Re: new to group and diet...daughter has crohn's...struggling!!!

[Guest guest]

We just want her to eat!!! It is so hard to see her health deteriorating and feeling helpless to stop it! Should we abandon the diet at this point to get some weight on her, then try again?? Before abandoning the diet, I would try just adding some different foods. It's generally best to go slow and start with well cooked veggies and some fruit, meat, and eggs/dairy if you tolerate them. However, I think staying on the SCD at all is better than nothing, so you could always try more advanced foods such as nut butters or flours to see if she will eat those and gain weight. The two things that helped me gain weight were cheese and nut butter goodies, so if I were you I would try those. If they make her symptoms worse then that's no good, but if there's not a noticeable difference, then those two things would probably help her put on weight and keep the doctor from criticizing the diet. Hope that helps! Cheers!Alyssa 16 yo UC April 2008, dx Sept 2008SCD June 2009 (restarted)Azathioprine 75 mg 1x per dayPrednisone 12.5 mg 1x per day (trying to wean!!!!)

[Guest guest]

thanks so much.....i have been experimenting with some other

things...unfortunately she HATES the almond flour...i think it may be the

texture in her mouth that is turning her off...sometimes the taste. she does eat

the cheeses, meats, fruits, green beans and carrots when she can...i have been

making the yogurt and she liked the smoothies but they seem to send her to the

bathroom so we have backed off on that. i will definitely try the nut butter

goodies! problem is that she feels sick so much of the time she just doesn't eat

or doesn't eat much! when i try to push her to eat a little more...sometimes

everything comes back up and we lose what little got in! i am making the

electrolyte solution today and trying that hoping to keep her hydrated at

least...and maybe epsom salt baths to help with die-off if that's what is

happening. just starting to run out of ideas.......

>

> > We just want her to eat!!! It is so hard to see her health

> > deteriorating and feeling helpless to stop it! Should we abandon the

> > diet at this point to get some weight on her, then try again??

>

>

> Before abandoning the diet, I would try just adding some different

> foods. It's generally best to go slow and start with well cooked

> veggies and some fruit, meat, and eggs/dairy if you tolerate them.

> However, I think staying on the SCD at all is better than nothing, so

> you could always try more advanced foods such as nut butters or flours

> to see if she will eat those and gain weight. The two things that

> helped me gain weight were cheese and nut butter goodies, so if I were

> you I would try those. If they make her symptoms worse then that's no

> good, but if there's not a noticeable difference, then those two

> things would probably help her put on weight and keep the doctor from

> criticizing the diet.

> Hope that helps!

>

> Cheers!

> Alyssa 16 yo

> UC April 2008, dx Sept 2008

> SCD June 2009 (restarted)

> Azathioprine 75 mg 1x per day

> Prednisone 12.5 mg 1x per day (trying to wean!!!!)

>

[Guest guest]

Are you making bone broth soups? They are soothing to the gut and if she sips on

them throughout the day they will help keep her hydrated. You can puree the meat

and veggies and put them back in the soup. Also add a little bit of oil or

butter for calories.

Are you cooking and pureeing the fruits and veggies? They are tolerated better

this way. Acorn squash mashed up with butter, honey and a little cinnamon adds

calories.

A nice treat is a frozen ripe bananna, topped with dripped yogurt or DCCC,

honey, cinnamon, and nut butter.

PJ

> >

> > > We just want her to eat!!! It is so hard to see her health

> > > deteriorating and feeling helpless to stop it! Should we abandon the

> > > diet at this point to get some weight on her, then try again??

> >

> >

> > Before abandoning the diet, I would try just adding some different

> > foods. It's generally best to go slow and start with well cooked

> > veggies and some fruit, meat, and eggs/dairy if you tolerate them.

> > However, I think staying on the SCD at all is better than nothing, so

> > you could always try more advanced foods such as nut butters or flours

> > to see if she will eat those and gain weight. The two things that

> > helped me gain weight were cheese and nut butter goodies, so if I were

> > you I would try those. If they make her symptoms worse then that's no

> > good, but if there's not a noticeable difference, then those two

> > things would probably help her put on weight and keep the doctor from

> > criticizing the diet.

> > Hope that helps!

> >

> > Cheers!

> > Alyssa 16 yo

> > UC April 2008, dx Sept 2008

> > SCD June 2009 (restarted)

> > Azathioprine 75 mg 1x per day

> > Prednisone 12.5 mg 1x per day (trying to wean!!!!)

> >

>

[Guest guest]

yes...still doing the soup. sometimes it's all she eats. mornings are the worst

time and soup and weak green ginger tea is all i can get in her. usually later

in the evening she will get an appetite and will eat, but with such sporadic

eating it hasn't been enough to sustain her weight. i am cooking the carrots and

apples/pears and she eats that at times but in small amts., also been doing the

bananas. i think she is losing her appetite with these things and the nausea

doesn't help...she does love chicken and i experiment with legal ingredients to

add flavor and variety. i've experimented with the breads, muffins,

crackers...nothing appeals that is made with the nut flour. she isn't a big egg

eater so anything " eggy " isn't a hit. somedays i feel like i live in the kitchen

and alot of things are thrown out. does anyone have any suggestions for

relieving the nausea?? i'm beginning to prepare myself for the dr. to suggest

hosp. and elemental diet. Can anyone that has gone through that with their child

give us some info. on what to expect and how long??

> > >

> > > > We just want her to eat!!! It is so hard to see her health

> > > > deteriorating and feeling helpless to stop it! Should we abandon the

> > > > diet at this point to get some weight on her, then try again??

> > >

> > >

> > > Before abandoning the diet, I would try just adding some different

> > > foods. It's generally best to go slow and start with well cooked

> > > veggies and some fruit, meat, and eggs/dairy if you tolerate them.

> > > However, I think staying on the SCD at all is better than nothing, so

> > > you could always try more advanced foods such as nut butters or flours

> > > to see if she will eat those and gain weight. The two things that

> > > helped me gain weight were cheese and nut butter goodies, so if I were

> > > you I would try those. If they make her symptoms worse then that's no

> > > good, but if there's not a noticeable difference, then those two

> > > things would probably help her put on weight and keep the doctor from

> > > criticizing the diet.

> > > Hope that helps!

> > >

> > > Cheers!

> > > Alyssa 16 yo

> > > UC April 2008, dx Sept 2008

> > > SCD June 2009 (restarted)

> > > Azathioprine 75 mg 1x per day

> > > Prednisone 12.5 mg 1x per day (trying to wean!!!!)

> > >

> >

>

[Guest guest]

I noticed that you have just started SCD and the nut flours are a bit advanced

for this stage. Have you seen the pecanbread.com site? It is for kids with ASD

and is non dairy ( we can have legal SCD yogurt and legal cheese). There is a

section on stages which helps with deciding which foods to start with and how to

progress. In general, nut butters are easier to tolerate than the flour and you

can bake with it too.

It's not always easy to find a GI that also embraces nutritional treatment, but

it is important to do what you need to heal. Many of us use both medication and

SCD. Perhaps your GI doc will suggest a medication that will help while she

progresses on SCD- perhaps Prednisone again if that helped.

I would do what you need for her to recover. If she ends up on the elemental

diet- (which is not SCD compatible)- you can start on SCD when she begins to eat

solid food again. It's important to do what you need to do to get her well.

PJ

> > > >

> > > > > We just want her to eat!!! It is so hard to see her health

> > > > > deteriorating and feeling helpless to stop it! Should we abandon the

> > > > > diet at this point to get some weight on her, then try again??

> > > >

> > > >

> > > > Before abandoning the diet, I would try just adding some different

> > > > foods. It's generally best to go slow and start with well cooked

> > > > veggies and some fruit, meat, and eggs/dairy if you tolerate them.

> > > > However, I think staying on the SCD at all is better than nothing, so

> > > > you could always try more advanced foods such as nut butters or flours

> > > > to see if she will eat those and gain weight. The two things that

> > > > helped me gain weight were cheese and nut butter goodies, so if I were

> > > > you I would try those. If they make her symptoms worse then that's no

> > > > good, but if there's not a noticeable difference, then those two

> > > > things would probably help her put on weight and keep the doctor from

> > > > criticizing the diet.

> > > > Hope that helps!

> > > >

> > > > Cheers!

> > > > Alyssa 16 yo

> > > > UC April 2008, dx Sept 2008

> > > > SCD June 2009 (restarted)

> > > > Azathioprine 75 mg 1x per day

> > > > Prednisone 12.5 mg 1x per day (trying to wean!!!!)

> > > >

> > >

> >

>

[Guest guest]

yes, she has fever...mostly low grade but during wean from prednisone there were

a few high ones and since on the diet there have been several times that her

fever was high 102-103...we were thinking maybe die-off symptoms? but most of

the time it is low 99-101. she does not complain of alot of pain...just sick

feelings she calls them...sometimes she will say her stomach feels bad and a

little achy...but she hasn't experienced the severe pain i've read about with

other crohn's patients. she has extreme fatigue and weakness at times and when

fever is active she falls asleep. she also has passed blood on occassion but

this hasn't happened alot. the low appetite/nausea has always been one of her

symptoms but of course when on the prednisone she ate like a horse. this symptom

returned slowly while weaning and is now back in full force. she was exactly in

the same situation when we first went to the dr. back in April and began the

meds. she is also on immuran and pentasa. mornings are really bad with gagging

and sometimes vomiting and feels really bad when bm's are coming which strangely

only occur in the morning hours up until about noon...then usually no bm's.

evenings are pretty good and she usually gets an appetite then so that's when i

feed her. but going with hardly any food until about 4 or 5 isn't good. i just

work with her in the mornings to get what i can in her. every time we go to dr.

he sends her for blood work to ck levels and many other things...so yes, i

think.

Suzanne

> >>>>

> >>>>> We just want her to eat!!! It is so hard to see her health

> >>>>> deteriorating and feeling helpless to stop it! Should we abandon the

> >>>>> diet at this point to get some weight on her, then try again??

> >>>>

> >>>>

> >>>> Before abandoning the diet, I would try just adding some different

> >>>> foods. It's generally best to go slow and start with well cooked

> >>>> veggies and some fruit, meat, and eggs/dairy if you tolerate them.

> >>>> However, I think staying on the SCD at all is better than nothing, so

> >>>> you could always try more advanced foods such as nut butters or flours

> >>>> to see if she will eat those and gain weight. The two things that

> >>>> helped me gain weight were cheese and nut butter goodies, so if I were

> >>>> you I would try those. If they make her symptoms worse then that's no

> >>>> good, but if there's not a noticeable difference, then those two

> >>>> things would probably help her put on weight and keep the doctor from

> >>>> criticizing the diet.

> >>>> Hope that helps!

> >>>>

> >>>> Cheers!

> >>>> Alyssa 16 yo

> >>>> UC April 2008, dx Sept 2008

> >>>> SCD June 2009 (restarted)

> >>>> Azathioprine 75 mg 1x per day

> >>>> Prednisone 12.5 mg 1x per day (trying to wean!!!!)

> >>>>

> >>>

> >>

> >

> >

> >

> >

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

> >

> >

[Guest guest]

yes, i agree...thank you for the encouragement! she is on pentasa and immuran

also. i will try the nut butters. i think she is really wanting normal food when

she does have an appetite and comparing everything to that right now...she

hasn't been on the diet long enough to get used to it so she is struggling with

the new textures and repetition. i will keep trying and wait to see what the dr.

suggests. thanks again!

suzanne

> > > > >

> > > > > > We just want her to eat!!! It is so hard to see her health

> > > > > > deteriorating and feeling helpless to stop it! Should we abandon the

> > > > > > diet at this point to get some weight on her, then try again??

> > > > >

> > > > >

> > > > > Before abandoning the diet, I would try just adding some different

> > > > > foods. It's generally best to go slow and start with well cooked

> > > > > veggies and some fruit, meat, and eggs/dairy if you tolerate them.

> > > > > However, I think staying on the SCD at all is better than nothing, so

> > > > > you could always try more advanced foods such as nut butters or flours

> > > > > to see if she will eat those and gain weight. The two things that

> > > > > helped me gain weight were cheese and nut butter goodies, so if I were

> > > > > you I would try those. If they make her symptoms worse then that's no

> > > > > good, but if there's not a noticeable difference, then those two

> > > > > things would probably help her put on weight and keep the doctor from

> > > > > criticizing the diet.

> > > > > Hope that helps!

> > > > >

> > > > > Cheers!

> > > > > Alyssa 16 yo

> > > > > UC April 2008, dx Sept 2008

> > > > > SCD June 2009 (restarted)

> > > > > Azathioprine 75 mg 1x per day

> > > > > Prednisone 12.5 mg 1x per day (trying to wean!!!!)

> > > > >

> > > >

> > >

> >

>

[Guest guest]

we did the epsom salt bath tonight for first time...will definitely continue!

yes, she loves the green ginger honey tea and we do that everyday...even cold

since she misses sweet tea and also plenty of water. we do the broth daily too

throughout the day. i learned about this site from someone on the pecanbread

group. i've just recently joined both. thanks for the help!!! i will continue

with these things....

Suzanne

> >>>>>>

> >>>>>>> We just want her to eat!!! It is so hard to see her health

> >>>>>>> deteriorating and feeling helpless to stop it! Should we abandon the

> >>>>>>> diet at this point to get some weight on her, then try again??

> >>>>>>

> >>>>>>

> >>>>>> Before abandoning the diet, I would try just adding some different

> >>>>>> foods. It's generally best to go slow and start with well cooked

> >>>>>> veggies and some fruit, meat, and eggs/dairy if you tolerate them.

> >>>>>> However, I think staying on the SCD at all is better than nothing, so

> >>>>>> you could always try more advanced foods such as nut butters or flours

> >>>>>> to see if she will eat those and gain weight. The two things that

> >>>>>> helped me gain weight were cheese and nut butter goodies, so if I were

> >>>>>> you I would try those. If they make her symptoms worse then that's no

> >>>>>> good, but if there's not a noticeable difference, then those two

> >>>>>> things would probably help her put on weight and keep the doctor from

> >>>>>> criticizing the diet.

> >>>>>> Hope that helps!

> >>>>>>

> >>>>>> Cheers!

> >>>>>> Alyssa 16 yo

> >>>>>> UC April 2008, dx Sept 2008

> >>>>>> SCD June 2009 (restarted)

> >>>>>> Azathioprine 75 mg 1x per day

> >>>>>> Prednisone 12.5 mg 1x per day (trying to wean!!!!)

> >>>>>>

> >>>>>

> >>>>

> >>>

> >>>

> >>>

> >>>

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

> >>>

> >>>

[Guest guest]

Suzanne,

Even in people without bowel problems- eating can stimulate a bowel movement.

It's the " gastro colic reflex " and it's normal. If she goes a lot in the

morning, she may sense this and eating may be uncomfortable. Once she has gone

as much as she needs to in the morning- this probably settles down and she is

handling more food. You can also explain this reflex to her so she knows it is

OK because if eating makes her go to the bathroom more, this may scare her.

It is not unusual for people to lose weight in the beginning on SCD and gain it

back as things improve. However, weight loss in a child is more concerning. Most

of us can deal with losing a few pounds but we are done growing and developing.

Children are not done growing so we must watch their weight more carefully.

Expect her doctor to be watching her weight carefully and also be concerned

about her getting enough nutrition on a restricted diet. I don't think the

weight loss is just because of SCD but most people who start SCD are sick and

there

is a change in diet. You can get plenty of calories and nutrients on SCD. It is

hard in the beginning but balance and variety are important.

Getting calories is a challenge with someone with a sick gut- because it does

not absorb nutrients well and the cramps and tummy pain make it hard to eat and

have an appetite. SCD foods are very nutritious though, and some of the recipes

on pecanbread.com are kid friendly. The nut butter brownies are full of

calories. If she tolerates it, coconut oil added to soups is delicious. Make the

yogurt out of half and half and drip it to make it thick and caloric. If she can

tolerate it, make sundaes with it. I've done this with bananas, but another way

is to take the dripped yogurt, top it with cooked apples,cinnamon, nut butter,

honey and drizzle with a little coconut oil which hardens and makes a crunchy

shell on top. Full of calories (I've had to cut them out ) but also good for

you. Eating in small amounts will help. Make SCD mayo to dip chicken in... You

can make butternut or acorn squash into a sweet dessert too.

I am the only one on SCD in my house, but after I got used to making SCD foods-

my 15 year old daughter started eating my food and now I can't keep her out of

it. I hope your daughter will start enjoying it and feeling better. Once your

daughter tolerates more food, she will be able to eat different things. Lara

Bars (advanced ) and SCD cookies don't last in my house. Good luck at the doctor

today and hopefully all treatments will work together towards improvement.

PJ

> > >>>>>>

> > >>>>>>> We just want her to eat!!! It is so hard to see her health

> > >>>>>>> deteriorating and feeling helpless to stop it! Should we abandon the

> > >>>>>>> diet at this point to get some weight on her, then try again??

> > >>>>>>

> > >>>>>>

> > >>>>>> Before abandoning the diet, I would try just adding some different

> > >>>>>> foods. It's generally best to go slow and start with well cooked

> > >>>>>> veggies and some fruit, meat, and eggs/dairy if you tolerate them.

> > >>>>>> However, I think staying on the SCD at all is better than nothing, so

> > >>>>>> you could always try more advanced foods such as nut butters or

flours

> > >>>>>> to see if she will eat those and gain weight. The two things that

> > >>>>>> helped me gain weight were cheese and nut butter goodies, so if I

were

> > >>>>>> you I would try those. If they make her symptoms worse then that's no

> > >>>>>> good, but if there's not a noticeable difference, then those two

> > >>>>>> things would probably help her put on weight and keep the doctor from

> > >>>>>> criticizing the diet.

> > >>>>>> Hope that helps!

> > >>>>>>

> > >>>>>> Cheers!

> > >>>>>> Alyssa 16 yo

> > >>>>>> UC April 2008, dx Sept 2008

> > >>>>>> SCD June 2009 (restarted)

> > >>>>>> Azathioprine 75 mg 1x per day

> > >>>>>> Prednisone 12.5 mg 1x per day (trying to wean!!!!)

> > >>>>>>

> > >>>>>

> > >>>>

> > >>>

> > >>>

> > >>>

> > >>>

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

> > >>>

> > >>>

[Guest guest]

thanks Alyssa! how do you make the peppermint tea? were the ginger capsules

irritating at all?? with her stomach sooo sensitive i do worry about something

strong going in there.

suzanne

>

> > I use pepto bismal for nausea - but I never get it routinely - I'm

> > sure someone

> > else with more experience will jump in with advice for that one.

>

>

> Sipping on chilled peppermint tea really helped me. She could also try

> taking ginger capsules. I had nausea issues at the beginning as well,

> so I know what it's like, and it stinks! Hope one of my suggestions

> can help her!

>

> Cheers!

> Alyssa 16 yo

> UC April 2008, dx Sept 2008

> SCD June 2009 (restarted)

> Azathioprine 75 mg 1x per day

> Prednisone 12.5 mg 1x per day (trying to wean!!!!)

>

[Guest guest]

pj...thanks so much for your advice!! you are exactly right about the bm's and

sick feelings...that is what happens and she has told me she doesn't want to eat

because it will make her feel sicker. it is heartbreaking and i freak out when

she goes most of the day unable to eat until late afternoon somedays! it's all i

can do to get her meds down (twice now she has missed her am dose of pentasa due

to vomiting) so getting her vitamins/calcium/d down is out for now which is not

good!

dr. said yesterday that he wants her back on prevacid in mornings...thinks this

will help and he wants her to start drinking meal replacement drinks (boost or

ensure, etc.) when she can to get extra calories and nutrients. we are to call

monday to report weight. he also wants to put her back on prednisone low dose

for a short time to give the immuran more time to begin working...she's only

been on immuran for 2 months...he said it may take 3-4 months to really make a

difference.

i realize that the nutrient/meal shakes are not legal and this means coming off

the diet, which is very hard for me when we are getting close to the 1 month

mark...but her weight situation is forcing a decision of some sort. her dr.

didn't want to put her in the hosp. on elemental diet at this point but try

these other things first. I told him about the diet and he said he had heard of

it but made no other comments. he also suggested giving her a small amt. of

immodium at bedtime to help slow the bm's in the morning. this is all new to us

since she has just been diagnosed with crohn's and we don't know what sounds

right or not when it comes to a dr.'s recommendations. he also said he may want

to do another colonoscopy soon to see if there has been any healing or if things

are worse...and if worse he may consider remicade, which i recently read can

cause lymphoma! we are not happy with all the meds and are considering a 2nd

opinion. can anyone share their experience with dr., meds, etc....does this

sound ok??

i hate to come off the diet, but we must get her weight going up. has anyone

come off for a time and re-started at later date?? so hard to make these

decisions! thanks for any help, suggestions, advice, etc. anyone can share!!

suzanne

> > > >>>>>>

> > > >>>>>>> We just want her to eat!!! It is so hard to see her health

> > > >>>>>>> deteriorating and feeling helpless to stop it! Should we abandon

the

> > > >>>>>>> diet at this point to get some weight on her, then try again??

> > > >>>>>>

> > > >>>>>>

> > > >>>>>> Before abandoning the diet, I would try just adding some different

> > > >>>>>> foods. It's generally best to go slow and start with well cooked

> > > >>>>>> veggies and some fruit, meat, and eggs/dairy if you tolerate them.

> > > >>>>>> However, I think staying on the SCD at all is better than nothing,

so

> > > >>>>>> you could always try more advanced foods such as nut butters or

flours

> > > >>>>>> to see if she will eat those and gain weight. The two things that

> > > >>>>>> helped me gain weight were cheese and nut butter goodies, so if I

were

> > > >>>>>> you I would try those. If they make her symptoms worse then that's

no

> > > >>>>>> good, but if there's not a noticeable difference, then those two

> > > >>>>>> things would probably help her put on weight and keep the doctor

from

> > > >>>>>> criticizing the diet.

> > > >>>>>> Hope that helps!

> > > >>>>>>

> > > >>>>>> Cheers!

> > > >>>>>> Alyssa 16 yo

> > > >>>>>> UC April 2008, dx Sept 2008

> > > >>>>>> SCD June 2009 (restarted)

> > > >>>>>> Azathioprine 75 mg 1x per day

> > > >>>>>> Prednisone 12.5 mg 1x per day (trying to wean!!!!)

> > > >>>>>>

> > > >>>>>

> > > >>>>

> > > >>>

> > > >>>

> > > >>>

> > > >>>

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

> > > >>>

> > > >>>

[Guest guest]

thank you so much alyssa for sharing with me...it really helps!! it encourages

me to keep going and trying and helps me not get down about all this!!

i am going to continue with alot of the scd foods just because they are so

healthy and digestable...i know they are far better for her than " regular " food

and if she continues eating it she may develop a taste for it and that will help

if we decide to start again.

suzanne

>

> > i hate to come off the diet, but we must get her weight going up.

> > has anyone come off for a time and re-started at later date??

>

>

> Hi Suzanne! I'm sorry you have to go through all this, we've been

> through it too and it's just so hard trying to balance the meds, diet,

> doctors, and everything else. It's definitely a hard decision to make,

> going off the diet, but sometimes people are just too sick for the

> diet to do it alone. I went off the diet at one point for a couple

> months because of weight loss; I stayed gluten free during that time,

> mainly just added back some whole grains and I think some maple syrup.

> I honestly don't remember too much about what all happened, but I did

> go off and then restarted a couple months later. It's all a learning

> process, and even if you stop the diet now, you will have gotten a

> better sense of how it works and will probably be able to re-try it

> when she's more stable.

>

> Oh, and I'm sure someone on this list will suggest LDN =) Good luck

> with figuring out what to do, and I hope your daughter feels better

> soon!

>

> Cheers!

> Alyssa 16 yo

> UC April 2008, dx Sept 2008

> SCD June 2009 (restarted)

> Azathioprine 75 mg 1x per day

> Prednisone 12.5 mg 1x per day (trying to wean!!!!)

>

[Guest guest]

Hi Suzanne,

I know it must be horrible to hear different things and want to do best my your

daughter. The diagnosis alone is hard enough to take. I do think it is hard to

find MD's that embrace an alternative route, and especially in NC. I think there

are more possibilities in areas that are more diverse- NY, California. Do

remember though that you want your doctor to not embrace every alternative there

is- otherwise they would be doing all kinds of stuff to us. You want the doctor

behind the colonoscope to be doing it the best and most scientific way.

SCD poses the problem to traditional medicine because of lack of controlled

studies- due to lack of funding- yet the testimonies of people who it has helped

and the info in BTVC make it worth pursuing. In many cases this can go together.

With adults- what we eat and weigh within reason is not as serious an issue as

with kids- for like I said- nutrition, weight, growth and development go

together- and weight loss in kids is a concerning situation. An adult could lose

a few pounds without concern, but 5-10 lbs on a 60 pound child is big. You have

to choose what is best for your child with the circumstances you have.

I think you will be the best judge of what your child needs to get weight on her

and what to do. SCD foods are also well tolerated, and I certainly would not go

to junk foods. I know that people here have made smoothies that also have the

nutritional equivalent of Boost- but the trick is to get them in her and the

boosts may just taste better in the end. In the end- you have to do what you

need to do to help her recover, and conventional medicine is also necessary- and

the best research based help we have to date.

The diet was not intended to go against the doctor.

I wish other parents would add with their experiences. Perhaps when she gains

weight and her medication starts working, you can come back to SCD. Meanwhile-

whatever you decide- you can keep learning, practicing cooking new SCD foods,

and finding ones she likes.

Best wishes for a speedy recovery.

PJ

> > > > >>>>>>

> > > > >>>>>>> We just want her to eat!!! It is so hard to see her health

> > > > >>>>>>> deteriorating and feeling helpless to stop it! Should we abandon

the

> > > > >>>>>>> diet at this point to get some weight on her, then try again??

> > > > >>>>>>

> > > > >>>>>>

> > > > >>>>>> Before abandoning the diet, I would try just adding some

different

> > > > >>>>>> foods. It's generally best to go slow and start with well cooked

> > > > >>>>>> veggies and some fruit, meat, and eggs/dairy if you tolerate

them.

> > > > >>>>>> However, I think staying on the SCD at all is better than

nothing, so

> > > > >>>>>> you could always try more advanced foods such as nut butters or

flours

> > > > >>>>>> to see if she will eat those and gain weight. The two things that

> > > > >>>>>> helped me gain weight were cheese and nut butter goodies, so if I

were

> > > > >>>>>> you I would try those. If they make her symptoms worse then

that's no

> > > > >>>>>> good, but if there's not a noticeable difference, then those two

> > > > >>>>>> things would probably help her put on weight and keep the doctor

from

> > > > >>>>>> criticizing the diet.

> > > > >>>>>> Hope that helps!

> > > > >>>>>>

> > > > >>>>>> Cheers!

> > > > >>>>>> Alyssa 16 yo

> > > > >>>>>> UC April 2008, dx Sept 2008

> > > > >>>>>> SCD June 2009 (restarted)

> > > > >>>>>> Azathioprine 75 mg 1x per day

> > > > >>>>>> Prednisone 12.5 mg 1x per day (trying to wean!!!!)

> > > > >>>>>>

> > > > >>>>>

> > > > >>>>

> > > > >>>

> > > > >>>

> > > > >>>

> > > > >>>

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

> > > > >>>

> > > > >>>

[Guest guest]

i'd LOVE to have some input on scd smoothies that are equivalent with

boost...that would be awesome! my daughter was just asking me today about the

yogurt drinks she used to have and how she'd love one...i suggested we

experiment again with the smoothies and find one that won't send her to

bathroom. great suggestion...thank you!! going to continue many of the other

things as well. made a loaf of garlic/parmesan/herb bread today that is

gorgeous...going to slice and toast for " crackers " and see how that goes. )

thanks again!

suzanne

> > > > > >>>>>>

> > > > > >>>>>>> We just want her to eat!!! It is so hard to see her health

> > > > > >>>>>>> deteriorating and feeling helpless to stop it! Should we

abandon the

> > > > > >>>>>>> diet at this point to get some weight on her, then try again??

> > > > > >>>>>>

> > > > > >>>>>>

> > > > > >>>>>> Before abandoning the diet, I would try just adding some

different

> > > > > >>>>>> foods. It's generally best to go slow and start with well

cooked

> > > > > >>>>>> veggies and some fruit, meat, and eggs/dairy if you tolerate

them.

> > > > > >>>>>> However, I think staying on the SCD at all is better than

nothing, so

> > > > > >>>>>> you could always try more advanced foods such as nut butters or

flours

> > > > > >>>>>> to see if she will eat those and gain weight. The two things

that

> > > > > >>>>>> helped me gain weight were cheese and nut butter goodies, so if

I were

> > > > > >>>>>> you I would try those. If they make her symptoms worse then

that's no

> > > > > >>>>>> good, but if there's not a noticeable difference, then those

two

> > > > > >>>>>> things would probably help her put on weight and keep the

doctor from

> > > > > >>>>>> criticizing the diet.

> > > > > >>>>>> Hope that helps!

> > > > > >>>>>>

> > > > > >>>>>> Cheers!

> > > > > >>>>>> Alyssa 16 yo

> > > > > >>>>>> UC April 2008, dx Sept 2008

> > > > > >>>>>> SCD June 2009 (restarted)

> > > > > >>>>>> Azathioprine 75 mg 1x per day

> > > > > >>>>>> Prednisone 12.5 mg 1x per day (trying to wean!!!!)

> > > > > >>>>>>

> > > > > >>>>>

> > > > > >>>>

> > > > > >>>

> > > > > >>>

> > > > > >>>

> > > > > >>>

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

> > > > > >>>

> > > > > >>>

[Guest guest]

nut butter added to smoothies is delicious and adds calories, fat and protein. A

little coconut oil is good too. Try to sneak some healthy fats like this into

them.

PJ

>

> > my daughter was just asking me today about the yogurt drinks she

> > used to have and how she'd love one...i suggested we experiment

> > again with the smoothies and find one that won't send her to bathroom.

>

>

> A banana, frozen strawberries, frozen blueberries, some yogurt, and a

> splash of knudsen's blueberry juice is really good. I also sometimes

> add raw eggs for extra calories.

>

> Cheers!

> Alyssa 16 yo

> UC April 2008, dx Sept 2008

> SCD June 2009 (restarted)

> Azathioprine 75 mg 1x per day

> Prednisone 12.5 mg 1x per day (trying to wean!!!!)

>