VENTING

[Guest guest]

I'm sorry to have to vent to you guys BUT...

Now we are fighting over formula again. Our insurance case manager promises

(again) that she will make sure we get it.... remember the problems I had

with the RX with my last case of formula?

I called a new pharmacy (the one that is ordering my tube) and asked if they

could get the Elecare quickly as I only have 2 more days worth. They said

no, it would take quite some time, evidently they are having a problem

getting reimbursed from CHAMPUS. WELL...wonder if that's why my previous

pharmacy held on to it so tightly?????

MEANWHILE, guess who is stuck in the middle? If they keep screwing around,

my GI WILL throw his hands up and say hell with it, place a central line...

his line is,.. my health is not worth it and he will not allow me to spiral

down like I have in the past. Its easier to keep me healthy than to let me

go down and try to bring me back up. This is SO STUPID. If they would

fight hard enough, they could save the thousands and thousands of dollars

TPN initiation will cost. This really should be illegal. At this point I'm

considering my congressman.

Steph.

[Guest guest]

Steph:

Vent away. Hope you got the insurance mess taken care of/ Luckily for us the

our medical supply company orders the formula and deleviers it and bills the

insurance company - I newer see the actual bill - only the insurance company

forms that they send me showing how much they have paid.

Keep us posted.

Love,

Sharon

[Guest guest]

In light of all you’ve described, I do not understand why you

won’t get on LDN, and as soon as possible, the more so when the

alternative is Humira.

I suggest you sign up for the yahoo LDN list and talk with other

people there who are on it, and some who have been on it a long time.

I’ve had Crohn’s for 30 years, have had two surgeries; had

active Crohn’s when I started LDN and the diet at the beginning of the year;

and three months later my blood work was almost entirely normal. I currently

have some minor periodic aching in my right side (that had previously

subsided). It may be something I’m eating that’s irritating my gut. The diet

has helped, but I wouldn’t be where I am on that alone. The LDN has helped/is

helping me tremendously, including – the best part – having given me a great

surge of energy (I previously had constant debilitating fatigue) and also

improving my allergies, asthma and arthritis.

I guess I don’t “get” your reluctance to use LDN. If your

gastroenterologist is so good, why isn’t he supporting you re: the diet. And

why won’t he prescribe LDN? He may be a nice person but he sounds like the

typical conventional, not very open-minded doctor who’s used to doing things the

way he’s been taught and won’t consider anything else. It sounds to me like

you’d be better off with your open-minded GP.

n

From:

BTVC-SCD [mailto:BTVC-SCD ] On Behalf Of Rhonda

Roman

Sent: Saturday, August 29, 2009 10:33 PM

To: BTVC-SCD

Subject: Venting

I'm so confused I don't even know where to start... ugh. Ok... The

diet seems to be going well. I know I feel better and hasn't

complained of pain in his bowels in well over a month. I thought I should

take him in for a check with his GI doc. I was so SURE everything was

going to be awesome aside from that stupid second fistula. The doc

requested blood work and I was even happier, because in the blood work would be

the proof that was improving. I could wave it high in the air and

show his GI that SCD was saving us. What do they say about pride?

*sigh*

Well, they say pride comes before the fall. 's C-Reactive Proteins

are at 5.2 (high), his sed rate is at 14 (borderline high), his glucose is at

109 (high), his Total Protein is 8.3 (high), his Globulin is 3.8 (high), his

Bilirubin is 1.3 (high), his Alkaline Phosphates are 40 (low) and his iron is

25 (low). On top of that he'd lost 7 pounds in the 4 months since the

last visit... and our lovely GI who has been with since he was 12 is not

excited about SCD at all. He thinks that most people lose weight on

it. So... He wants to start back on meds. He's thinking

Humira with 6mp. I reminded him that the last time was on 6mp his

liver failed... so that came off of the table, but he's really pushing for the

Humira, or as an alternative, testing to see if he can go back on

Remicade. He also put him on an antibiotic for the fistulas.

(UGH)

When was on Remicade he began having to do school through the " home

hospital " program. Three days at school meant a month home sick and

the teachers couldn't/wouldn't put together work for him. On one

occasion he was at school for a few days, then didn't feel well. I kept

him home and he progressively got worse. I took him to Children's where

we learned he had managed to catch Mono and Pneumonia. It was in the

hospital that his liver failed. The teachers were going to give him

" C's " for the year... and I flipped out like only a mother on the

edge can. Granted, the Remicade stopped the 5 pounds a week weight loss,

and without that I wouldn't have with me. He spent many nights at

Children's with that tube feeding him just to keep him with us. He was

just starting to consider spending next year.. his Senior year, at school with

other kids. Humira would end that. Of course, at the moment he

weighs 136 pounds and is 6 feet tall... so much more weight loss and we'll be

back to the hospital anyway.

Then there's the option of the LDN which seems to be highly recommended by many

people on this board. If he absolutely has to be on drugs to turn himself

around, that would be my preference. I know, without a shadow of a doubt,

we would lose the GI we've come to adore if we go that route. I could

very likely get my GP to prescribe it. He's always been very flexible and

has cared for the family for 15 years now, so he knows I'm not a loon and I

think things through.

What I've done so far is to send 's GI an email stating that we are

standing by the diet and would like to check back with him in a month for

another check. He's stated that he believes 's Crohn's is focusing

on his peri-rectal area and that he's very concerned, but that he'll wait to

set up the Humira and see us in a month. I don't know if I'm doing the

right thing. I don't feel like I can get to eat enough. He

just will not snack. He has developed a love for fruit-yogurt smoothies,

so I make his yogurt with 1/2 and 1/2 to get as many calories into it as

possible. I am trying to really push the yogurt since he's on the

antibiotics. I'm having the first stomach pain since starting this

diet... gads.. wonder if it's stress related?

I did finally manage to make the enchiladas. I bought a crepe maker and

that made all the difference in the world for me. I think they came out

great. Sadly, had a few bites, and said he was full. Today I

had Dad throw steaks on the grill. The one thing he'll eat anytime.

He ate a nice big steak, but I can't buy him steaks every day.

Ok. Vent complete. Thanks for reading.

Rhonda UC

Son, 16, CD

SCD 2+ months

No virus

found in this incoming message.

Checked by AVG - www.avg.com

Version: 8.5.409 / Virus Database: 270.13.71/2333 - Release Date: 08/29/09 06:39:00

[Guest guest]

In light of all you’ve described, I do not understand why you

won’t get on LDN, and as soon as possible, the more so when the

alternative is Humira.

I suggest you sign up for the yahoo LDN list and talk with other

people there who are on it, and some who have been on it a long time.

I’ve had Crohn’s for 30 years, have had two surgeries; had

active Crohn’s when I started LDN and the diet at the beginning of the year;

and three months later my blood work was almost entirely normal. I currently

have some minor periodic aching in my right side (that had previously

subsided). It may be something I’m eating that’s irritating my gut. The diet

has helped, but I wouldn’t be where I am on that alone. The LDN has helped/is

helping me tremendously, including – the best part – having given me a great

surge of energy (I previously had constant debilitating fatigue) and also

improving my allergies, asthma and arthritis.

I guess I don’t “get” your reluctance to use LDN. If your

gastroenterologist is so good, why isn’t he supporting you re: the diet. And

why won’t he prescribe LDN? He may be a nice person but he sounds like the

typical conventional, not very open-minded doctor who’s used to doing things the

way he’s been taught and won’t consider anything else. It sounds to me like

you’d be better off with your open-minded GP.

n

From:

BTVC-SCD [mailto:BTVC-SCD ] On Behalf Of Rhonda

Roman

Sent: Saturday, August 29, 2009 10:33 PM

To: BTVC-SCD

Subject: Venting

I'm so confused I don't even know where to start... ugh. Ok... The

diet seems to be going well. I know I feel better and hasn't

complained of pain in his bowels in well over a month. I thought I should

take him in for a check with his GI doc. I was so SURE everything was

going to be awesome aside from that stupid second fistula. The doc

requested blood work and I was even happier, because in the blood work would be

the proof that was improving. I could wave it high in the air and

show his GI that SCD was saving us. What do they say about pride?

*sigh*

Well, they say pride comes before the fall. 's C-Reactive Proteins

are at 5.2 (high), his sed rate is at 14 (borderline high), his glucose is at

109 (high), his Total Protein is 8.3 (high), his Globulin is 3.8 (high), his

Bilirubin is 1.3 (high), his Alkaline Phosphates are 40 (low) and his iron is

25 (low). On top of that he'd lost 7 pounds in the 4 months since the

last visit... and our lovely GI who has been with since he was 12 is not

excited about SCD at all. He thinks that most people lose weight on

it. So... He wants to start back on meds. He's thinking

Humira with 6mp. I reminded him that the last time was on 6mp his

liver failed... so that came off of the table, but he's really pushing for the

Humira, or as an alternative, testing to see if he can go back on

Remicade. He also put him on an antibiotic for the fistulas.

(UGH)

When was on Remicade he began having to do school through the " home

hospital " program. Three days at school meant a month home sick and

the teachers couldn't/wouldn't put together work for him. On one

occasion he was at school for a few days, then didn't feel well. I kept

him home and he progressively got worse. I took him to Children's where

we learned he had managed to catch Mono and Pneumonia. It was in the

hospital that his liver failed. The teachers were going to give him

" C's " for the year... and I flipped out like only a mother on the

edge can. Granted, the Remicade stopped the 5 pounds a week weight loss,

and without that I wouldn't have with me. He spent many nights at

Children's with that tube feeding him just to keep him with us. He was

just starting to consider spending next year.. his Senior year, at school with

other kids. Humira would end that. Of course, at the moment he

weighs 136 pounds and is 6 feet tall... so much more weight loss and we'll be

back to the hospital anyway.

Then there's the option of the LDN which seems to be highly recommended by many

people on this board. If he absolutely has to be on drugs to turn himself

around, that would be my preference. I know, without a shadow of a doubt,

we would lose the GI we've come to adore if we go that route. I could

very likely get my GP to prescribe it. He's always been very flexible and

has cared for the family for 15 years now, so he knows I'm not a loon and I

think things through.

What I've done so far is to send 's GI an email stating that we are

standing by the diet and would like to check back with him in a month for

another check. He's stated that he believes 's Crohn's is focusing

on his peri-rectal area and that he's very concerned, but that he'll wait to

set up the Humira and see us in a month. I don't know if I'm doing the

right thing. I don't feel like I can get to eat enough. He

just will not snack. He has developed a love for fruit-yogurt smoothies,

so I make his yogurt with 1/2 and 1/2 to get as many calories into it as

possible. I am trying to really push the yogurt since he's on the

antibiotics. I'm having the first stomach pain since starting this

diet... gads.. wonder if it's stress related?

I did finally manage to make the enchiladas. I bought a crepe maker and

that made all the difference in the world for me. I think they came out

great. Sadly, had a few bites, and said he was full. Today I

had Dad throw steaks on the grill. The one thing he'll eat anytime.

He ate a nice big steak, but I can't buy him steaks every day.

Ok. Vent complete. Thanks for reading.

Rhonda UC

Son, 16, CD

SCD 2+ months

No virus

found in this incoming message.

Checked by AVG - www.avg.com

Version: 8.5.409 / Virus Database: 270.13.71/2333 - Release Date: 08/29/09 06:39:00

[Guest guest]

In light of all you’ve described, I do not understand why you

won’t get on LDN, and as soon as possible, the more so when the

alternative is Humira.

I suggest you sign up for the yahoo LDN list and talk with other

people there who are on it, and some who have been on it a long time.

I’ve had Crohn’s for 30 years, have had two surgeries; had

active Crohn’s when I started LDN and the diet at the beginning of the year;

and three months later my blood work was almost entirely normal. I currently

have some minor periodic aching in my right side (that had previously

subsided). It may be something I’m eating that’s irritating my gut. The diet

has helped, but I wouldn’t be where I am on that alone. The LDN has helped/is

helping me tremendously, including – the best part – having given me a great

surge of energy (I previously had constant debilitating fatigue) and also

improving my allergies, asthma and arthritis.

I guess I don’t “get” your reluctance to use LDN. If your

gastroenterologist is so good, why isn’t he supporting you re: the diet. And

why won’t he prescribe LDN? He may be a nice person but he sounds like the

typical conventional, not very open-minded doctor who’s used to doing things the

way he’s been taught and won’t consider anything else. It sounds to me like

you’d be better off with your open-minded GP.

n

From:

BTVC-SCD [mailto:BTVC-SCD ] On Behalf Of Rhonda

Roman

Sent: Saturday, August 29, 2009 10:33 PM

To: BTVC-SCD

Subject: Venting

I'm so confused I don't even know where to start... ugh. Ok... The

diet seems to be going well. I know I feel better and hasn't

complained of pain in his bowels in well over a month. I thought I should

take him in for a check with his GI doc. I was so SURE everything was

going to be awesome aside from that stupid second fistula. The doc

requested blood work and I was even happier, because in the blood work would be

the proof that was improving. I could wave it high in the air and

show his GI that SCD was saving us. What do they say about pride?

*sigh*

Well, they say pride comes before the fall. 's C-Reactive Proteins

are at 5.2 (high), his sed rate is at 14 (borderline high), his glucose is at

109 (high), his Total Protein is 8.3 (high), his Globulin is 3.8 (high), his

Bilirubin is 1.3 (high), his Alkaline Phosphates are 40 (low) and his iron is

25 (low). On top of that he'd lost 7 pounds in the 4 months since the

last visit... and our lovely GI who has been with since he was 12 is not

excited about SCD at all. He thinks that most people lose weight on

it. So... He wants to start back on meds. He's thinking

Humira with 6mp. I reminded him that the last time was on 6mp his

liver failed... so that came off of the table, but he's really pushing for the

Humira, or as an alternative, testing to see if he can go back on

Remicade. He also put him on an antibiotic for the fistulas.

(UGH)

When was on Remicade he began having to do school through the " home

hospital " program. Three days at school meant a month home sick and

the teachers couldn't/wouldn't put together work for him. On one

occasion he was at school for a few days, then didn't feel well. I kept

him home and he progressively got worse. I took him to Children's where

we learned he had managed to catch Mono and Pneumonia. It was in the

hospital that his liver failed. The teachers were going to give him

" C's " for the year... and I flipped out like only a mother on the

edge can. Granted, the Remicade stopped the 5 pounds a week weight loss,

and without that I wouldn't have with me. He spent many nights at

Children's with that tube feeding him just to keep him with us. He was

just starting to consider spending next year.. his Senior year, at school with

other kids. Humira would end that. Of course, at the moment he

weighs 136 pounds and is 6 feet tall... so much more weight loss and we'll be

back to the hospital anyway.

Then there's the option of the LDN which seems to be highly recommended by many

people on this board. If he absolutely has to be on drugs to turn himself

around, that would be my preference. I know, without a shadow of a doubt,

we would lose the GI we've come to adore if we go that route. I could

very likely get my GP to prescribe it. He's always been very flexible and

has cared for the family for 15 years now, so he knows I'm not a loon and I

think things through.

What I've done so far is to send 's GI an email stating that we are

standing by the diet and would like to check back with him in a month for

another check. He's stated that he believes 's Crohn's is focusing

on his peri-rectal area and that he's very concerned, but that he'll wait to

set up the Humira and see us in a month. I don't know if I'm doing the

right thing. I don't feel like I can get to eat enough. He

just will not snack. He has developed a love for fruit-yogurt smoothies,

so I make his yogurt with 1/2 and 1/2 to get as many calories into it as

possible. I am trying to really push the yogurt since he's on the

antibiotics. I'm having the first stomach pain since starting this

diet... gads.. wonder if it's stress related?

I did finally manage to make the enchiladas. I bought a crepe maker and

that made all the difference in the world for me. I think they came out

great. Sadly, had a few bites, and said he was full. Today I

had Dad throw steaks on the grill. The one thing he'll eat anytime.

He ate a nice big steak, but I can't buy him steaks every day.

Ok. Vent complete. Thanks for reading.

Rhonda UC

Son, 16, CD

SCD 2+ months

No virus

found in this incoming message.

Checked by AVG - www.avg.com

Version: 8.5.409 / Virus Database: 270.13.71/2333 - Release Date: 08/29/09 06:39:00

[Guest guest]

Hi Rhonda-

From reading this, it looks like both you and are feeling better- after

only 2 months on SCD. When I read BTVS, my interpretation was that this was a

long tern commitment- at least 2 years. When reading the stories of people on

SCD- like the authors of some of the SCD cookbooks, I realized that they had

also been on the diet for a long time. Eventually some of them did stop their

medication, but it seems that they did this after being symptom- free for a long

time as well. I am still just a " newbie " here myself, but I think this diet is a

long term process.

I think it would be too soon for everything to be " normal " after 2 months. It is

encouraging that is feeling better, but, he was quite sick to begin with.

Are these lab results worse than before he was on the diet? Is he getting better

or sicker? Is he on any medication at all?

I think the diet has helped a lot of people, but over time.

PJ

>

> I'm so confused I don't even know where to start... ugh. Ok... The diet

> seems to be going well. I know I feel better and hasn't complained

> of pain in his bowels in well over a month. I thought I should take him in

> for a check with his GI doc. I was so SURE everything was going to be

> awesome aside from that stupid second fistula. The doc requested blood

> work and I was even happier, because in the blood work would be the proof

> that was improving. I could wave it high in the air and show his GI

> that SCD was saving us. What do they say about pride? *sigh*

>

> Well, they say pride comes before the fall. 's C-Reactive Proteins

> are at 5.2 (high), his sed rate is at 14 (borderline high), his glucose is

> at 109 (high), his Total Protein is 8.3 (high), his Globulin is 3.8 (high),

> his Bilirubin is 1.3 (high), his Alkaline Phosphates are 40 (low) and his

> iron is 25 (low). On top of that he'd lost 7 pounds in the 4 months since

> the last visit... and our lovely GI who has been with since he was 12

> is not excited about SCD at all. He thinks that most people lose weight on

> it. So... He wants to start back on meds. He's thinking Humira with

> 6mp. I reminded him that the last time was on 6mp his liver

> failed... so that came off of the table, but he's really pushing for the

> Humira, or as an alternative, testing to see if he can go back on

> Remicade. He also put him on an antibiotic for the fistulas. (UGH)

>

> When was on Remicade he began having to do school through the " home

> hospital " program. Three days at school meant a month home sick and the

> teachers couldn't/wouldn't put together work for him. On one occasion he

> was at school for a few days, then didn't feel well. I kept him home and

> he progressively got worse. I took him to Children's where we learned he

> had managed to catch Mono and Pneumonia. It was in the hospital that his

> liver failed. The teachers were going to give him " C's " for the year... and

> I flipped out like only a mother on the edge can. Granted, the Remicade

> stopped the 5 pounds a week weight loss, and without that I wouldn't have

> with me. He spent many nights at Children's with that tube feeding

> him just to keep him with us. He was just starting to consider spending

> next year.. his Senior year, at school with other kids. Humira would end

> that. Of course, at the moment he weighs 136 pounds and is 6 feet tall...

> so much more weight loss and we'll be back to the hospital anyway.

>

> Then there's the option of the LDN which seems to be highly recommended by

> many people on this board. If he absolutely has to be on drugs to turn

> himself around, that would be my preference. I know, without a shadow of a

> doubt, we would lose the GI we've come to adore if we go that route. I

> could very likely get my GP to prescribe it. He's always been very

> flexible and has cared for the family for 15 years now, so he knows I'm not

> a loon and I think things through.

>

> What I've done so far is to send 's GI an email stating that we are

> standing by the diet and would like to check back with him in a month for

> another check. He's stated that he believes 's Crohn's is focusing on

> his peri-rectal area and that he's very concerned, but that he'll wait to

> set up the Humira and see us in a month. I don't know if I'm doing the

> right thing. I don't feel like I can get to eat enough. He just

> will not snack. He has developed a love for fruit-yogurt smoothies, so I

> make his yogurt with 1/2 and 1/2 to get as many calories into it as

> possible. I am trying to really push the yogurt since he's on the

> antibiotics. I'm having the first stomach pain since starting this diet...

> gads.. wonder if it's stress related?

>

> I did finally manage to make the enchiladas. I bought a crepe maker and

> that made all the difference in the world for me. I think they came out

> great. Sadly, had a few bites, and said he was full. Today I had

> Dad throw steaks on the grill. The one thing he'll eat anytime. He ate a

> nice big steak, but I can't buy him steaks every day.

>

> Ok. Vent complete. Thanks for reading.

>

> Rhonda UC

> Son, 16, CD

> SCD 2+ months

>

[Guest guest]

Hi Rhonda-

From reading this, it looks like both you and are feeling better- after

only 2 months on SCD. When I read BTVS, my interpretation was that this was a

long tern commitment- at least 2 years. When reading the stories of people on

SCD- like the authors of some of the SCD cookbooks, I realized that they had

also been on the diet for a long time. Eventually some of them did stop their

medication, but it seems that they did this after being symptom- free for a long

time as well. I am still just a " newbie " here myself, but I think this diet is a

long term process.

I think it would be too soon for everything to be " normal " after 2 months. It is

encouraging that is feeling better, but, he was quite sick to begin with.

Are these lab results worse than before he was on the diet? Is he getting better

or sicker? Is he on any medication at all?

I think the diet has helped a lot of people, but over time.

PJ

>

> I'm so confused I don't even know where to start... ugh. Ok... The diet

> seems to be going well. I know I feel better and hasn't complained

> of pain in his bowels in well over a month. I thought I should take him in

> for a check with his GI doc. I was so SURE everything was going to be

> awesome aside from that stupid second fistula. The doc requested blood

> work and I was even happier, because in the blood work would be the proof

> that was improving. I could wave it high in the air and show his GI

> that SCD was saving us. What do they say about pride? *sigh*

>

> Well, they say pride comes before the fall. 's C-Reactive Proteins

> are at 5.2 (high), his sed rate is at 14 (borderline high), his glucose is

> at 109 (high), his Total Protein is 8.3 (high), his Globulin is 3.8 (high),

> his Bilirubin is 1.3 (high), his Alkaline Phosphates are 40 (low) and his

> iron is 25 (low). On top of that he'd lost 7 pounds in the 4 months since

> the last visit... and our lovely GI who has been with since he was 12

> is not excited about SCD at all. He thinks that most people lose weight on

> it. So... He wants to start back on meds. He's thinking Humira with

> 6mp. I reminded him that the last time was on 6mp his liver

> failed... so that came off of the table, but he's really pushing for the

> Humira, or as an alternative, testing to see if he can go back on

> Remicade. He also put him on an antibiotic for the fistulas. (UGH)

>

> When was on Remicade he began having to do school through the " home

> hospital " program. Three days at school meant a month home sick and the

> teachers couldn't/wouldn't put together work for him. On one occasion he

> was at school for a few days, then didn't feel well. I kept him home and

> he progressively got worse. I took him to Children's where we learned he

> had managed to catch Mono and Pneumonia. It was in the hospital that his

> liver failed. The teachers were going to give him " C's " for the year... and

> I flipped out like only a mother on the edge can. Granted, the Remicade

> stopped the 5 pounds a week weight loss, and without that I wouldn't have

> with me. He spent many nights at Children's with that tube feeding

> him just to keep him with us. He was just starting to consider spending

> next year.. his Senior year, at school with other kids. Humira would end

> that. Of course, at the moment he weighs 136 pounds and is 6 feet tall...

> so much more weight loss and we'll be back to the hospital anyway.

>

> Then there's the option of the LDN which seems to be highly recommended by

> many people on this board. If he absolutely has to be on drugs to turn

> himself around, that would be my preference. I know, without a shadow of a

> doubt, we would lose the GI we've come to adore if we go that route. I

> could very likely get my GP to prescribe it. He's always been very

> flexible and has cared for the family for 15 years now, so he knows I'm not

> a loon and I think things through.

>

> What I've done so far is to send 's GI an email stating that we are

> standing by the diet and would like to check back with him in a month for

> another check. He's stated that he believes 's Crohn's is focusing on

> his peri-rectal area and that he's very concerned, but that he'll wait to

> set up the Humira and see us in a month. I don't know if I'm doing the

> right thing. I don't feel like I can get to eat enough. He just

> will not snack. He has developed a love for fruit-yogurt smoothies, so I

> make his yogurt with 1/2 and 1/2 to get as many calories into it as

> possible. I am trying to really push the yogurt since he's on the

> antibiotics. I'm having the first stomach pain since starting this diet...

> gads.. wonder if it's stress related?

>

> I did finally manage to make the enchiladas. I bought a crepe maker and

> that made all the difference in the world for me. I think they came out

> great. Sadly, had a few bites, and said he was full. Today I had

> Dad throw steaks on the grill. The one thing he'll eat anytime. He ate a

> nice big steak, but I can't buy him steaks every day.

>

> Ok. Vent complete. Thanks for reading.

>

> Rhonda UC

> Son, 16, CD

> SCD 2+ months

>

[Guest guest]

Hi PJ,

I agree, the diet takes time. I was just hoping that the tests

would reflect how well we have been feeling compared to pre-SCD.

was off of all meds for the last year, but he's been

symptomatic. I knew something was brewing to make a comeback, if

you know what I mean. Tummy aches becoming a regular thing instead

of occasional, etc. When we saw his GI 4 months ago his labs were

good, but he was symptomatic. Now that he's not, the labs are

cruddy. At the moment he's just on the anti-biotics for his

fistulas, multi-vitamin, calcium and B complex.

I'm not giving up on the diet. The entire family, including hubby

who was negative and resentful of the diet at first agree that the diet

stays. Hubby at least has seen the improvement and perhaps my

cooking is improving. *smile* I just wish we'd started this

years ago.

Rhonda UC

Son, 16, CD

SCD 2+ months

Hi Rhonda-

From reading this, it looks like both you and are feeling better-

after only 2 months on SCD. When I read BTVS, my interpretation was that

this was a long tern commitment- at least 2 years. When reading the

stories of people on SCD- like the authors of some of the SCD cookbooks,

I realized that they had also been on the diet for a long time.

Eventually some of them did stop their medication, but it seems that they

did this after being symptom- free for a long time as well. I am still

just a " newbie " here myself, but I think this diet is a long

term process.

I think it would be too soon for everything to be " normal "

after 2 months. It is encouraging that is feeling better, but, he

was quite sick to begin with. Are these lab results worse than before he

was on the diet? Is he getting better or sicker? Is he on any medication

at all?

I think the diet has helped a lot of people, but over time.

PJ

[Guest guest]

Hi PJ,

I agree, the diet takes time. I was just hoping that the tests

would reflect how well we have been feeling compared to pre-SCD.

was off of all meds for the last year, but he's been

symptomatic. I knew something was brewing to make a comeback, if

you know what I mean. Tummy aches becoming a regular thing instead

of occasional, etc. When we saw his GI 4 months ago his labs were

good, but he was symptomatic. Now that he's not, the labs are

cruddy. At the moment he's just on the anti-biotics for his

fistulas, multi-vitamin, calcium and B complex.

I'm not giving up on the diet. The entire family, including hubby

who was negative and resentful of the diet at first agree that the diet

stays. Hubby at least has seen the improvement and perhaps my

cooking is improving. *smile* I just wish we'd started this

years ago.

Rhonda UC

Son, 16, CD

SCD 2+ months

Hi Rhonda-

From reading this, it looks like both you and are feeling better-

after only 2 months on SCD. When I read BTVS, my interpretation was that

this was a long tern commitment- at least 2 years. When reading the

stories of people on SCD- like the authors of some of the SCD cookbooks,

I realized that they had also been on the diet for a long time.

Eventually some of them did stop their medication, but it seems that they

did this after being symptom- free for a long time as well. I am still

just a " newbie " here myself, but I think this diet is a long

term process.

I think it would be too soon for everything to be " normal "

after 2 months. It is encouraging that is feeling better, but, he

was quite sick to begin with. Are these lab results worse than before he

was on the diet? Is he getting better or sicker? Is he on any medication

at all?

I think the diet has helped a lot of people, but over time.

PJ

[Guest guest]

>

> I just wish we'd started this years ago.

Yeah - don't we all - or most of us. Some of us were

smart enough to smart very shortly after getting diagnosed.

Which always impresses me.

My head just wasn't there at the time.

Mara

[Guest guest]

My hubby likes my cooking too. My family is definitely benefiting from having me

in the kitchen!

It's good that is feeling better. Maybe the GI is trying to get onto

things before they might get worse- but he is looking at some pretty " big gun "

medications. The fact that is not having symptoms is a good thing.

Nobody wants to be on meds- but some have worse side effects than others.

Perhaps the GI doc would consider trying something with less side effects first-

something better than the imuran/remicade/humira drugs from the side effect

perspective. Maybe he would agree to let things be as they are ( since all is

well ) but to use something milder if there were more symptoms.

Then there is the LDN possibility discussed on this group. I keep saying this,

but it's not meds vs diet, either or. Many seem to be on meds at the beginning-

and then are very lucky to get off them down the road during the course of the

diet. Others perhaps stop meds early, and also do fine, but Elaine never stated

that one should stop meds on the diet, or never use them.

The main point is that is feeling well, and for that- all is worth it!

PJ

-- In BTVC-SCD , Rhonda Roman wrote:

>

> Hi PJ,

>

> I agree, the diet takes time. I was just hoping that the tests would

> reflect how well we have been feeling compared to pre-SCD. was off

> of all meds for the last year, but he's been symptomatic. I knew something

> was brewing to make a comeback, if you know what I mean. Tummy aches

> becoming a regular thing instead of occasional, etc. When we saw his GI 4

> months ago his labs were good, but he was symptomatic. Now that he's not,

> the labs are cruddy. At the moment he's just on the anti-biotics for his

> fistulas, multi-vitamin, calcium and B complex.

>

> I'm not giving up on the diet. The entire family, including hubby who was

> negative and resentful of the diet at first agree that the diet

> stays. Hubby at least has seen the improvement and perhaps my cooking is

> improving. *smile* I just wish we'd started this years ago.

>

> Rhonda UC

> Son, 16, CD

> SCD 2+ months

>

>

> >Hi Rhonda-

> > From reading this, it looks like both you and are feeling better-

> > after only 2 months on SCD. When I read BTVS, my interpretation was that

> > this was a long tern commitment- at least 2 years. When reading the

> > stories of people on SCD- like the authors of some of the SCD cookbooks,

> > I realized that they had also been on the diet for a long time.

> > Eventually some of them did stop their medication, but it seems that they

> > did this after being symptom- free for a long time as well. I am still

> > just a " newbie " here myself, but I think this diet is a long term process.

> >

> >I think it would be too soon for everything to be " normal " after 2 months.

> >It is encouraging that is feeling better, but, he was quite sick to

> >begin with. Are these lab results worse than before he was on the diet? Is

> >he getting better or sicker? Is he on any medication at all?

> >

> >I think the diet has helped a lot of people, but over time.

> >PJ

>

[Guest guest]

Rhonda,

It sounds as if you are discouraged and I understand that if the Gi that you love is unhappy with the diet and 's (K for the rest of the note) bloods--it can get you down.

BUT, you have seen symptomatic relief in 2 months for K. Wow, that's great. I'm not as sick as K and it took me 3 mos on SCD AND meds, Lialda, to become asymptomatic. Did you really expect his bloods to be wonderful after only 2 mos on SCD? It has taken me a year to start weaning my med down, but I'm not med free and hope to start LDN soon. I also took the study to my GI and he's skeptical, but is currently researching it to see if he will prescribe it. I would love his participation, but after reading all the stuff, I will obtain it no matter what and give it a try. It has such a low incidence of side effects, I figure I have nothing to lose. PJ says it's not meds vs. diet and she's right. It's about managing this illness, whatever it takes, and staying as healthy as possible. You have to go with your gut, and it sounds like your gut is telling you that K shouldn't go on Humira.

So, it might help if you could tell us what K eats and what he tolerates and doesn't, as well as his likes and dislikes. Sounds like he doesn't like the enchiladas! So, I'm just curious, why can't you give him a steak every night, if that will make him eat? You're on the right track with the fatter yogurt--when kids are sick, only a few things appeal to them and if steak is what he wants......... There are inexpensive ways to have steak and ways to bump up the calories as well. But, it would help to know what else he's eating and loving.

My personal opinion is, it is worth it to talk to your PCP and see what he says. I think that you'll find that it's hard for docs to do unconventional things. LDN may not be the perfect fit for K either, but perhaps continuing the diet with more calories, LDN and a lesser intense drug combo ( discuss all your reservations with your GI and PCP--tell them how Humira would adversely affect K's and your life and make them come up with a better alternative med- wise).

It's hard being sick......it's harder to be a Mom and see your child sick.

Please keep us posted.

Terry

UC/Proctosigmoiditis 1+ year

Lialda 1+ year

Tamoxifen

[Guest guest]

Rhonda,

It sounds as if you are discouraged and I understand that if the Gi that you love is unhappy with the diet and 's (K for the rest of the note) bloods--it can get you down.

BUT, you have seen symptomatic relief in 2 months for K. Wow, that's great. I'm not as sick as K and it took me 3 mos on SCD AND meds, Lialda, to become asymptomatic. Did you really expect his bloods to be wonderful after only 2 mos on SCD? It has taken me a year to start weaning my med down, but I'm not med free and hope to start LDN soon. I also took the study to my GI and he's skeptical, but is currently researching it to see if he will prescribe it. I would love his participation, but after reading all the stuff, I will obtain it no matter what and give it a try. It has such a low incidence of side effects, I figure I have nothing to lose. PJ says it's not meds vs. diet and she's right. It's about managing this illness, whatever it takes, and staying as healthy as possible. You have to go with your gut, and it sounds like your gut is telling you that K shouldn't go on Humira.

So, it might help if you could tell us what K eats and what he tolerates and doesn't, as well as his likes and dislikes. Sounds like he doesn't like the enchiladas! So, I'm just curious, why can't you give him a steak every night, if that will make him eat? You're on the right track with the fatter yogurt--when kids are sick, only a few things appeal to them and if steak is what he wants......... There are inexpensive ways to have steak and ways to bump up the calories as well. But, it would help to know what else he's eating and loving.

My personal opinion is, it is worth it to talk to your PCP and see what he says. I think that you'll find that it's hard for docs to do unconventional things. LDN may not be the perfect fit for K either, but perhaps continuing the diet with more calories, LDN and a lesser intense drug combo ( discuss all your reservations with your GI and PCP--tell them how Humira would adversely affect K's and your life and make them come up with a better alternative med- wise).

It's hard being sick......it's harder to be a Mom and see your child sick.

Please keep us posted.

Terry

UC/Proctosigmoiditis 1+ year

Lialda 1+ year

Tamoxifen

[Guest guest]

Rhonda,

It sounds as if you are discouraged and I understand that if the Gi that you love is unhappy with the diet and 's (K for the rest of the note) bloods--it can get you down.

BUT, you have seen symptomatic relief in 2 months for K. Wow, that's great. I'm not as sick as K and it took me 3 mos on SCD AND meds, Lialda, to become asymptomatic. Did you really expect his bloods to be wonderful after only 2 mos on SCD? It has taken me a year to start weaning my med down, but I'm not med free and hope to start LDN soon. I also took the study to my GI and he's skeptical, but is currently researching it to see if he will prescribe it. I would love his participation, but after reading all the stuff, I will obtain it no matter what and give it a try. It has such a low incidence of side effects, I figure I have nothing to lose. PJ says it's not meds vs. diet and she's right. It's about managing this illness, whatever it takes, and staying as healthy as possible. You have to go with your gut, and it sounds like your gut is telling you that K shouldn't go on Humira.

So, it might help if you could tell us what K eats and what he tolerates and doesn't, as well as his likes and dislikes. Sounds like he doesn't like the enchiladas! So, I'm just curious, why can't you give him a steak every night, if that will make him eat? You're on the right track with the fatter yogurt--when kids are sick, only a few things appeal to them and if steak is what he wants......... There are inexpensive ways to have steak and ways to bump up the calories as well. But, it would help to know what else he's eating and loving.

My personal opinion is, it is worth it to talk to your PCP and see what he says. I think that you'll find that it's hard for docs to do unconventional things. LDN may not be the perfect fit for K either, but perhaps continuing the diet with more calories, LDN and a lesser intense drug combo ( discuss all your reservations with your GI and PCP--tell them how Humira would adversely affect K's and your life and make them come up with a better alternative med- wise).

It's hard being sick......it's harder to be a Mom and see your child sick.

Please keep us posted.

Terry

UC/Proctosigmoiditis 1+ year

Lialda 1+ year

Tamoxifen

[Guest guest]

Hi Terry

It sounds as

if you are discouraged and I understand that if the Gi that you love is

unhappy with the diet and 's (K for the rest of the note) bloods--it

can get you down.

BUT, you have seen symptomatic relief in 2 months for K. Wow, that's

great. I'm not as sick as K and it took me 3 mos on SCD AND meds, Lialda,

to become asymptomatic. Did you really expect his bloods to be

wonderful after only 2 mos on SCD?

I guess I expected them to be the same, not

worse. But I've been telling myself that he's been experiencing a

lot of die off and that may have influenced the blood test results

somewhat. I expect that while we engage in warfare with the nasty

bacteria there's bound to be some effects on the war zone.

It has

taken me a year to start weaning my med down, but I'm not med free and

hope to start LDN soon. I also took the study to my GI and he's

skeptical, but is currently researching it to see if he will prescribe

it. I would love his participation, but after reading all the stuff, I

will obtain it no matter what and give it a try. It has such a low

incidence of side effects, I figure I have nothing to lose. PJ says it's

not meds vs. diet and she's right. It's about managing this illness,

whatever it takes, and staying as healthy as possible. You have to go

with your gut, and it sounds like your gut is telling you that K

shouldn't go on Humira.

Yeah... I've got a month before 's next

GI appt to do all the research and really know what I'm talking about

with the LDN. I have a really bad feeling about the Humira.

I'm not anti-meds... when was given Remicade before it was after

all other options that I was aware of had been tried. It was the

only thing that stopped the 5 lb a week weight loss. I just feel

that when he's feeling so much better that he has and his weight loss has

stopped, that bringing Humira into his life is too much too soon.

For me, Humira has to be the last try, as Remicade was. If I'd

known about LDN before, I'd have found a way to try it then too.

I'm feeling very fortunate to have all of the people on this board and

others that care so much for others while they themselves are struggling

with their own issues.

So, it might help if you could tell us what K eats and what he tolerates

and doesn't, as well as his likes and dislikes. Sounds like he doesn't

like the enchiladas! So, I'm just curious, why can't you give him

a steak every night, if that will make him eat? You're on the right track

with the fatter yogurt--when kids are sick, only a few things appeal to

them and if steak is what he wants......... There are inexpensive ways to

have steak and ways to bump up the calories as well. But, it would help

to know what else he's eating and loving.

is loving and tolerating foods in

stage 3 and 4. He has a yummy 1/2 & 1/2 yogurt smoothie with

fruit and a touch of honey in the morning. He drinks Welch's grape

juice cut 50/50 with club soda. I've made chicken nuggets,

smothered them with italian tomato sauce and covered that with parmesan

and havarti... baked it for a bit.., lemme see he loves the Green Chile

Chicken Casserole, zucchini muffins, banana muffins are a second favorite

to the zucchini ones. Ground beef steaks with catsup, and of course

steaks. He tired of my crock-pot chili but loved it for awhile. He

has turned down eggs at every offering.. he goes through phases where he

loves something, then rejects it for months. He has more smoothie

in the evening... he loves it. I suppose I could make him a steak

every night if that's what he'll eat. He'd love a real burger bun,

but I haven't figured out anything close yet.

My personal

opinion is, it is worth it to talk to your PCP and see what he says. I

think that you'll find that it's hard for docs to do unconventional

things. LDN may not be the perfect fit for K either, but perhaps

continuing the diet with more calories, LDN and a lesser intense drug

combo ( discuss all your reservations with your GI and PCP--tell them how

Humira would adversely affect K's and your life and make them come up

with a better alternative med- wise).

I'm trying the calorie raising. He's

just never hungry and doesn't want to eat when he's not. I'm going

to start talking to our PCP tomorrow afternoon. Tell him where I'm

at with it all, that I'm going to try to get the GI on board first, but

see where he stands if the GI will only go with the Humira and not try

LDN first.

It's

hard being sick......it's harder to be a Mom and see your child

sick.

Agreed.

Rhonda UC

Son, 16, CD

SCD 2+ months

[Guest guest]

Hi Terry

It sounds as

if you are discouraged and I understand that if the Gi that you love is

unhappy with the diet and 's (K for the rest of the note) bloods--it

can get you down.

BUT, you have seen symptomatic relief in 2 months for K. Wow, that's

great. I'm not as sick as K and it took me 3 mos on SCD AND meds, Lialda,

to become asymptomatic. Did you really expect his bloods to be

wonderful after only 2 mos on SCD?

I guess I expected them to be the same, not

worse. But I've been telling myself that he's been experiencing a

lot of die off and that may have influenced the blood test results

somewhat. I expect that while we engage in warfare with the nasty

bacteria there's bound to be some effects on the war zone.

It has

taken me a year to start weaning my med down, but I'm not med free and

hope to start LDN soon. I also took the study to my GI and he's

skeptical, but is currently researching it to see if he will prescribe

it. I would love his participation, but after reading all the stuff, I

will obtain it no matter what and give it a try. It has such a low

incidence of side effects, I figure I have nothing to lose. PJ says it's

not meds vs. diet and she's right. It's about managing this illness,

whatever it takes, and staying as healthy as possible. You have to go

with your gut, and it sounds like your gut is telling you that K

shouldn't go on Humira.

Yeah... I've got a month before 's next

GI appt to do all the research and really know what I'm talking about

with the LDN. I have a really bad feeling about the Humira.

I'm not anti-meds... when was given Remicade before it was after

all other options that I was aware of had been tried. It was the

only thing that stopped the 5 lb a week weight loss. I just feel

that when he's feeling so much better that he has and his weight loss has

stopped, that bringing Humira into his life is too much too soon.

For me, Humira has to be the last try, as Remicade was. If I'd

known about LDN before, I'd have found a way to try it then too.

I'm feeling very fortunate to have all of the people on this board and

others that care so much for others while they themselves are struggling

with their own issues.

So, it might help if you could tell us what K eats and what he tolerates

and doesn't, as well as his likes and dislikes. Sounds like he doesn't

like the enchiladas! So, I'm just curious, why can't you give him

a steak every night, if that will make him eat? You're on the right track

with the fatter yogurt--when kids are sick, only a few things appeal to

them and if steak is what he wants......... There are inexpensive ways to

have steak and ways to bump up the calories as well. But, it would help

to know what else he's eating and loving.

is loving and tolerating foods in

stage 3 and 4. He has a yummy 1/2 & 1/2 yogurt smoothie with

fruit and a touch of honey in the morning. He drinks Welch's grape

juice cut 50/50 with club soda. I've made chicken nuggets,

smothered them with italian tomato sauce and covered that with parmesan

and havarti... baked it for a bit.., lemme see he loves the Green Chile

Chicken Casserole, zucchini muffins, banana muffins are a second favorite

to the zucchini ones. Ground beef steaks with catsup, and of course

steaks. He tired of my crock-pot chili but loved it for awhile. He

has turned down eggs at every offering.. he goes through phases where he

loves something, then rejects it for months. He has more smoothie

in the evening... he loves it. I suppose I could make him a steak

every night if that's what he'll eat. He'd love a real burger bun,

but I haven't figured out anything close yet.

My personal

opinion is, it is worth it to talk to your PCP and see what he says. I

think that you'll find that it's hard for docs to do unconventional

things. LDN may not be the perfect fit for K either, but perhaps

continuing the diet with more calories, LDN and a lesser intense drug

combo ( discuss all your reservations with your GI and PCP--tell them how

Humira would adversely affect K's and your life and make them come up

with a better alternative med- wise).

I'm trying the calorie raising. He's

just never hungry and doesn't want to eat when he's not. I'm going

to start talking to our PCP tomorrow afternoon. Tell him where I'm

at with it all, that I'm going to try to get the GI on board first, but

see where he stands if the GI will only go with the Humira and not try

LDN first.

It's

hard being sick......it's harder to be a Mom and see your child

sick.

Agreed.

Rhonda UC

Son, 16, CD

SCD 2+ months

[Guest guest]

There's a recipe for onion rolls with almond flour in the " Cooking for Celiacs

Colitis Chrons and IBS " cookbook. I haven't made them yet, but they look like

they could be used for hamburger buns.p

PJ

- In BTVC-SCD , Rhonda Roman wrote:

>

> Hi Terry

>

> >It sounds as if you are discouraged and I understand that if the Gi that

> >you love is unhappy with the diet and 's (K for the rest of the note)

> >bloods--it can get you down.

> >

> >BUT, you have seen symptomatic relief in 2 months for K. Wow, that's

> >great. I'm not as sick as K and it took me 3 mos on SCD AND meds, Lialda,

> >to become asymptomatic. Did you really expect his bloods to be wonderful

> >after only 2 mos on SCD?

>

> I guess I expected them to be the same, not worse. But I've been telling

> myself that he's been experiencing a lot of die off and that may have

> influenced the blood test results somewhat. I expect that while we engage

> in warfare with the nasty bacteria there's bound to be some effects on the

> war zone.

>

> > It has taken me a year to start weaning my med down, but I'm not med

> > free and hope to start LDN soon. I also took the study to my GI and he's

> > skeptical, but is currently researching it to see if he will prescribe

> > it. I would love his participation, but after reading all the stuff, I

> > will obtain it no matter what and give it a try. It has such a low

> > incidence of side effects, I figure I have nothing to lose. PJ says it's

> > not meds vs. diet and she's right. It's about managing this illness,

> > whatever it takes, and staying as healthy as possible. You have to go

> > with your gut, and it sounds like your gut is telling you that K

> > shouldn't go on Humira.

>

> Yeah... I've got a month before 's next GI appt to do all the research

> and really know what I'm talking about with the LDN. I have a really bad

> feeling about the Humira. I'm not anti-meds... when was given

> Remicade before it was after all other options that I was aware of had been

> tried. It was the only thing that stopped the 5 lb a week weight loss. I

> just feel that when he's feeling so much better that he has and his weight

> loss has stopped, that bringing Humira into his life is too much too

> soon. For me, Humira has to be the last try, as Remicade was. If I'd

> known about LDN before, I'd have found a way to try it then too. I'm

> feeling very fortunate to have all of the people on this board and others

> that care so much for others while they themselves are struggling with

> their own issues.

>

> >

> >So, it might help if you could tell us what K eats and what he tolerates

> >and doesn't, as well as his likes and dislikes. Sounds like he doesn't

> >like the enchiladas! So, I'm just curious, why can't you give him a steak

> >every night, if that will make him eat? You're on the right track with the

> >fatter yogurt--when kids are sick, only a few things appeal to them and if

> >steak is what he wants......... There are inexpensive ways to have steak

> >and ways to bump up the calories as well. But, it would help to know what

> >else he's eating and loving.

>

> is loving and tolerating foods in stage 3 and 4. He has a yummy 1/2

> & 1/2 yogurt smoothie with fruit and a touch of honey in the morning. He

> drinks Welch's grape juice cut 50/50 with club soda. I've made chicken

> nuggets, smothered them with italian tomato sauce and covered that with

> parmesan and havarti... baked it for a bit.., lemme see he loves the Green

> Chile Chicken Casserole, zucchini muffins, banana muffins are a second

> favorite to the zucchini ones. Ground beef steaks with catsup, and of

> course steaks. He tired of my crock-pot chili but loved it for awhile. He

> has turned down eggs at every offering.. he goes through phases where he

> loves something, then rejects it for months. He has more smoothie in the

> evening... he loves it. I suppose I could make him a steak every night if

> that's what he'll eat. He'd love a real burger bun, but I haven't figured

> out anything close yet.

>

>

> >My personal opinion is, it is worth it to talk to your PCP and see what he

> >says. I think that you'll find that it's hard for docs to do

> >unconventional things. LDN may not be the perfect fit for K either, but

> >perhaps continuing the diet with more calories, LDN and a lesser intense

> >drug combo ( discuss all your reservations with your GI and PCP--tell them

> >how Humira would adversely affect K's and your life and make them come up

> >with a better alternative med- wise).

>

> I'm trying the calorie raising. He's just never hungry and doesn't want to

> eat when he's not. I'm going to start talking to our PCP tomorrow

> afternoon. Tell him where I'm at with it all, that I'm going to try to get

> the GI on board first, but see where he stands if the GI will only go with

> the Humira and not try LDN first.

>

> > It's hard being sick......it's harder to be a Mom and see your child sick.

>

> Agreed.

>

> Rhonda UC

> Son, 16, CD

> SCD 2+ months

>

[Guest guest]

There's a recipe for onion rolls with almond flour in the " Cooking for Celiacs

Colitis Chrons and IBS " cookbook. I haven't made them yet, but they look like

they could be used for hamburger buns.p

PJ

- In BTVC-SCD , Rhonda Roman wrote:

>

> Hi Terry

>

> >It sounds as if you are discouraged and I understand that if the Gi that

> >you love is unhappy with the diet and 's (K for the rest of the note)

> >bloods--it can get you down.

> >

> >BUT, you have seen symptomatic relief in 2 months for K. Wow, that's

> >great. I'm not as sick as K and it took me 3 mos on SCD AND meds, Lialda,

> >to become asymptomatic. Did you really expect his bloods to be wonderful

> >after only 2 mos on SCD?

>

> I guess I expected them to be the same, not worse. But I've been telling

> myself that he's been experiencing a lot of die off and that may have

> influenced the blood test results somewhat. I expect that while we engage

> in warfare with the nasty bacteria there's bound to be some effects on the

> war zone.

>

> > It has taken me a year to start weaning my med down, but I'm not med

> > free and hope to start LDN soon. I also took the study to my GI and he's

> > skeptical, but is currently researching it to see if he will prescribe

> > it. I would love his participation, but after reading all the stuff, I

> > will obtain it no matter what and give it a try. It has such a low

> > incidence of side effects, I figure I have nothing to lose. PJ says it's

> > not meds vs. diet and she's right. It's about managing this illness,

> > whatever it takes, and staying as healthy as possible. You have to go

> > with your gut, and it sounds like your gut is telling you that K

> > shouldn't go on Humira.

>

> Yeah... I've got a month before 's next GI appt to do all the research

> and really know what I'm talking about with the LDN. I have a really bad

> feeling about the Humira. I'm not anti-meds... when was given

> Remicade before it was after all other options that I was aware of had been

> tried. It was the only thing that stopped the 5 lb a week weight loss. I

> just feel that when he's feeling so much better that he has and his weight

> loss has stopped, that bringing Humira into his life is too much too

> soon. For me, Humira has to be the last try, as Remicade was. If I'd

> known about LDN before, I'd have found a way to try it then too. I'm

> feeling very fortunate to have all of the people on this board and others

> that care so much for others while they themselves are struggling with

> their own issues.

>

> >

> >So, it might help if you could tell us what K eats and what he tolerates

> >and doesn't, as well as his likes and dislikes. Sounds like he doesn't

> >like the enchiladas! So, I'm just curious, why can't you give him a steak

> >every night, if that will make him eat? You're on the right track with the

> >fatter yogurt--when kids are sick, only a few things appeal to them and if

> >steak is what he wants......... There are inexpensive ways to have steak

> >and ways to bump up the calories as well. But, it would help to know what

> >else he's eating and loving.

>

> is loving and tolerating foods in stage 3 and 4. He has a yummy 1/2

> & 1/2 yogurt smoothie with fruit and a touch of honey in the morning. He

> drinks Welch's grape juice cut 50/50 with club soda. I've made chicken

> nuggets, smothered them with italian tomato sauce and covered that with

> parmesan and havarti... baked it for a bit.., lemme see he loves the Green

> Chile Chicken Casserole, zucchini muffins, banana muffins are a second

> favorite to the zucchini ones. Ground beef steaks with catsup, and of

> course steaks. He tired of my crock-pot chili but loved it for awhile. He

> has turned down eggs at every offering.. he goes through phases where he

> loves something, then rejects it for months. He has more smoothie in the

> evening... he loves it. I suppose I could make him a steak every night if

> that's what he'll eat. He'd love a real burger bun, but I haven't figured

> out anything close yet.

>

>

> >My personal opinion is, it is worth it to talk to your PCP and see what he

> >says. I think that you'll find that it's hard for docs to do

> >unconventional things. LDN may not be the perfect fit for K either, but

> >perhaps continuing the diet with more calories, LDN and a lesser intense

> >drug combo ( discuss all your reservations with your GI and PCP--tell them

> >how Humira would adversely affect K's and your life and make them come up

> >with a better alternative med- wise).

>

> I'm trying the calorie raising. He's just never hungry and doesn't want to

> eat when he's not. I'm going to start talking to our PCP tomorrow

> afternoon. Tell him where I'm at with it all, that I'm going to try to get

> the GI on board first, but see where he stands if the GI will only go with

> the Humira and not try LDN first.

>

> > It's hard being sick......it's harder to be a Mom and see your child sick.

>

> Agreed.

>

> Rhonda UC

> Son, 16, CD

> SCD 2+ months

>

[Guest guest]

There's a recipe for onion rolls with almond flour in the " Cooking for Celiacs

Colitis Chrons and IBS " cookbook. I haven't made them yet, but they look like

they could be used for hamburger buns.p

PJ

- In BTVC-SCD , Rhonda Roman wrote:

>

> Hi Terry

>

> >It sounds as if you are discouraged and I understand that if the Gi that

> >you love is unhappy with the diet and 's (K for the rest of the note)

> >bloods--it can get you down.

> >

> >BUT, you have seen symptomatic relief in 2 months for K. Wow, that's

> >great. I'm not as sick as K and it took me 3 mos on SCD AND meds, Lialda,

> >to become asymptomatic. Did you really expect his bloods to be wonderful

> >after only 2 mos on SCD?

>

> I guess I expected them to be the same, not worse. But I've been telling

> myself that he's been experiencing a lot of die off and that may have

> influenced the blood test results somewhat. I expect that while we engage

> in warfare with the nasty bacteria there's bound to be some effects on the

> war zone.

>

> > It has taken me a year to start weaning my med down, but I'm not med

> > free and hope to start LDN soon. I also took the study to my GI and he's

> > skeptical, but is currently researching it to see if he will prescribe

> > it. I would love his participation, but after reading all the stuff, I

> > will obtain it no matter what and give it a try. It has such a low

> > incidence of side effects, I figure I have nothing to lose. PJ says it's

> > not meds vs. diet and she's right. It's about managing this illness,

> > whatever it takes, and staying as healthy as possible. You have to go

> > with your gut, and it sounds like your gut is telling you that K

> > shouldn't go on Humira.

>

> Yeah... I've got a month before 's next GI appt to do all the research

> and really know what I'm talking about with the LDN. I have a really bad

> feeling about the Humira. I'm not anti-meds... when was given

> Remicade before it was after all other options that I was aware of had been

> tried. It was the only thing that stopped the 5 lb a week weight loss. I

> just feel that when he's feeling so much better that he has and his weight

> loss has stopped, that bringing Humira into his life is too much too

> soon. For me, Humira has to be the last try, as Remicade was. If I'd

> known about LDN before, I'd have found a way to try it then too. I'm

> feeling very fortunate to have all of the people on this board and others

> that care so much for others while they themselves are struggling with

> their own issues.

>

> >

> >So, it might help if you could tell us what K eats and what he tolerates

> >and doesn't, as well as his likes and dislikes. Sounds like he doesn't

> >like the enchiladas! So, I'm just curious, why can't you give him a steak

> >every night, if that will make him eat? You're on the right track with the

> >fatter yogurt--when kids are sick, only a few things appeal to them and if

> >steak is what he wants......... There are inexpensive ways to have steak

> >and ways to bump up the calories as well. But, it would help to know what

> >else he's eating and loving.

>

> is loving and tolerating foods in stage 3 and 4. He has a yummy 1/2

> & 1/2 yogurt smoothie with fruit and a touch of honey in the morning. He

> drinks Welch's grape juice cut 50/50 with club soda. I've made chicken

> nuggets, smothered them with italian tomato sauce and covered that with

> parmesan and havarti... baked it for a bit.., lemme see he loves the Green

> Chile Chicken Casserole, zucchini muffins, banana muffins are a second

> favorite to the zucchini ones. Ground beef steaks with catsup, and of

> course steaks. He tired of my crock-pot chili but loved it for awhile. He

> has turned down eggs at every offering.. he goes through phases where he

> loves something, then rejects it for months. He has more smoothie in the

> evening... he loves it. I suppose I could make him a steak every night if

> that's what he'll eat. He'd love a real burger bun, but I haven't figured

> out anything close yet.

>

>

> >My personal opinion is, it is worth it to talk to your PCP and see what he

> >says. I think that you'll find that it's hard for docs to do

> >unconventional things. LDN may not be the perfect fit for K either, but

> >perhaps continuing the diet with more calories, LDN and a lesser intense

> >drug combo ( discuss all your reservations with your GI and PCP--tell them

> >how Humira would adversely affect K's and your life and make them come up

> >with a better alternative med- wise).

>

> I'm trying the calorie raising. He's just never hungry and doesn't want to

> eat when he's not. I'm going to start talking to our PCP tomorrow

> afternoon. Tell him where I'm at with it all, that I'm going to try to get

> the GI on board first, but see where he stands if the GI will only go with

> the Humira and not try LDN first.

>

> > It's hard being sick......it's harder to be a Mom and see your child sick.

>

> Agreed.

>

> Rhonda UC

> Son, 16, CD

> SCD 2+ months

>

[Guest guest]

I had a beef/bison burger last night between 2 pieces of Easy

Sandwich Bread – recipe at No More Crohns.com. I leave out the cheese

however, and they turn out just fine (have to add water however).

Carol

CD 21 yrs SCD 4.5 yrs

From:

BTVC-SCD [mailto:BTVC-SCD ] On Behalf Of smdsmom2008

There's a recipe for onion rolls with almond

flour in the " Cooking for Celiacs Colitis Chrons and IBS " cookbook. I

haven't made them yet, but they look like they could be used for hamburger

buns.p

PJ

[Guest guest]

Hi, Rhonda,Have been glad that has done well symptom wise, and to see the wonderful support and input here. I made the biscuits in the recipe pasted below and liked them for a sandwich. Not as sweet as regular store bought burger buns. From Everyday Grain Free Gourmet.Ruth

2 of 2 Photo(s)

EGFGBasicBiscuitcropped.jpg

1 of 1 File(s)

scd biscuits.rtf

[Guest guest]

Hi, Rhonda,Have been glad that has done well symptom wise, and to see the wonderful support and input here. I made the biscuits in the recipe pasted below and liked them for a sandwich. Not as sweet as regular store bought burger buns. From Everyday Grain Free Gourmet.Ruth

2 of 2 Photo(s)

EGFGBasicBiscuitcropped.jpg

1 of 1 File(s)

scd biscuits.rtf

[Guest guest]

Hi, Rhonda,Have been glad that has done well symptom wise, and to see the wonderful support and input here. I made the biscuits in the recipe pasted below and liked them for a sandwich. Not as sweet as regular store bought burger buns. From Everyday Grain Free Gourmet.Ruth

2 of 2 Photo(s)

EGFGBasicBiscuitcropped.jpg

1 of 1 File(s)

scd biscuits.rtf