood

>tests. The stool tests revealed blood (duh!) and the blood tests showed

that

>he was slightly anemic and had an eosinophils level at 13. (13 percent?)

>anyway the doctor said that it was the highest that he had seen in a child

under

>2. He said to give it some more time. When he was three months, on my own

I

>went off soy, peanuts, fish, shellfish (never ate it anyway) and corn.

Then a

>week later I went off wheat, eggs, nuts, citrus, and tomato. For a while I

went

>off potato, but that left me with not much to eat when we are out and

about.

>After Christmas, when Philip was 4 months old, we went to see a pediatric

>gastroenterologist. Blood tests revealed that he had eosinophils at 9, and

was

>only borderline anemic. She put him on iron and did a colonoscopy the next

>day. He has a port wine stain around his ear, so she wanted to rule out

one in

>his colon. His colon looked pretty good. There were glands that looked

>swollen, but no eosinophils. She still felt that he has eosinophilic

colitis,

>but that it is " partially treated " . I should also note that Philip has

always

>been 90% in weight, so she doesn't think he has any problems with his small

>intestine. She also put me on pancreatic enzymes to help me digest

protein. No

>matter what I eliminate, he still seems to be the same. I do know how to

make

>it worse. Beans and chicken seem to be bad. I'm trying to eat less

protein,

>but it isn't helping much. I still see some blood in every diaper.

>The doctor's recommendation was for me to wean Philip and put him on

Neocate.

>We last saw the doctor 6 wks ago. His eosinophils were still 9, but he is

no

>longer anemic, but has low iron stores (I think that's normal for his age.)

At

>that time the doctor really really wanted me to wean him, but we were

leaving on

>a trip in mid February, so she said to do it when we returned. Well we've

been

>trying to get him to take a bottle. He doesn't have a clue and he is only

>slightly better with a sippy cup. The most that I've gotten into him is an

>ounce. I was so thrilled to be able to finally breastfed a baby, and it

was

>going so well. The doctor thinks the only thing to do is make him go cold

>turkey and starve him into accepting the Neocate. We have also started him

on

>rice cereal, as he was showing an interest in food. This may complicate

things,

>but I would think he would be a lot worse if he were reacting to rice.

Actually

>he doesn't seem to like the rice cereal much. It's pretty bad.

>

>-Penny

>

>

>------------------------------------------------------------------------

>GET A NEXTCARD VISA, in 30 seconds! Get rates as low as 0.0%

>Intro or 9.9% Fixed APR and no hidden fees. Apply NOW!

>http://click.egroups.com/1/937/4/_/474479/_/952629170/

>------------------------------------------------------------------------

>

>

__________________________________________________

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Hi Penny -

I am the mom to Caton, 13 mnths, who has not yet been diagnosed with

anything yet (we have more tests later this month), but can't tolerate

almost all foods. The only foods we know that he tolerates are bananas,

sweet potatoes, and Alimentum. Like your Philip, his weight gain is

great - he's 23 lbs - so getting a dr. to take his food issues seriously

has been difficult.

Wow, I sympathize with your dilemma in breastfeeding, that must be hard.

Personally I don't know what I would do if in your situation, but my

instict says that your breastmilk has to be better than anything

manufactured. Have you tried contacting La Leche League and asking if

they have any info for you, or have any experts you could contact?

There is also a world-reknown breastfeeding expert in Toronto, Canada,

Dr. Jack Newman, who may have ideas for you. I have corresponded with

him via email several times and he is really wonderful - extremely

responsive and really, he is considered the world expert on

breastfeeding. If you do a web search, you will probably come up with a

site that has an email link for him. If you can't find it, let me know,

I can get his email address for you.

The GI was pushing me to get Caton going on solids at a pretty early age

(a little less than 4 months old) and he flatly refused. In fact, he

really had no interest in solids at all, and wouldn't eat more than a

few spoonfuls at a time until he was past 7 months old. You know, these

kids are so smart, I think they instinctively know what's good and bad

for them and let us know in no uncertain terms! So I guess I'm not

surprised your Philip is rejecting the cereal. Have you also tried

other high-quality solids, like bananas, avocado, sweet potatoes,

squash? He may prefer things with a little more flavor.

Just some thoughts for you, I know it's hard with little ones, don't you

wish they could tell you what's wrong? It's frustrating.

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Wow, what a great idea. I contacted Dr. Newman, and guess what, an e-mail

was waiting for me this morning! What a terrific Dr. Doesn't it make you

wonder, when these experts are easier to contact than your own family

doctor! He gave me some things to try.

Do you know of any good web links on introducing table food to breastfed

babies?

-Penny

Fuller wrote:

>

>

> Hi Penny -

>

> I am the mom to Caton, 13 mnths, who has not yet been diagnosed with

> anything yet (we have more tests later this month), but can't tolerate

> almost all foods. The only foods we know that he tolerates are bananas,

> sweet potatoes, and Alimentum. Like your Philip, his weight gain is

> great - he's 23 lbs - so getting a dr. to take his food issues seriously

> has been difficult.

>

> Wow, I sympathize with your dilemma in breastfeeding, that must be hard.

> Personally I don't know what I would do if in your situation, but my

> instict says that your breastmilk has to be better than anything

> manufactured. Have you tried contacting La Leche League and asking if

> they have any info for you, or have any experts you could contact?

> There is also a world-reknown breastfeeding expert in Toronto, Canada,

> Dr. Jack Newman, who may have ideas for you. I have corresponded with

> him via email several times and he is really wonderful - extremely

> responsive and really, he is considered the world expert on

> breastfeeding. If you do a web search, you will probably come up with a

> site that has an email link for him. If you can't find it, let me know,

> I can get his email address for you.

>

> The GI was pushing me to get Caton going on solids at a pretty early age

> (a little less than 4 months old) and he flatly refused. In fact, he

> really had no interest in solids at all, and wouldn't eat more than a

> few spoonfuls at a time until he was past 7 months old. You know, these

> kids are so smart, I think they instinctively know what's good and bad

> for them and let us know in no uncertain terms! So I guess I'm not

> surprised your Philip is rejecting the cereal. Have you also tried

> other high-quality solids, like bananas, avocado, sweet potatoes,

> squash? He may prefer things with a little more flavor.

>

> Just some thoughts for you, I know it's hard with little ones, don't you

> wish they could tell you what's wrong? It's frustrating.

>

>

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No, she didn't find any eos in the biopsies of his colon, but she is sticking to

her diagnosis of EC. He has no signs of allergy other than the high blood eos,

and the bloody, mucusy, green poop.

So, could you have high blood eos, and have no symptoms at all? i thought that

allergy is what causes the eosinophil level to be high.

What is the difference between EC, allergic colitis, and crohnins?

-Penny, bewildered and confused mom to philip 6.5 months, and andrew 4 yrs.

Steph wrote:

>

>

> penny-

>

> First of all, welcome.

>

> A copule of things come to mind. First, you don't say anything here about

> eosinophils actually being found in the colon? or on biopsies? That is the

> only definitive way to diagnose GI eosinophilic diseaes. Secondly, there is

> no proven correlation between peripheral (blood) eosinophilic levels and

> eosinophilic enteropathies. One can have huge elevations of eos in the

> blood and have none in the GI tract and visa-versa. Another thought is that

> if his weight is at 90%, something is obviously working REALLY WELL. does

> anyone else on the list have a kid diagnosed with eos disease whose weight

> was this good?

>

> if in fact, your son does have some form of eosinophilic enteropathy, the

> docs are right in suggesting Neocate, or one of the amino-acid based

> formulas. Your son is young enough that it would be worth trying to " force "

> the issue a bit and see if you can get him to take it. If not, and he does

> in fact have one of the forms of GI eos disease, he could end up having a

> tube for the formula and you don't want that if you can avoid it. Most of

> our kids were diagnosed later and the tubes became a necessity for them.

>

> I hope they come up with some answers for you. It sounds like there are a

> LOT of questions still unanswered. ONe has to wonder if you are dealing

> with some food sensitivities or allergies and not with eos disease at all.

> Time will certainly tell as the biopsies will show eos eventually if he does

> in fact have eos disease.

>

> Good luck and again, welcome.

>

> Steph.

>

> [eosinophilic gastroenteritis] intro

>

> >

> >

> >Hi,

> >My name is Penny. I'm a mom to age 4, and Philip age 6.5 months.

> > was born with a cleft palate. We had a terrible time feeding him,

> but

> >finally learned about the Haberman feeder. He had formula and breastmilk

> via

> >this bottle. I pumped for six months, but gave up when my " output " fell to

> less

> >that 4oz a day. He was fine on the formula, but developed lactose

> intolerance.

> >He also had a mystery food allergy for about a year which gave him hives.

> He

> >had surgery for the cleft at 11 months, and now is " only " allergic to cats

> and

> >mold.

> >My baby, Philip, developed green poop at 5.5 wks of age. He was

> exclusively

> >breastfed. I looked it up in various baby books, but all said that it was

> >normal, or didn't say anything at all. I even forgot to say something at

> >Philip's 2 month checkup. After we got home that day, I noticed some

> blood in

> >his poop, so I called the doctor. He told me to go off milk. I did, but

> after

> >2 wks, there was no improvement. So the doctor ordered stool cultures and

> blood

> >tests. The stool tests revealed blood (duh!) and the blood tests showed

> that

> >he was slightly anemic and had an eosinophils level at 13. (13 percent?)

> >anyway the doctor said that it was the highest that he had seen in a child

> under

> >2. He said to give it some more time. When he was three months, on my own

> I

> >went off soy, peanuts, fish, shellfish (never ate it anyway) and corn.

> Then a

> >week later I went off wheat, eggs, nuts, citrus, and tomato. For a while I

> went

> >off potato, but that left me with not much to eat when we are out and

> about.

> >After Christmas, when Philip was 4 months old, we went to see a pediatric

> >gastroenterologist. Blood tests revealed that he had eosinophils at 9, and

> was

> >only borderline anemic. She put him on iron and did a colonoscopy the next

> >day. He has a port wine stain around his ear, so she wanted to rule out

> one in

> >his colon. His colon looked pretty good. There were glands that looked

> >swollen, but no eosinophils. She still felt that he has eosinophilic

> colitis,

> >but that it is " partially treated " . I should also note that Philip has

> always

> >been 90% in weight, so she doesn't think he has any problems with his small

> >intestine. She also put me on pancreatic enzymes to help me digest

> protein. No

> >matter what I eliminate, he still seems to be the same. I do know how to

> make

> >it worse. Beans and chicken seem to be bad. I'm trying to eat less

> protein,

> >but it isn't helping much. I still see some blood in every diaper.

> >The doctor's recommendation was for me to wean Philip and put him on

> Neocate.

> >We last saw the doctor 6 wks ago. His eosinophils were still 9, but he is

> no

> >longer anemic, but has low iron stores (I think that's normal for his age.)

> At

> >that time the doctor really really wanted me to wean him, but we were

> leaving on

> >a trip in mid February, so she said to do it when we returned. Well we've

> been

> >trying to get him to take a bottle. He doesn't have a clue and he is only

> >slightly better with a sippy cup. The most that I've gotten into him is an

> >ounce. I was so thrilled to be able to finally breastfed a baby, and it

> was

> >going so well. The doctor thinks the only thing to do is make him go cold

> >turkey and starve him into accepting the Neocate. We have also started him

> on

> >rice cereal, as he was showing an interest in food. This may complicate

> things,

> >but I would think he would be a lot worse if he were reacting to rice.

> Actually

> >he doesn't seem to like the rice cereal much. It's pretty bad.

> >

> >-Penny

> >

> >

> >------------------------------------------------------------------------

> >GET A NEXTCARD VISA, in 30 seconds! Get rates as low as 0.0%

> >Intro or 9.9% Fixed APR and no hidden fees. Apply NOW!

> >http://click.egroups.com/1/937/4/_/474479/_/952629170/

> >------------------------------------------------------------------------

> >

> >

>

> __________________________________________________

>

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No, she didn't find any eos in the biopsies of his colon, but she is sticking to

her diagnosis of EC. He has no signs of allergy other than the high blood eos,

and the bloody, mucusy, green poop.

So, could you have high blood eos, and have no symptoms at all? i thought that

allergy is what causes the eosinophil level to be high.

What is the difference between EC, allergic colitis, and crohnins?

-Penny, bewildered and confused mom to philip 6.5 months, and andrew 4 yrs.

Steph wrote:

>

>

> penny-

>

> First of all, welcome.

>

> A copule of things come to mind. First, you don't say anything here about

> eosinophils actually being found in the colon? or on biopsies? That is the

> only definitive way to diagnose GI eosinophilic diseaes. Secondly, there is

> no proven correlation between peripheral (blood) eosinophilic levels and

> eosinophilic enteropathies. One can have huge elevations of eos in the

> blood and have none in the GI tract and visa-versa. Another thought is that

> if his weight is at 90%, something is obviously working REALLY WELL. does

> anyone else on the list have a kid diagnosed with eos disease whose weight

> was this good?

>

> if in fact, your son does have some form of eosinophilic enteropathy, the

> docs are right in suggesting Neocate, or one of the amino-acid based

> formulas. Your son is young enough that it would be worth trying to " force "

> the issue a bit and see if you can get him to take it. If not, and he does

> in fact have one of the forms of GI eos disease, he could end up having a

> tube for the formula and you don't want that if you can avoid it. Most of

> our kids were diagnosed later and the tubes became a necessity for them.

>

> I hope they come up with some answers for you. It sounds like there are a

> LOT of questions still unanswered. ONe has to wonder if you are dealing

> with some food sensitivities or allergies and not with eos disease at all.

> Time will certainly tell as the biopsies will show eos eventually if he does

> in fact have eos disease.

>

> Good luck and again, welcome.

>

> Steph.

>

> [eosinophilic gastroenteritis] intro

>

> >

> >

> >Hi,

> >My name is Penny. I'm a mom to age 4, and Philip age 6.5 months.

> > was born with a cleft palate. We had a terrible time feeding him,

> but

> >finally learned about the Haberman feeder. He had formula and breastmilk

> via

> >this bottle. I pumped for six months, but gave up when my " output " fell to

> less

> >that 4oz a day. He was fine on the formula, but developed lactose

> intolerance.

> >He also had a mystery food allergy for about a year which gave him hives.

> He

> >had surgery for the cleft at 11 months, and now is " only " allergic to cats

> and

> >mold.

> >My baby, Philip, developed green poop at 5.5 wks of age. He was

> exclusively

> >breastfed. I looked it up in various baby books, but all said that it was

> >normal, or didn't say anything at all. I even forgot to say something at

> >Philip's 2 month checkup. After we got home that day, I noticed some

> blood in

> >his poop, so I called the doctor. He told me to go off milk. I did, but

> after

> >2 wks, there was no improvement. So the doctor ordered stool cultures and

> blood

> >tests. The stool tests revealed blood (duh!) and the blood tests showed

> that

> >he was slightly anemic and had an eosinophils level at 13. (13 percent?)

> >anyway the doctor said that it was the highest that he had seen in a child

> under

> >2. He said to give it some more time. When he was three months, on my own

> I

> >went off soy, peanuts, fish, shellfish (never ate it anyway) and corn.

> Then a

> >week later I went off wheat, eggs, nuts, citrus, and tomato. For a while I

> went

> >off potato, but that left me with not much to eat when we are out and

> about.

> >After Christmas, when Philip was 4 months old, we went to see a pediatric

> >gastroenterologist. Blood tests revealed that he had eosinophils at 9, and

> was

> >only borderline anemic. She put him on iron and did a colonoscopy the next

> >day. He has a port wine stain around his ear, so she wanted to rule out

> one in

> >his colon. His colon looked pretty good. There were glands that looked

> >swollen, but no eosinophils. She still felt that he has eosinophilic

> colitis,

> >but that it is " partially treated " . I should also note that Philip has

> always

> >been 90% in weight, so she doesn't think he has any problems with his small

> >intestine. She also put me on pancreatic enzymes to help me digest

> protein. No

> >matter what I eliminate, he still seems to be the same. I do know how to

> make

> >it worse. Beans and chicken seem to be bad. I'm trying to eat less

> protein,

> >but it isn't helping much. I still see some blood in every diaper.

> >The doctor's recommendation was for me to wean Philip and put him on

> Neocate.

> >We last saw the doctor 6 wks ago. His eosinophils were still 9, but he is

> no

> >longer anemic, but has low iron stores (I think that's normal for his age.)

> At

> >that time the doctor really really wanted me to wean him, but we were

> leaving on

> >a trip in mid February, so she said to do it when we returned. Well we've

> been

> >trying to get him to take a bottle. He doesn't have a clue and he is only

> >slightly better with a sippy cup. The most that I've gotten into him is an

> >ounce. I was so thrilled to be able to finally breastfed a baby, and it

> was

> >going so well. The doctor thinks the only thing to do is make him go cold

> >turkey and starve him into accepting the Neocate. We have also started him

> on

> >rice cereal, as he was showing an interest in food. This may complicate

> things,

> >but I would think he would be a lot worse if he were reacting to rice.

> Actually

> >he doesn't seem to like the rice cereal much. It's pretty bad.

> >

> >-Penny

> >

> >

> >------------------------------------------------------------------------

> >GET A NEXTCARD VISA, in 30 seconds! Get rates as low as 0.0%

> >Intro or 9.9% Fixed APR and no hidden fees. Apply NOW!

> >http://click.egroups.com/1/937/4/_/474479/_/952629170/

> >------------------------------------------------------------------------

> >

> >

>

> __________________________________________________

>

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No, she didn't find any eos in the biopsies of his colon, but she is sticking to

her diagnosis of EC. He has no signs of allergy other than the high blood eos,

and the bloody, mucusy, green poop.

So, could you have high blood eos, and have no symptoms at all? i thought that

allergy is what causes the eosinophil level to be high.

What is the difference between EC, allergic colitis, and crohnins?

-Penny, bewildered and confused mom to philip 6.5 months, and andrew 4 yrs.

Steph wrote:

>

>

> penny-

>

> First of all, welcome.

>

> A copule of things come to mind. First, you don't say anything here about

> eosinophils actually being found in the colon? or on biopsies? That is the

> only definitive way to diagnose GI eosinophilic diseaes. Secondly, there is

> no proven correlation between peripheral (blood) eosinophilic levels and

> eosinophilic enteropathies. One can have huge elevations of eos in the

> blood and have none in the GI tract and visa-versa. Another thought is that

> if his weight is at 90%, something is obviously working REALLY WELL. does

> anyone else on the list have a kid diagnosed with eos disease whose weight

> was this good?

>

> if in fact, your son does have some form of eosinophilic enteropathy, the

> docs are right in suggesting Neocate, or one of the amino-acid based

> formulas. Your son is young enough that it would be worth trying to " force "

> the issue a bit and see if you can get him to take it. If not, and he does

> in fact have one of the forms of GI eos disease, he could end up having a

> tube for the formula and you don't want that if you can avoid it. Most of

> our kids were diagnosed later and the tubes became a necessity for them.

>

> I hope they come up with some answers for you. It sounds like there are a

> LOT of questions still unanswered. ONe has to wonder if you are dealing

> with some food sensitivities or allergies and not with eos disease at all.

> Time will certainly tell as the biopsies will show eos eventually if he does

> in fact have eos disease.

>

> Good luck and again, welcome.

>

> Steph.

>

> [eosinophilic gastroenteritis] intro

>

> >

> >

> >Hi,

> >My name is Penny. I'm a mom to age 4, and Philip age 6.5 months.

> > was born with a cleft palate. We had a terrible time feeding him,

> but

> >finally learned about the Haberman feeder. He had formula and breastmilk

> via

> >this bottle. I pumped for six months, but gave up when my " output " fell to

> less

> >that 4oz a day. He was fine on the formula, but developed lactose

> intolerance.

> >He also had a mystery food allergy for about a year which gave him hives.

> He

> >had surgery for the cleft at 11 months, and now is " only " allergic to cats

> and

> >mold.

> >My baby, Philip, developed green poop at 5.5 wks of age. He was

> exclusively

> >breastfed. I looked it up in various baby books, but all said that it was

> >normal, or didn't say anything at all. I even forgot to say something at

> >Philip's 2 month checkup. After we got home that day, I noticed some

> blood in

> >his poop, so I called the doctor. He told me to go off milk. I did, but

> after

> >2 wks, there was no improvement. So the doctor ordered stool cultures and

> blood

> >tests. The stool tests revealed blood (duh!) and the blood tests showed

> that

> >he was slightly anemic and had an eosinophils level at 13. (13 percent?)

> >anyway the doctor said that it was the highest that he had seen in a child

> under

> >2. He said to give it some more time. When he was three months, on my own

> I

> >went off soy, peanuts, fish, shellfish (never ate it anyway) and corn.

> Then a

> >week later I went off wheat, eggs, nuts, citrus, and tomato. For a while I

> went

> >off potato, but that left me with not much to eat when we are out and

> about.

> >After Christmas, when Philip was 4 months old, we went to see a pediatric

> >gastroenterologist. Blood tests revealed that he had eosinophils at 9, and

> was

> >only borderline anemic. She put him on iron and did a colonoscopy the next

> >day. He has a port wine stain around his ear, so she wanted to rule out

> one in

> >his colon. His colon looked pretty good. There were glands that looked

> >swollen, but no eosinophils. She still felt that he has eosinophilic

> colitis,

> >but that it is " partially treated " . I should also note that Philip has

> always

> >been 90% in weight, so she doesn't think he has any problems with his small

> >intestine. She also put me on pancreatic enzymes to help me digest

> protein. No

> >matter what I eliminate, he still seems to be the same. I do know how to

> make

> >it worse. Beans and chicken seem to be bad. I'm trying to eat less

> protein,

> >but it isn't helping much. I still see some blood in every diaper.

> >The doctor's recommendation was for me to wean Philip and put him on

> Neocate.

> >We last saw the doctor 6 wks ago. His eosinophils were still 9, but he is

> no

> >longer anemic, but has low iron stores (I think that's normal for his age.)

> At

> >that time the doctor really really wanted me to wean him, but we were

> leaving on

> >a trip in mid February, so she said to do it when we returned. Well we've

> been

> >trying to get him to take a bottle. He doesn't have a clue and he is only

> >slightly better with a sippy cup. The most that I've gotten into him is an

> >ounce. I was so thrilled to be able to finally breastfed a baby, and it

> was

> >going so well. The doctor thinks the only thing to do is make him go cold

> >turkey and starve him into accepting the Neocate. We have also started him

> on

> >rice cereal, as he was showing an interest in food. This may complicate

> things,

> >but I would think he would be a lot worse if he were reacting to rice.

> Actually

> >he doesn't seem to like the rice cereal much. It's pretty bad.

> >

> >-Penny

> >

> >

> >------------------------------------------------------------------------

> >GET A NEXTCARD VISA, in 30 seconds! Get rates as low as 0.0%

> >Intro or 9.9% Fixed APR and no hidden fees. Apply NOW!

> >http://click.egroups.com/1/937/4/_/474479/_/952629170/

> >------------------------------------------------------------------------

> >

> >

>

> __________________________________________________

>

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Penny-

When AJ was 5 months old and I tried to start food, I THOUGHT AJ was

begining to reject the breast. I thought it was something I was eating. I

thought all kinds of things. I stressed myself out so much because here I

am nursing and AJ was dropping ounces by the day. What guilt. It's the

old-if I only knew then what I know now. I did nurse her for 11 months, but

wished I never stopped. At least not until we had a diagnosis. AJ was

super stubborn and NEVER took a bottle. She would drink from a sippy cup at

4 months of age. I would give her something other than breast milk in it.

Neocate is one hard taste to get used to, so it might be a tough transition.

When is fully on it though, he will be getting everything he needs.

AJ's height and weight shot up after being on it. There is another mom on

the list, Shana, who is still nursing her 2 1/2 year old. It is the only

thing saving him. Some suggestions though-I would see if you could find a

pediatric allergist who will test . It was quite a challange and

couldn't find one until AJ was 9 months old. Eventually AJ tested postive

to 44 food allergies. But you are playing such a wild guessing game right

now. Also, some people don't even give their baby's food until 6 months.

He isn't losing weight, so I wouldn't be as concerned with food. This is

all my opinion of course and how looking back, I would have done things

differently. Good luck. Phyllis

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Hi Penny,

The difference between Crohn's, Allergic Colitis and EC is indistinguishable

based on symptoms alone, since all 3 can mimic one another. However, there

are certain features typically identifiable by bowel biopsy that can help

distinguish between them:

Crohn's is what I'm most familiar with, since I have it myself. It is

basically an inflammatory bowel disease that can affect any or all layers of

the digestive system wall (mucosa through to serosa) and can occur anywhere

from mouth to anus. White blood cell infiltrates (mostly polys, or

neutrophils) are common. Areas of inflammation are patchy - often there are

areas of diseased bowel inter-mixed with areas of healthy bowel. Most

common locations for Crohn's inflammation are rectal, terminal ileum, and

ascending colon.

I'm not entirely certain about the difference between EC and Allergic

Colitis, but if I had to take an educated guess, I'd say that Allergic

Colitis was colitis caused by an allergen (or multiple allergens) in which

the lesions and inflammation only affect the mucosa (and possibly

sub-mucosa) layer of the large bowel (which does not necessarily imply

eosinophilic infiltration). Colitis inflammation is typically continuous;

eosinophilic inflammation is typically more patchy in nature. EC is

eosinophilic infiltration of any one or more layers of the large bowel, and

there is not necessarily an identifiable causative food allergen (i.e., skin

tests may not corelate well with symptom observation on food challenge).

For more information:

http://home.beseen.com/community/razzle00/cdlinks.htm

http://home.beseen.com/community/razzle00/eg.htm

http://www.healingwell.com/ibd/

I hope this helps...

Take care,

-Joy

______________________________________________________

Get Your Private, Free Email at http://www.hotmail.com

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Hi Penny,

I don't have any Web sites about adding solid food for breast fed babies. I do have some experience. I nursed my oldest daughter for 20 months. I didn't give her solids until 11 months. I had planned to start at ten months, but my husband was in the military and we made a major move. When I did start solids, we did use the baby cereals, But for most everything else crushed table food. I think we started with bananas that we mashed up. We added pure foods first and eventually mixtures. I might add that she didn't get her first tooth until she was 13 months but could really gum things to death.

Good luck

Judy

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> Wow, what a great idea. I contacted Dr. Newman, and guess what, an e-mail

> was waiting for me this morning! What a terrific Dr. Doesn't it make you

> wonder, when these experts are easier to contact than your own family

> doctor! He gave me some things to try.

Oh, I'm so glad, Penny! Yes, he is AMAZING, and that is an

understatement, IMO. He has been a wonderful help to me and many other

women I know.

> Do you know of any good web links on introducing table food to breastfed

> babies?

Can you clarify - do you mean solids in general, as in pureed baby

foods, or table foods - gently mushed stuff that you (the parent) are eating?

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Noreen,

I'm sure others on this list will tell you that depression is a part of the

illness and that most MSA patients are on meds for depression.

Is your mother being cared for by neurologist familiar with MSA?

Jerry Cash

intro

Hello,

I'm a new member to this site. My mom was diagnosed with shy-

drager last Spring and she most likely has had it for 3 years. She is

only 60 years old. She is just really starting to learn what her

future may be like and she is very depressed. She had already

suffered from depression throughout her life and this diagnosis has

hit her very hard. As her adult daughter I am very concerned about

her and want to be as supportive as I can. I live 2 hours away from

her and am only able to visit once a month but we speak by phone

regularly.

Can anyone who has a parent with shy-drager share their

experiences as an adult child? Any helpful suggestions would be

appreciated. I am also trying to find out about support groups for

my mother and father to attend in the Central Massachusetts area.

I'd also like to find a support group for family members in Central

Connecticut.

Thank you much,Noreen

If you do not wish to belong to shydrager, you may

unsubscribe by sending a blank email to

shydrager-unsubscribe

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Noreen,

I'm sure others on this list will tell you that depression is a part of the

illness and that most MSA patients are on meds for depression.

Is your mother being cared for by neurologist familiar with MSA?

Jerry Cash

intro

Hello,

I'm a new member to this site. My mom was diagnosed with shy-

drager last Spring and she most likely has had it for 3 years. She is

only 60 years old. She is just really starting to learn what her

future may be like and she is very depressed. She had already

suffered from depression throughout her life and this diagnosis has

hit her very hard. As her adult daughter I am very concerned about

her and want to be as supportive as I can. I live 2 hours away from

her and am only able to visit once a month but we speak by phone

regularly.

Can anyone who has a parent with shy-drager share their

experiences as an adult child? Any helpful suggestions would be

appreciated. I am also trying to find out about support groups for

my mother and father to attend in the Central Massachusetts area.

I'd also like to find a support group for family members in Central

Connecticut.

Thank you much,Noreen

If you do not wish to belong to shydrager, you may

unsubscribe by sending a blank email to

shydrager-unsubscribe

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Hi, Noreen. Welcome, though I am sorry you are here. My mother Joyce Scaduto

(71, died 11/5/00 of complications) had MSA. She lived in NY and I live in

Mass. (my sister is in Conn.).

My main role in my mother's disease was to gather information. I tried to

attend doctor visits with her, but this became more and more difficult (my

sister was often able to go, though). When she got bad--bed and wheelchair

bound--the most important thing was just to be with her. This was not easy,

but we tried (even if it meant staying only overnight). When I was unable to

come for a stretch, I would make a video of my kids (the kind only a

grandparent could love) and send that. I had two young kids at the time, and

a dog (love of my life) dying of cancer. Heading for NY was not easy. I wish

I had done it more.

As for the depression, my mom, who was never depressed in her life, was on

Zoloft and felt that it helped in some way.

There is a group that meets in Lexington. Their meetings are posted on this

list. Where are your parents in Central Mass? I am in W. Townsend. I know

you don't know me, but perhaps I can help in some way.

Staying with this list is important. You will learn a lot. Debbie

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Dear Noreen,

Welcome to the group. I am also the adult child of a parent with MSA. My

dad has been afflicted for probably more than ten years at this point

(although he received his diagnosis in 1998).

You asked for suggestions on how to help. I have tried to give my parents

information that I get from this group. Through this group we learned of a

local support group that my mom attends. I try to pass on the emails that

seem relevant to their situation, and I always pass on the jokes! I have

learned to not nag too much, to investigate equipment options, and try to

just be supportive. It is hard and frustrating to be away so I hope that my

participation this way helps them. Most of the time it feels like way too

little, but I don't know what else to do.

Good luck to you and your mom. I know you will learn a lot here.

Cindy

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Dear Noreen,

Welcome to the group. I am also the adult child of a parent with MSA. My

dad has been afflicted for probably more than ten years at this point

(although he received his diagnosis in 1998).

You asked for suggestions on how to help. I have tried to give my parents

information that I get from this group. Through this group we learned of a

local support group that my mom attends. I try to pass on the emails that

seem relevant to their situation, and I always pass on the jokes! I have

learned to not nag too much, to investigate equipment options, and try to

just be supportive. It is hard and frustrating to be away so I hope that my

participation this way helps them. Most of the time it feels like way too

little, but I don't know what else to do.

Good luck to you and your mom. I know you will learn a lot here.

Cindy

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Dear Noreen,

Welcome to the group. I am also the adult child of a parent with MSA. My

dad has been afflicted for probably more than ten years at this point

(although he received his diagnosis in 1998).

You asked for suggestions on how to help. I have tried to give my parents

information that I get from this group. Through this group we learned of a

local support group that my mom attends. I try to pass on the emails that

seem relevant to their situation, and I always pass on the jokes! I have

learned to not nag too much, to investigate equipment options, and try to

just be supportive. It is hard and frustrating to be away so I hope that my

participation this way helps them. Most of the time it feels like way too

little, but I don't know what else to do.

Good luck to you and your mom. I know you will learn a lot here.

Cindy

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Noreen,

Hello and welcome to the group. My husband Rob (dx SDS/MSA 3/98) and

I live in Lexington, MA. There is a support group that meets here in

Lexington every couple of months. You can see the notes fro the last

couple of meeting under the " files " section of the main Yahoo Shy-

Drager page - look under US Support groups.

If at all possible, I suggest that you and your mother attned tha

national meeting that will be help May 3-5 in Boston. It will be

very informative and a good chance to meet others with MSA. You can

check out this site for more info: www.shy-drager.com .

Carol & Rob

> Hello,

> I'm a new member to this site. My mom was diagnosed with shy-

> drager last Spring and she most likely has had it for 3 years. She

is

> only 60 years old. She is just really starting to learn what her

> future may be like and she is very depressed. She had already

> suffered from depression throughout her life and this diagnosis has

> hit her very hard. As her adult daughter I am very concerned about

> her and want to be as supportive as I can. I live 2 hours away

from

> her and am only able to visit once a month but we speak by phone

> regularly.

> Can anyone who has a parent with shy-drager share their

> experiences as an adult child? Any helpful suggestions would be

> appreciated. I am also trying to find out about support groups for

> my mother and father to attend in the Central Massachusetts area.

> I'd also like to find a support group for family members in Central

> Connecticut.

> Thank you much,Noreen

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Noreen,

Hello and welcome to the group. My husband Rob (dx SDS/MSA 3/98) and

I live in Lexington, MA. There is a support group that meets here in

Lexington every couple of months. You can see the notes fro the last

couple of meeting under the " files " section of the main Yahoo Shy-

Drager page - look under US Support groups.

If at all possible, I suggest that you and your mother attned tha

national meeting that will be help May 3-5 in Boston. It will be

very informative and a good chance to meet others with MSA. You can

check out this site for more info: www.shy-drager.com .

Carol & Rob

> Hello,

> I'm a new member to this site. My mom was diagnosed with shy-

> drager last Spring and she most likely has had it for 3 years. She

is

> only 60 years old. She is just really starting to learn what her

> future may be like and she is very depressed. She had already

> suffered from depression throughout her life and this diagnosis has

> hit her very hard. As her adult daughter I am very concerned about

> her and want to be as supportive as I can. I live 2 hours away

from

> her and am only able to visit once a month but we speak by phone

> regularly.

> Can anyone who has a parent with shy-drager share their

> experiences as an adult child? Any helpful suggestions would be

> appreciated. I am also trying to find out about support groups for

> my mother and father to attend in the Central Massachusetts area.

> I'd also like to find a support group for family members in Central

> Connecticut.

> Thank you much,Noreen

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Noreen,

Hello and welcome to the group. My husband Rob (dx SDS/MSA 3/98) and

I live in Lexington, MA. There is a support group that meets here in

Lexington every couple of months. You can see the notes fro the last

couple of meeting under the " files " section of the main Yahoo Shy-

Drager page - look under US Support groups.

If at all possible, I suggest that you and your mother attned tha

national meeting that will be help May 3-5 in Boston. It will be

very informative and a good chance to meet others with MSA. You can

check out this site for more info: www.shy-drager.com .

Carol & Rob

> Hello,

> I'm a new member to this site. My mom was diagnosed with shy-

> drager last Spring and she most likely has had it for 3 years. She

is

> only 60 years old. She is just really starting to learn what her

> future may be like and she is very depressed. She had already

> suffered from depression throughout her life and this diagnosis has

> hit her very hard. As her adult daughter I am very concerned about

> her and want to be as supportive as I can. I live 2 hours away

from

> her and am only able to visit once a month but we speak by phone

> regularly.

> Can anyone who has a parent with shy-drager share their

> experiences as an adult child? Any helpful suggestions would be

> appreciated. I am also trying to find out about support groups for

> my mother and father to attend in the Central Massachusetts area.

> I'd also like to find a support group for family members in Central

> Connecticut.

> Thank you much,Noreen

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Hi ,

there are several moms with half a dozen kids on the list, so you

won't feel alone :-))

The timing for the dx is really bad (if there is a good time for the

dx at all), so I keep my fingers crossed that your baby to be won't

have CF too. As for anything else, you've said it already, it's a lot

to get used too. Feel free to ask any questions as they arise.

I have two questions, how old is your child with CF and how is the

weather on Hawaii?

Peace

Torsten, dad of Fiona 5wcf

> Hi, My name is I have 5 children and one on the way and

> recently found out my youngest has CF. We just started all the

> ultrase, and adek, Alot to get use too. At first I was very upset

> that my daughter has cf now I'm trying to move on and get things

> started so she gains weight and gets healthier. Thanks

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