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

[Guest guest]

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! Oh, gosh, poor thing! That sounds really hard. Have you tried making SCD gelatin with SCD legal juice? That seems like a nice light thing for when she doesn't feel like eating much else. That surprises me that she hates the almond flour...where did you get it? What recipes did you use? I think pecan butter is the easiest to make and also to digest for most, so I would start with that. Also, I don't know what usually makes her feel sick or sets her off, but if she likes/can tolerate butter, you can pretty much add it to anything. It's really good in the chicken soup =) 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]

How long has she been in this phase of not having any appetite?

Does she have fever as well? Have you checked her liver

enzyme levels?

Is she having a lot of gut pain?

Mara

> 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]

> 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?

yeah - that definitely sounds like die off - and that goes hand in glove with

lack of appetite (perhaps amplifying her general lack of appetite off of the

prednisone.)

Are you having her take daily epsom baths to help deal with general

achiness and any stomach pain - even if not severe - it can be a huge

help.

Also - have you joined pecanbread.com's list serve - the parents there

have lots of good advice for dealing with sick kids on SCD.

keep her hydrated during the mornings. Can you give her tea with honey

or a little broth?

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.

Mara

> 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]

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 trytaking 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 suggestionscan help her! 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 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.I just bought peppermint tea bags, and after steeping them in boiling water for a little while I iced it down. YOu cold drink it hot too, but I found the cool to be more soothing. I don't think the ginger would irritate her stomach since it's supposed to be anti-inflammatory. Just be sure she doesn't lie down or bend over too soon after taking it; it could give her heartburn. 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]

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 2008SCD June 2009 (restarted)Azathioprine 75 mg 1x per dayPrednisone 12.5 mg 1x per day (trying to wean!!!!)

[Guest guest]

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 2008SCD June 2009 (restarted)Azathioprine 75 mg 1x per dayPrednisone 12.5 mg 1x per day (trying to wean!!!!)