Heard from Doc today

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Sascot: OMG! your post made me cry! Good for him!

Dusty: Tears again. It is so hard watching. I am dealing with some health crap also and so not interested. Doc wants to know why am not worried or asking more questions...so easy when it is us but so hard when it is them:(

Catherine: I guess that might be an option. Doc appointment is Thursday and meet starts Friday. She went tonight before I got the message. Monday is Memorial Day here and no swimming, never swim on Sunday so I guess really just three days and hopefully doc will O.K. return on Thursday...am I moving into delusional land here?
 
Oh that is so reminiscent of C's adventures before diagnosis. And for awhile I blamed the latest xbox game, he played constantly so I decided he wasn't resting well.LOL Didn't help that the GP just kept saying virus,(Seriously? same virus 5 times over 3 months, does my kid have an immune system?!?)
So sorry she is feeling icky, I really hope you all can hit on something that will keep her on the up and up! I know it is hard, sending good thoughts your way!!
Steroids and puberty...now that has been an interesting adventure at our house! Yikes. 3 weeks left on taper!
 
:ghug: Sorry she is still having such a bad time.

Even when DS was at his worst GI still told us to try and keep things as normal as possible and to keep him swimming.
Ds would only swim one length rest then one more length. His coach knew why so she was ok with it.

:goodluck: with the appt and possible the next swim meet.
 
So Olivia got home from practice tonight and I explained the doc's request to her and she said and I quote, "well I gave up food for 6 weeks so I guess I can give up swimming and track for one". Where do these kids get their strength? Never taking the poor me attitude. I am so proud of all of them!

Next time tell me to shut up, take a deep breath and stop under estimating my child.

That said, if Thursday he tells us to stay out I will fight for her return!
 
Dusty: Yes, plan to up the shakes anyway but she is already drinking 7-9...one every two hours so not sure how much more I can get in her. As for sweeteners I have promised her a mani/pedi for each week on EN...bought her a new outfit from her favorite way over priced boutique in our village, and just today bought her a pair of TOMS that she has been wanting forever (even before I found out about the sports). I told a good friend of mine that I feel a little guilty for spoiling her. I loved her response, "there is a difference between spoiling a child and knowing when your child is facing a rough time and choosing to brighten their day"
 
That brings tears to my eyes. What a girl you have!!

crohnsinct said:
So Olivia got home from practice tonight and I explained the doc's request to her and she said and I quote, "well I gave up food for 6 weeks so I guess I can give up swimming and track for one". Where do these kids get their strength? Never taking the poor me attitude. I am so proud of all of them!

Next time tell me to shut up, take a deep breath and stop under estimating my child.

That said, if Thursday he tells us to stay out I will fight for her return!
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Oh man, what a champion!!! I bet you are fit to burst with pride and rightly so! :medal1:

Dusty. xxx
 
Crohnsinc, You're doing a fantastic job...and what a sweetie Olivia is!! Hoping this does the trick for her. LOL @ parenting by committee! and Tess, 30 year olds? bahaha! Do you still have a baby shower with briefcases and law textbooks? SUnny dreamland with a dose of Mt. Sanity...SO stealing that, Dusty!
 
Sorry I'm a bit late here... haven't had much time the last couple of days!

But read on another post that Olivia's weekend is going well!! Woohoo! :banana: And, truly, what a champion - I think having to sit out their favourite activities must be the hardest thing they face! I hope her doctor approves her getting back to track and swimming on Thursday! And, I LOVE your friends comment about spoiling - she is so right! :ghug:
 
Angie - re the baby shower... Heck, YES! But, it's a catered affair, the mom doesn't look like a balloon and can wear high heels and, since the 'babies' earn more than I do, they pay for it! LOL
 
Love this forum, a good laugh amongst the stress/tears! Olivia sounds like she's coping just great! I am also trying to find little "treats" for Andrew when I feel he is having a rough time. He got a fantastic report from school last week so we are going to buy him the new football strip which comes out on Friday. It's nice to bring a smile to their face! Hope the doc approves going back to swimming.
 
Just back from O's appointment and wouldn't you know it big, messy, loose, bloody stool in the waiting room bathroom:ymad:

Anyway, she had a great weekend. Filled her time with social activities and even found time to help me with a ministry I am running to feed the hungry. It was an awesome weekend. She has looked great all week so we were assuming her energy dip and overall feeling bad is not enough nutrition.

Doc started out defending his no sports decision. Said he always supports staying involved but when you are feeling bad you have to know when to take a break and if she won't do it he will do it for her.

Said problems were "probably" due to not enough going in. She burns a gazillion calories and he would really like to see 5 more pounds on her. Gee the committee decided that long ago. He said he just got back from a conference where they debated EN and food he said he is willing to try 10% from food 90% from formula. O was over the moon as she was afraid of adding the tube. So she is allowed one small meal a day of pasta and boiled chicken and a little red sauce or chicken broth. Keep up 8 shakes a day.

We bargained to dropping track..we didn't tell him it is over next week anyway:whistleinnocently: Swim ends in end of July and then she has a month long break.

He moved her Remi infusion up to Monday. Just two days sooner so not sure why he did it other than he is anxious for blood results or didn't love what he saw in front of him?

He OK'd mission trip last week of June cuz at least that will keep her out of the pool. Just can't do certain assignments because wants her away from possible TB exposure with the Remi.

All in all a good day. Can't wait to see what the blood shows.
 
Glad it went well!! I'm sure she's ecstatic to be able to eat 'something', 'anything'! :)

Hopefully, with that extra bit of food and the end of track, that will help her gain a few pounds!

Hope you start to see more improvement soon!!! :ghug:
 
Sounds like things are going quite well. Hopefully the Remi infusion will help extra too. Hope it keeps going ok and blood tests come back good
 
Thanks for the update hun. :)

So fab to hear the weekend went well! :thumleft:

The appointment sounds like it went well too. I hope the tweaking of her diet and the Summer break helps things along...:goodluck:

Dusty. xxx
 
Sounds like things went well for O! So happy for you guys and hope the next Remi helps it right along and she can enjoy all those summer activities!
 
Wow had to go to the second page and halfway down to find O's thread. Almost hate to resurrect it...

Got an email from the nurse today and she said O's basic blood results have all improved! Yes she used an exclamation point! The exclamation point and the fact that they made me wait 4 days for the results makes me think that the EN did it's thing!:dance: Even with colonic involvement and the prior use of Prednisone!

I asked her how we are proceeding..when next follow up, transitioning off EN, Remi cycle etc. She said she will advise tomorrow after speaking with doc and they still need the Remi levels but that won't come back till next week. Even if we transition off EN, I am still planning to have her drink a couple shakes a day to help with weight gain.

Oh and finally got weepy rash checked out by a derm. Infected eczema. She has only been walking around like this for a month or so :ybatty: Gave us an antibiotic, and wants her to use Zyrtec at night for rash around eyes.

We are so excited and walking on air tonight. Still have to get that energy up, weight on and swimming to pre crohns level but happy, happy girls here in CT. Thank you all you EN Queens and little princesses and princes:worthy: You inspired us to try and keep at it and we both thank-you! :hug:

Going to post on EN thread and maybe even success stories now.
 
:dance::dance::dance::grr1d::grr1d::dance::dance:
Well isn't that just the best news!
I'm so happy for you both.
What a blessing the day has brought!


Farmwife
 
:panda: Super news! :panda: Such a great feeling when you get good results! :dog:
 
Yay!! :emot-waycool: That is great news, she has done so well. Was just thinking about you last night wondering how things were going - glad to see your good update!!!
 
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What a fab update! May it keep on keeping on hun! Wishing you all the luck in the world!
​

:mademyday:
Dusty. xxx
 
Whining alert!!!!

:voodoo::voodoo:Stupid Crohns:voodoo::voodoo:Stupid Remicade:voodoo::voodoo:

Just got back from the infectious disease doc...the one who nixed Olivia's Ecuador trip...the one Olivia calls the devil doc:devil: Well she also nixed the trip to Tanzania:cry:
She says she would NEED the yellow fever vaccine and on Remi they can't get live vaccines...also said risk of TB too high...stay out of developing nations...poor kid.

Then got home only to see the e-mail from docs office re: going foward. Seems she is metabolizing the Remi too quickly and on the highest dose...this explains why at 3 weeks she starts feeling badly...so we are now down to every 5 weeks hoping that the EN did enough. Oh yeah and then the nail in the coffin...no further transition to food...Just make the pasta/chicken snack into a meal. So more boiled chicken and pasta. And he wants to see her next week...feels like we were just there....

And just when she was really feeling on cloud 9. Seriously thinking all day how great she looks and how great bathroom results are (the best since she came off prednisone).

I told her to try to hold on to those thoughts because really this is not all that bad...but mom doesn't know jack!
 
:voodoo::voodoo: Crohns sucks!! :voodoo::voodoo: So sorry to hear this!! It is so hard for the sweeties to try and lead normal kid lives when Crohns tends to snatch things away!! I am so sad for your O!!
I'm on my mobile, and it freaks out with the forum but didn't she just get to start on the food transition recently? So now she will be able to keep the chicken and pasta but not add any other foods? Sending hugs and good thoughts yours and O's way!:heart:
 
Poor O, give her a big country hug for me!:kiss:
Ok, I feel so bad for her...
Tell her I will send my rolling pin so she can beat something till she feels better. :ywow:It just can't be a human, animal, personal property of someone else or.....she can beat the rug. Get all the dust out. It will do mom a favor too. Aren't I sweet.:D

Farmwife
 
Aw thanks!

Don't you just love stabbie...he really makes me feel better.

Right...she was having a cup of pasta and 3 ounces of chicken. Now she can have 5 ounces of boiled chicken and a cup of rice, pasta or potatoes...woohoo..paaarty!
 
Farmwife...lmao yeah include some honey cookies and pastry shells in the package and you got a deal! How's the ride?
 
Oh that's just great!:thumleft:
I'll send some honey cookies and O will eat them and get even more sick
and probably beat you with the rolling pin. :eek:rder:
Great idea MOM!:thumright:
Farmwife

Some one needs to talk to some one else about making a smiley whacking a rolling pin.:shifty:
 
Aww, I'm sorry that O got all that bad news! :ymad: How disappointing for her.

I'm sorry about the trip... I guess nothing will change the vaccine problem (simply due to Crohns and even without medications, we were told Stephen can't have any live vaccines).

But, I hope having the remicade more frequently will get her going with her diet! How long has she been on EN now?

:ghug:
 
So sorry about the mega-whammy of news! Tell O we are thinking about her and you too! Crohn's DEFINITELY sucks! Things are crappy here too (no pun intended)! You tell her to keep her chin up...Dr's won't admit how much attitude and stress have to do with this, but it means alot. She needs to keep the faith!

Might be a good time to find a mission close to home. Ryan's favorite is walking dogs at the animal shelter. Our shelter has been overflowing since last year's tornado. We also cook dinner for the fire station and eat with them sometimes!
 
Farmwife: honey cookies=beating mom lmao...rollling pin smiley...well if there is one Dusty will find it!

Tesscorm: she has been on 6 weeks now. I kept telling her not to count on coming off but after the doc added cup of pasta and 3 ounces of chicken a week or so ago and basic bloods came back so positive she was confident there was going to be more. Hard with all the end of year school parties and bas and bar mirzvahs...she also has her cousins wedding coming up.

jmk: sorry to hear things are crappy. O does do mission work in the city near us. Also she is going to York PA the last week of June for a Week of Hope mission trip. It was just that she had to apply, be interviewed etc for these trips and got accepted...it was a huge deal. She became good friends with the other kids over the months preparing and now they go and she stays home..just hard. Funny thing is our youth director resigned and that opened a chaperone spot on the York PA trip. They asked me to fill in. I asked her if she minded she said no...now with the extended EN and the special meals she may need I guess it was in God's plan all along that I be on that trip! Plus she will be in her last week before Remi so I get the added bonus of watching her like a hawk...do ya think she will let me follow her into bathroom for poop inspections:shifty:

Any of our Crohnie friends near York PA? Holla!
 
jmk: oh yeah and about attitude...our doc totally agrees that O's sheer determination and will has definitely made a difference so I am glad about that. By 6:30 she was cheered up and perusing the net trying to find another trip the family can take at the same time as the mission trip...ITALY! Yeah probably cost as much as Farmwifes new ride...before insurance!
 
How is far is Connecticut to York?

My daughter has a swimming trip to Canberra, and I am having a hard enough time let her go on she own.

It only 2 hours by plane.
 
I am so sorry the doc nixed her trips! If you can afford Italy it is fantastic. I got to go with my Father years ago in 11th grade. He went on a business trip and took me with him. We went to Rome I will never forget it and hope to get back there someday. Have you thought about LDN for her? Caitlyn also metabolized the remicade super fast and it never lasted more then 3-4 weeks. I hope you guys have a good time in York PA meanwhile.
 
That's heart breaking about the trips! It is very hard to watch them excluded from things because of crohn's. I a so sorry. I hope that another trip presents itself. You are right...God's plan!

We are anticipating some problems with activities too. R plays saxophone and wants to march in the high school band. Not sure he can handle 2 weeks of 5 hour days of band camp, bus trips, monkey suit in the heat........ He can still play in concert and jazz/blues band, but he is so looking forward to jammin' in the stands at the football games!
 
Catherine: York is about a 4 hour car ride. I was fine with letting her go since we could get to her pretty quickly but now that the youth director resigned so I get to go! Sleeping bag on hard floor with 50 girls in church hall with no a/c eating crap food. Showers every other day..5 hours of sleep lots of manual labor..don't be jealous! Watch out Farmwife will be on here any minute telling me sounds like a vacation to farm people!

Kim: I mentioned LDN once to our doc and it didn't get a warm reception. If he decides we need to change course I am bringing it up again! And no I don't think we can afford Italy...not with mu oldest going off to the most expensive college she could find and no scholarships:ymad: But really I am happy for her. It was her dream school and a reach and she got in...I am happy, I am happy, I am happy

JMK: Oh marching band is so fun! I hope things settle down for him so he can do it. But really like I just told O this morning...you are so blessed to do the things you are doing revel in that!
 
No that's not a vacation!!!!!!!!:ymad:
Do you know where farmers go on vacation???????????:shifty:
Anywhere but their farms!!!!!!:ytongue:
HA! You think you know me but you don't.;)
I'm glad you get to go. It will make memories for years to come.
Take a journal and write everyday.
:ylol:I want to read about it and laugh me head off!!!


:soledance:Farmwife
 
No electronics on the trip either...I will hyperventilate not knowing how all my little crohnies are doing and wanna laugh...they assigned me to the kitchen! I get to do all meals and snacks..poor poor kids. I would love to try to make things healthier but the budget is like a dollar a meal per kid...they get super crap food but I am sure ALL low residue so if O is eating by then at least she will begood...so much for my only adding in the best foods...
 
:D


Farmwife
That's all I'm saying. I swear no jokes about you cooking at the camp. I swear.
I promise not to even comment on the possible emotional scarring to you or the campers because of the food, I promise.
You have my word that I will not utter the possible ways food born illness can effect poeple, You have my word.
 
Gee - a dollar a day, sure can make a banquet with that! Can't say I'm jealous of your trip with all those kids!! I help out at a mother & toddler group at the church (a fact that amuses my friends since I don't particulary like little kids;) - but I hide in the kitchen and make snack and tidy up at the end. The one time I ventured out of the kitchen I tried to stop a toddler from running into the minister's office and fell flat onto my face - broke my nose :ywow:
That's a shame she can't go on her trip, think I would rather Andrew avoided any place that needed lots of vaccines whether he was on meds or not. My daughter started a 6 weeks episode of screaming with pain in her bottom 12 hours after having one of her pre-school vaccines. Never again!
Sorry O is having to decrease the time between Remi infusions and is not able to eat anything more exciting!! Thinking of you both.
Pity you can't make it to Italy - we end up there as part of our cruise this July - we could have met up!!
 
Haha yeah give me the teens anyday. Broken nose yikes!

CRUISE! Why didnt I think of that? Back when Ecuador was nixed the infectious disease doc said no cruise because of germs and her suppressed immune system. But she was a lot sicker then. I think I will check out cruises because they are usually more economical! THANKS!
 
Worth asking about it! I have been going on about the cruise to all the nurses/GI/paediatrician ;) and no one has ever even suggested that Andrew couldn't go even with the Aza.
 
crohnsinct wielding the rolling pin of destruction! At the ready to beat the crap out Crohn's!...
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...and not forgetting her trusty side kick!
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Dusty. xxx
 
Just got back from Doc and seems my paranois over having to drag in so soon after last bisit and after infusion was a big fat nothing. He had nothing up his sleeve.

O gained 2 pounds since adding back that bit of food and stopping track! We can add another meal next week.

Doc also said that this is the best he has seen her since dx and said we can extend out our monthly visits to 6 weeks!

Still doing our happy dance here in CT:banana: would send a pic but probably not half as attractive as Tesscorm's dance.

Hey Dusty..how come my rolling pin smiley is the one acting all crazy, ranting and raving like a lunatic and Farmwife is all sweet and pink with a bow in her hair? Typecasting?! Ah hell, I don't care we ARE beating the crap out of crohns today and it feels great!
 
Just catching up on this thread!! :rof: You all certainly put a smile on my face! :D

So glad O is doing better! Woohoo!!!!!! Another meal! :) Glad the weight is coming on!

Happy dance... well, I have until October to meet the new GI... time enough to make sure my 'belly' dance doesn't resemble a 'jelly' dance! :ylol:

We're thinking of a cruise too! :D Just after Christmas...
 
:yoshijumpjoy::yoshijumpjoy::mario2::mario2::mario2:

On the weight gain and the bump out on appt's
ALways a good thing
 
yippee20happy20rabit20dancing5.gif


What an absolutely fab update! Soooooo happy for you and O that I am fair grinning like a Cheshire cat! :biggrin::biggrin::biggrin:

Dusty. :heart:

PS...Farmwife got the sweet, pink one with a bow in her hair 'cause she is a nice country girl!...:eek:utahere:​
 
Hi all! We are back from our mission trip. The week was amazing but exhausting.

I didn't poison one child with my culinary delights so there:hallo3:

yOh yeah and some guy riding a stolen motor bike ran into my car doing thousands of dollars of damage and drove off hitting yet another car:ymad:

I posted elsewhere that O got a "crohns" stomach ache Friday before we left and Saturday looser stools and bit of blood started. I brought the Prednisone with us to ward off evil and it seemed to work. O felt fine and reported that bm's were fine. BUT even though we added even more food, she had a week off from swimming and had a physically easy assignment (she was in a/c office collating and putting together kits for a non profit organization that helps inner city kids) she still lost 3 pounds last week. WTH? If it isn't Crohns related I want the secret!

I have to admit I was too busy to watch her like a hawk so I am not 100% certain she kept up her shakes but with all the food we added and no swim practice I wouldn't expect that kind of loss. I am now wondering if her version of "fine" really is fine and anxiously waiting a visit to the bathroom.

No big deal given what eveyone else is dealing with these days just frustrating. Next infusion is 7/9 guess results from blood tests will tell.

Oh yeah and my 18 year old got her license while I was gone...now she really doesn't need me for anything but tuition bills!
 
Glad the trip went great! Sorry about crazy stolen motorcycle guy...ooh that might be a great comic book villian..Out of nowhere to damage and defile cars everywhere comes crazy stolen motorcycle guy!
Hmmm....we could make O and all the other ibd kids the team of super heroes...waiting to swoop in and save the day!
I hope I's weight loss is some kind of off schedule/mission trip fluke and evens out now that you guys are back home! I know what you mean about their idea of fine! Hopefully this works itself out!
Yay on the older one's licence!! I do miss the talks from driving my oldest everywhere and C gets his in....oh my goodness 3 more months!!!
 
Glad to have you back!! Sounds like you had a good week. Sorry to hear O has lost more weight - maybe she has just done some growing!! Or if she didn't swim for a week maybe she lost a bit of muscle tone, I'm sure that would be worth a couple of pounds. See plenty of normal reasons to help you along!
 
Ah yes Sascot...must return to sunny dreamworld! Thanks for the directions!

Didn't think of muscle tone...hmmm. But really I am quite sure she just eased up on the shakes too much. Last chance swim meet to qualify for state championships is this weekend. I will spend the week fattening her up. She went to bathroom and all looked good...just a lot of mucus and a very little bit of blood.

Oh and here is more fuel for all you city haters..there was a shooting a block away from where we were staying and we had to pass that spot on our way to the showers at the local high school! But really we were in the poorest part of the city.
 
I didn't poison one child with my culinary delights so there
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Ha! That you know of! :lol:

So fab to hear that all went well hun...:):):)...sorry to hear about the continued weight loss though, that's a bummer. :thumbdown: Yeah I always wondered about the whole 'fine' thing too and I know full well with Sarah that pain became such a constant in her life that it became normal, man it breaks my heart to think about it. How is O now?

Ah hell we shoot all the time, only difference is we don't shoot people! :biggrin:

Oh wow! Congrats to daughter on getting her licence! Deep breaths Mama! :ytongue:

Awww ya missed my arse... :kissgrits::kissgrits::kissgrits::kissgrits:...now don't say I don't do anything for ya! You best put ya sunnies on though cause ya might be blinded by the light!

Dusty. :headbang:
 
Glad you had a good week (with the exception of the motorcycle!:ymad:). Great to have you back! :D

Hoping O's weight loss was just a combination of different schedule, fewer shakes and just a bit of muscle loss. Hope it all settles this week! I'm sure mom's 'culinary delights' will fatten her up quickly! :lol:

Congrats on the new driver!! :)eek: one more worry for a bit! :lol:)
 
LMAO Dusty!

O is feeling fine and the bathroom doesn't look bad so I think we are fine. Poor kid though. She begged me for a bikini. We shopped for weeks and NOTHING fit her...not even kids size 8. We finally found one. She has a friend over and they are swimming. I am looking at her and if I weren't her mom or knew her story I would be thinking anorexic for sure. Her ribs are still sticking out!

I think she was a bit freaked at the weight loss also as yesterday she was half hour late for her shake and she came running into the kitchen. Poor kids...they shouldn't have to worry about these things.

Bahaha surprised none of you blamed her weight loss on my horrible cooking....or did you?:shifty:
 
crohnsinct said:
Bahaha surprised none of you blamed her weight loss on my horrible cooking....or did you?:shifty:
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Awww Crohnsinct, what more can be said! :eek:utahere: Thank God for those shakes! :worthy:

:Karl:


(May not be on much this week - crazy week at work, Stephen's GI apptmt tmrw and Emily's rheumi on Thursday! :eek:)
 
Oh no...Stephens last pediatric GI appointment:( Will be nice to check in and here what he has to say at least. Finally getting in to that Rheumy!
 
Yes, will update on Stephen's apptmt but am not expecting much... (gosh, think I'd go nuts if I couldn't recount what was said and get everyone's feedback! :lol:) Hopefully, I'll get some clarity on why his inflammation seemed to be 'okay' to them??? Perhaps they are happy to keep him on EN only as long as the inflammation stays under control??? And perhaps this is why he's had ultrasounds and MREs every six months??? (Funny, because when the clinic desk told me the doctor had ordered the second ultrasound and MRE, I did wonder why but, we were rushing to leave and I thought it must be 'routine'.) We shall see... :)

And, yes, FINALLY, Emily's rheumi apptmt! OMG, this has been on hold since Feb/March!!! Not worried as rheumi was very confident that results wouldn't show any problem (OMG, would totally throw me if we're told that 'oops, results DO show something!) but would like to move on with knowing her iron levels, still low?, why?, etc. We've had to cancel twice because of Emily's job and she wanted to cancel AGAIN! Told her I was washing my hands of it if she cancelled again! :lol:
 
we did secretly blame your cooking - we just didn't want to be mean to you as soon as you came back ;)
 
Can I get pissy for a minute?:yrolleyes:

I know it is no where near what poor Mary and Rowan are dealing with but I did our weekly check in Monday a.m. via e-mail to both the nutritionist and nurse and asked what the next food is we could add and didn't hear back yesterday. So this a.m. I am thinking nutritionist is on vacation even though I didn't get an out of office message but still I called this a.m. on nutrition line and left a message asking if she was on vacation for person covering to call us. 5:10 p.m. the day before a holiday and still nothing. What gives? I would like to see them go without food for six weeks and then slowly get one or two things a week added and see how they feel. The poor kid is so sick of boiled chicken, pasta, sweet potatoes and melon she is going to puke. We have a huge party to go to tomorrow with tons of awesome food (yes that's right I didn't cook any of it) and all I can give her is the same old. At this rate if she has to do this again in the future I am not so sure she will want to.
 
Awww...that is awful and go right ahead and get pissy. I think it is so awesome that O has commited to the EN and remained compliant. I can't imagine how hard it must become to stick to only a few foods and mainly liquids!! That just makes me so upset for her. Doctors are so quick to rule out EN due to compliancy in the US and here she is giving it her all and they won't return a phone call.:ymad: I would have a few choice words for them when they did get back to me! Tell her we all think she is awesome for the determination and commitment she has had with this treatment!!:ghug:
 
I don't ever want anyone to go against their GI's instructions but... as you're not getting any response from the GI, here's Stephen's reintro diet and, perhaps, without going too far beyond the instructions you've received, you can add just one or two things for O. I've posted Stephen's reintro diet in more detail on other threads (couldn't find it anywhere!) but, here it is in a condensed version (sorry, it's midnight already here!! :blush:)

Each step was to take 3-4 days (everything was low fibre, low fat at the beginning)...

1. 'white' foods - white bread, pasta, rice, plain crackers, plain muffins, rice krispies or plain cereal (no milk). He was allowed a little bit of sauce or flavouring like butter, low fat cream cheese, etc. but just a BIT.

2. proteins/meat - any type but I stuck mainly to chicken, fish, eggs

3. soft fruits/veggies - no skins, seeds or membranes (skin around orange segments)

4. low fat dairy

... all else as tolerated.

Hope that helps a bit... :ghug:
 
There is nothing worse that sitting waiting around for people to phone back :voodoo:. I still believe with alot of these docs, etc, it is out of sight out of mind! They forget there's a child at home desperately waiting for the answers - so you may rant as much as you want!:)
I can't remember much about the reintro of the diet but sounds like Tess has it covered. I remember tomato soup being one purely because I thought it would have been too acid for the stomach! Other than that definately white bread and rice, cooked veggies, bananas, potatoes. I always think sliced banana on toast is a nice treat. Keep nagging them!
 
:voodoo::voodoo::voodoo::voodoo:
I think these healthcare professionals do this day in day out and they forget that actually the things they do and say (or don't do and say) have an enormous effect on peoples lives - I really hope you hear soon - how frustrating.:ghug:
 
Our re-introduction was just as Tess has laid out. When it was time to introduce fruits and veggies we did canned pears (canned in pear juice), canned peaches (canned in less healthy syrup) and cooked apples (think chunky apple sauce with a touch of sugar). My son doesn't like bananas so we didn't do them.

I was always dismayed at the lack of guidance when it came to re-introducing foods.
 
It really sucks when people don't return your phone calls/emails! I agree, when it's time to start eating again, you shouldn't have to wait around to find out what's ok!
When we reintroduced food we were instructed pretty much the same as Tess has laid out. At the time, however, both the dietician and the GI mentioned that they really don't know the best way to reintroduce food yet... that there are lots of different theories from just starting back eating a full menu to doing elimination diets so they were just suggesting something in between. Lots of soft food, low residue. I don't think there is a lot of research out there saying one way is the best. But, my son said that first piece of white bread was the best ever!

Oh ya, a speaking of appointments - we just got a letter with a date for my son's first adult GI appointment - it's in August already, a month before his next scheduled appointment with the pediatric GI... I was amazed and a little surprised that it was happening so fast. He doesn't turn 18 until March. Here's hoping we like her and it goes ok!!
 
I read about your trip. Before the joke comes let me say that I'm glad you had a good time. Doing the Lord's work is the most important thing you can do.

Sorry to here about the damage to your car and the gun shoots.
Beleive it or not the same thing can happen on the farm.
Like a tactor backing up and crashing into your car then the tractor back fires. I guess that's the difference between the city and country.

Farmwife
 
Do you hear that loud drumming noise? It is the sound of my fingers tapping on my desk waiting for a call back:mad2:
 
Oh Yeah they called on my cell phone at 3:30 while I was lost in the countryside trying to find the pool for the swim meet and stressed to no end that we were going to miss the check in. We didn't! We should have. She had a very rough meet. It was disgustingly hot though so here is hoping that is the answer. She has now gone three times today with a lot of mucus, a good deal of blood and d is starting...could be the heat? Could be infusion is due? Who knows.

Anyway, good news is the nutritionist added 4 more foods and O is very excited about that but then she says she is VERY concerned about the loss and wants to see her up a good deal by next Wednesday (infusion).

We are staying over in a hotel at the meet. Just O and I...a treat after the mission trip. But she was chowing down like a hound... I told her to slow down she said, "I HAVE to gain 5 pounds" Poor pumpkin.
 
Yay on the four new foods!!!! Booo on mucus, blood and D!!! I am so glad the nutritionist finally called did she mention what took so long? It's good that she has an appetite!! We are just going to think really good thoughts about the poo issues and they will hopefully find their way out the door!! Good luck with the swim meet, O!!!
 
What at absolute trooper she is hun! :hug: She must make your heart sing. :)

So good to hear they finally got back to you and she has new foods! Now for the other to settle down and stay away...:voodoo:

Sending loads of love, luck and well wishes your way!

Dusty. :heart:
 
More slow swims today. 6 seconds slow on the event she was only 1 second away from qualifying on. She said she is very tired but not Crohns tired...whatever that means...guess she should know.

One of the new foods they said we could add was lettuce:eek: She LOVES salad. She had her first one after the meet for lunch. Two hours later D and at the risk of getting too graphic (is that possible here) there was undigested food (couldn't distinguish what but O said it takes two days for food to move through so probably what she ate Thursday - how cute is she). What does undigested food in poop mean for Crohns? Does that mean just normal diarhea like maybe the salad just didn't agree with her or is the D getting worse? Maybe I am getting too paranoid...definitely bored..Nothing to do here in the country. Back at hotel now resting for a few hours before dinner so thought I would bother you guys with my mundane questions...you can thank me later!
 
Well, thank you! Not sure what undigested food means for Crohns' itself - in a "normal" tummy, I would just assume that the food wasn't chewed enough. :)
Hope the food isn't causing any issues. These kids are cute - who would think they were old enought to know about different types of tiredness :lol:
 
Uh! So sorry O is having problems. It could be that the undigested food just means she wasn't ready for lettuce. Sometimes when Ryan eats something he can't tolerate, it will push everything else out whether it's digested or not just to get rid of the bad thing he ate. I hope that she puts on a few pounds before wednesday. Ryan started losing when we added some food, so we have backtracked to more EN. He is really only absorbing the calories from the boost. Maybe her tiredness is from not absorbing nutrients from the food as well, like Ryan is doing? Those boost have a lot of vitamins in them.


Tell O to slow down and chew that food! Keep the faith and go get those docs if you need to! Need me to come with you?
 
Not to butt in, but....lettuce? Really. Raw greens are one of the last foods that I am adding on my elimination diet after EN. If you think about how you would begin to feed a baby when starting food, it is kind of the same idea after being on EN for awhile. If you really want to add greens, try them cooked first...and small amounts at a time. Any fruit and veg added for the first few times should be cooked, so it is easier to digest them.

Hope she feels better soon.
 

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