03-12-2011, 05:18 PM
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#1
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Super Moderator
Join Date: May 2010
Location: New South Wales, Australia
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The Worried Mum's/Dad's/Carer's Club!
About this Support Group
I thought I would start this thread as a place where you can put down your worries and fears about your kids. It doesn't have to be IBD related, it can be about any issues you are having with kids no matter how small.
I think at times we stew over things but don't feel they warrant a thread of their own. Also you may have problems with your non IBD children and just need a friendly ear.
Okay, so I will start this off.............
Roo emailed me this morning and said when she was out at a concert last night she had really intense pain in her side. When I questioned her about it she said she hadn't had this sort of pain since she was 14!  . It is nowhere near as bad this morning and she has no other symptoms, if it persists she will go and have it checked out.
I'm worried!!!
Dusty.
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__________________
Mum of 2 kids with Crohn's.
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03-12-2011, 06:13 PM
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#2
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New Member
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try not to worry... the fact that it's subsided, and there's no other symptoms, are good signs... she possibly pulled a muscle singing/dancing at the concert, or even sent one into spasm, which can be really painful. or it could be mid-cycle pain, if the pain was more towards the tummy on one side, just inside of the hip bone.
she sounds a sensible girl, and i'm sure she will see the doc if it persists, but i bet it just calms down on its own.
good thread idea, by the way.
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03-12-2011, 06:38 PM
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#3
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Moderator
Join Date: Mar 2011
Location: Florida
My Support Groups:
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Dusty, try not to worry too much 
Easier said than done right ?!?
I can't even imagine how I am going to feel when Gab leaves for school and I can't "see" her for myself. It's bad enough when she's standing in front of me and says, mom my "alien baby" hurts and I try to keep that straight face and just simply ask, "what do you need?"
It's nice to know that Roo still lets you know when she's feeling things that aren't quite right tho!
I'm quite sure you live on pins and needles wondering ...what next
Argghh...this damn disease !
__________________
~T~
Mom to Gab (20)
DX: Crohn's 2/2010
and Austin (18)
DX: Crohn's 7/2013
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03-12-2011, 06:40 PM
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#4
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Moderator
Join Date: Mar 2011
Location: Florida
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btw...for the record....Gab calls her "mass" her alien baby LOL....
I told her we will have a funeral for the little alien after her surgery
Keep laughing ! It's healthy for the soul !
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03-12-2011, 07:10 PM
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#5
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Super Moderator
Join Date: May 2010
Location: New South Wales, Australia
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Thanks ding and Tracey......  
I think it helps just putting out there, I know you guys know what I mean.
I have been thinking, shock/horror!, and I wonder if it does settle if it could have been a partial obstruction?? She would have to have some sort of narrowing at the anastomosis. Anyway, thinking happy, non Doomsday thoughts.
Ahahaha, love the alien baby! Do we get to give it a name?
Thanks, 
Dusty
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03-12-2011, 07:15 PM
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#6
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Moderator
Join Date: Mar 2011
Location: Florida
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Did they remove Roo's appendix during her surgery? (I'm sorry, I did read ALL your previous threads...but just can't remember that for some reason) I am assuming they did...but, was just thinking that if they didn't maybe it's just an inflammation there ?
I have chronic appendicitis for 9 years now and they have yet to remove it....it's an awful pain now and then. (esp the last 3 days! ouchy) I think it's about to calm soon tho...I can feel it
And, Gab couldn't think of a proper name so she just refers to it as "alien baby". Every single time she says it I can't help but smile a little hehe.
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03-12-2011, 07:21 PM
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#7
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Super Moderator
Join Date: May 2010
Location: New South Wales, Australia
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You know Tracey, Dex once said something to me....................
"The worst thing that happened in my life didn't happen to me".
I reckon we can all relate to that and it sums it up nicely. Yeah, we will keep on laughing and cherishing the good times!  
Dusty.
Last edited by DustyKat; 03-12-2011 at 07:26 PM.
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03-12-2011, 07:25 PM
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#8
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Super Moderator
Join Date: May 2010
Location: New South Wales, Australia
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Oops...........too slow!
Yeah, they did remove it. They actually thought they going in for a simple appendectomy and look around, hmmmmm didn't quite work out that way!
Good on Gabs, what a wonderful attitude! It will get her a long way in life.
Dusty.
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03-13-2011, 04:56 AM
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#9
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To save time...Ask Dusty!
Join Date: May 2010
Location: Kentucky
My Support Groups:
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God knows I'm a member of this club!!
__________________
Mark, father of EJ
EJ dx w/ Crohn's 12/09
PSC 3/10
No more 6mp
Currently in the Humira Club
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03-13-2011, 09:24 AM
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#10
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Moderator
Join Date: Jan 2010
Location: St Helens, Merseyside, United Kingdom
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Hiya Dusty
Roo will be ok, she is so sensible and knows the score.
And the fact that her symptoms have died down indicates that she'll be ok.
I'm a lot worried and concerned about Jessica (19) she's away in Leeds at Uni.
But she's ill, and I can't tell you what with at the mo, I'm too upset, I've confided in Pen tho. I feel so hopeless, cos she's so far away. All I can do is reassure her over the phone that she'll be fine, but I know she won't.
We're getting thro this, our GP has been fantastic. He gave her a few scripts to take back with her should she flare up again.
And no, it's not an IBD
__________________
Joan
Dx Crohn's in TI 2005 symptoms for 15 years prior
BEEN ON -Azathioprine, 6MP, Prednisolone, Pentasa, Budesonide, Metronidazole, Humira, Methotrexate,
NOW ON -Amitriptyline 25mg
21/02/14 Right hemicolectomy surgery
http://www.facebook.com/#!/profile.p...4208290&ref=ts
No-one should make you feel inferior without your consent!
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03-13-2011, 01:21 PM
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#11
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Your Story Forum Monitor
Join Date: Jan 2011
Location: Alaska
My Support Groups:
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I feel for you parents with sick kids. We are in limbo with Alex. I sincerely hope that he does not have an IBD. If he does, I know it won't be the end of the world. I'll be frequenting the parent section more. It's easier to be the one with the disease than to see your child suffering.
__________________
Diagnosed with Crohn's Disease in 2005
Pentasa 2x500mg (4 times a day)
Zofran (as needed for nausea)
Ginger Capsules (for Nausea)
Multivitamin
Zoloft 150 mg
Ranitidine 150 mg (2 times a day)
Entocort 3 mg (3 capsules by mouth for 8 weeks, then tapering to 2 capsules for three months)
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03-13-2011, 02:53 PM
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#12
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Super Moderator
Join Date: May 2010
Location: New South Wales, Australia
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Hey Joan,
Thanks hun. I have been thinking about her pain a lot, back, hip, thigh and right abdominal and the fact that it came on suddenly and severely with no signs of CD flare preceding it. I am strongly leaning toward her having a kidney stone. I know with her ileum involvement and SBS she will be very prone to stone formation. It is early Monday morning here and I haven't heard anything from her since last night so I am assuming she has had a good night. Fingers crossed!
Sending loads of squishy (((HUGS))) to you and Jess and I hope things settle soon hun.  
Hey Andi,
I too hope that Alex doesn't have IBD, I don't want to have to see you hanging around in this forum but it is lovely to see you none the less!
Dusty.
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03-13-2011, 09:24 PM
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#13
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Moderator
Join Date: Nov 2010
My Support Groups:
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I'm IN. Count me in!!!
You know Tracey, Dex once said something to me....................
"The worst thing that happened in my life didn't happen to me".
Not sure how to make that look like a quote, Dusty, but I don't know that Dex has ever uttered wiser words. :-) :-)
My day today? Telling Claire she had to make her "coconuts" in the hat from the doctor so I could take a sample to the lab. Some of you may call that stool, BM, doo-doo, poop, etc. but at our house, periodically Claire changes the words for things that bother her. So, sports fans, today it is "coconuts". We took the coconuts to the lab, had her blood drawn, listened to her tell the phlebotomist to "do it right the first time because I don't want you to dig around". I LOVE that she is so mature but HATE that she is so mature at 7. It broke my heart today for some reason.
The 11 year old's newfound wheezing was terrible this weekend. We spent a lot of time outdoors because the weather was so nice. He got panicked and was looking for the inhaler. Then he went in and sat while his friends were outside tearing around. I could have just cried.
Now is any of this life threatening? Heck no. Am I blessed? Heck yes. But do I worry? Well.....you know the answer to that.....every day!
I love all of you all and am thankful that you are here. Thanks for listening.
J.
__________________
Julie
Mom to Claire - 11 going on 17
Dx JRA age 3, Crohn's age 6
Acute transverse myelitis at age 5
Started IVIG September 2016
Started Tacrolimus October 2016
Neurontin 100mg twice daily
Folic Acid
Calcium/D supplement
Daily Vitamin
Daily Probiotic
No more Enbrel, Stelara, Methotrexate, Allopurinal or 6MP
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03-14-2011, 06:27 AM
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#14
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Senior Member
Join Date: Oct 2010
Location: Ohio
My Support Groups:
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Another club member. We're in a good spot right now but I have to do the renewal for Humira through insurance company. Dreading the process
Thanks for the new thread. We refer to crohn's as the little brother.
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03-14-2011, 01:51 PM
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#15
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Super Moderator
Join Date: May 2010
Location: New South Wales, Australia
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Hi Julie,
Godammit J, Claire is such a little trooper! Even through all the crap she must make your heart sing,  .
I think watching what your kids can't do, the simple things like running in the yard, is one of the most heartbreaking things a parent experiences. I hope your boy's meds kick in real soon and he can soon be out there tearing around with this mates.
Hey Zoodles!
Welcome to the club,
So great to hear that all is going well, YAY!!! Hoping all goes smoothly with the renewal, I will be keeping my fingers and toes crossed...........
 hun!
Dusty.
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03-14-2011, 10:11 PM
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#16
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Super Moderator
Join Date: May 2010
Location: New South Wales, Australia
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Well Roo woke up with pain yesterday, about a 5/6, and it didn't abate all day, so she took herself off to emergency yesterday evening. This is the first time she has been unwell like this since moving to Sydney and being 600kms away was really doing my head in. Talk about being torn, wanting to jump on a plane and be there with her but then I have Matt at home, doing okay but far from out of the woods and needing flushes and dressings done twice a day, @#%*!!!
Of course Roo handled everything just fine and she was kept in the ER until early this morning. Her inflammatory markers are normal, she has no kidney stones (ultrasound), no palpable abdominal masses, no urinary infection and still no other Crohns symptoms. Strangely enough I am clinging to the fact that her bloods are grossly normal, those of you that know Roo's story will see the irony in that!
They don't know why she developed the pain but she responded well to Endone in the ER so they released her with a script for the same and orders to return in 48hrs if the pain doesn't settle. She has just emailed me and said she took a tablet at 11am and now she feels drunk, hmmmm, I think 1/2 a tablet might be enough for a slip of a thing like Roo!
Hoping, hoping, hoping that the whole episode settles and becomes a bad but faded memory!
Dusty.
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03-14-2011, 11:16 PM
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#17
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Moderator
Join Date: Nov 2010
My Support Groups:
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Me too, Dusty, me too..........
If not, fly over the pond, come see me and we'll just do this  until we can't remember our own names. LOL
J.
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03-15-2011, 06:06 AM
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#18
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Super Moderator
Join Date: May 2010
Location: New South Wales, Australia
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Ahahahaha, sounds like a plan to me!
Dusty.
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03-16-2011, 03:05 PM
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#19
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Moderator
Join Date: Mar 2011
Location: Florida
My Support Groups:
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Dusty,
Just curious ...it's been 48 hours...how is Roo doing with her pain >?
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03-16-2011, 03:40 PM
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#20
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Super Moderator
Join Date: May 2010
Location: New South Wales, Australia
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Hey T!
When I spoke with her yesterday morning she said it was a 3 and she was feeling better. I haven't had the chance to speak with her today, I don't want to ring and chance waking her up, but either she will be coming home today to do some election stuff or heading back to the hospital! I so hope it's the former. Keeping my fingers and toes crossed!
Lots a love, 
Dusty
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03-16-2011, 05:08 PM
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#21
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Senior Member
Join Date: Dec 2010
Location: windsor, Ontario
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Mine are crossed too Dusty!
__________________
Rachel
(mom of Lucas 18 CD 12/10)
Imuran 125mg
Pentasa 3000mg
materna
iron
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03-16-2011, 05:24 PM
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#22
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Moderator
Join Date: Mar 2011
Location: Florida
My Support Groups:
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I"ll cross my eyes too for extra luck !!
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03-16-2011, 05:37 PM
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#23
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Super Moderator
Join Date: May 2010
Location: New South Wales, Australia
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Thanks Rachel! Must have worked 'cause she has just emailed me and said she is a little sore but will be heading home about lunchtime! YAY!  
Now all that's left for me to do is worry until I know she is home safe and sound!  And then let the spoiling begin!
Dusty.
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03-16-2011, 05:39 PM
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#24
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Super Moderator
Join Date: May 2010
Location: New South Wales, Australia
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 T! I'm too slow again! Thanks hun.
Dusty.
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03-17-2011, 11:16 AM
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#25
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Member
Join Date: Feb 2011
Location: Jonesboro, Georgia
My Support Groups:
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Dusty, Hope Roo is feeling better today.
Julie, The thought of "coconuts" made me smile. Sounds like something my 6 yr old would come up with. One day she told me hers were pickles lol.
Things are going pretty well for us here. K goes for her bloodwork tomorrow. Hopefully what she is on has been working otherwise she is going to be put on a new med. Polllen season is starting here so chances are the next couple weeks we will all be sneezing and my youngest will go around with her asthma/allergy cough.
__________________
Jenny
Mom to Kailynn
Diagnosed CD 2/11
Azulfidine 2000mg
Folic Acid
Iron
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03-17-2011, 11:45 AM
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#26
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Senior Member
Join Date: Feb 2011
Location: Pennsylvania
My Support Groups:
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 Group Hugs to ALL the Wonderful Parents!!!! Seeing our Kids go through so much just to be a Kid.... then add to that this Hideous disease! WE WILL WORRY!!! It lurks in my mind all the time.....every little ache & pain he brings to me!
Dusty thanks for starting this Topic! I so hope Roo is feeling better & nothing much comes of all this.
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03-17-2011, 04:22 PM
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#27
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Super Moderator
Join Date: May 2010
Location: New South Wales, Australia
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@ Jen. Keeping my fingers and toes crossed that K's blood work is normal! Keep us posted! Hayfever season......blah. :hug;
@ Mom. Hope all is well in your camp! Worry, worry, worry, worry.....................it's sure what I do best!
It's so good to see Roo in person! I don't think there is anything better than being able to eyeball your kids so you have a better idea of what is going on. She had a bit of a sore back yesterday from the long drive but has woken up this morning in no pain! YAY!
I asked her last night if she was going to take an Endone before bed and she said she didn't bring them with her. When I asked her why she said "I'd feel a bit strange carrying that sort of stuff around!"
Dusty.
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03-17-2011, 05:39 PM
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#28
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Senior Member
Join Date: Dec 2010
Location: windsor, Ontario
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YIPPEE!! Commence spoiling!
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03-18-2011, 05:47 AM
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#29
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Super Moderator
Join Date: May 2010
Location: New South Wales, Australia
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Haha, thanks Rachel! The spoiling has indeed begun!
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03-18-2011, 06:58 AM
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#30
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Senior Member
Join Date: Feb 2011
Location: Pennsylvania
My Support Groups:
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Dusty....It's funny you should mention "CAMP" that's exactly what I am worrying about! In our public school district in the US where I live. The 6th graders go to camp for 4 nights & 5 days. It's educational with lots of fun! Daniel is doing a lot better but is finding that he can only eat certain things like a bland meat, rice, potato diet. But no milk or cheese. A tiny bit of lactose free milk added for cooking is ok but that's about it. It is helping keeping his frequent flyer miles down to 2-5 times a day. About every other week he is catching what ever is going around resulting in missing more school because of high fever for a day here & there. I think he has missed over 30 days this year. Well the tricky part to camp is that they hold it at a Jewish camp (only one big enough to hold all the kids at once & very very nice)! They will work with the kids diets too but one day is milk meals & one day is meat meals! Not sure what to have them feed my child? We are still feeling our way through all this diet stuff!
We are off to the GI Dr. today (more school missed, a day & 1/2 this week missed)!
My 21 year old son is off at College, he had emergency surgery & DX with IBS 2 years ago. I totally understand that whole seeing your kid in person....I always get the "MOM I am fine....everythings OK....BLAH BLAH BLAH...."! But when I see him I know he is not taking care of himself like he should.....Sighhhhh but he is an adult!

Waving to ALL & Hoping what ever is going on in your neck of the woods is gently passing bye!
Julie, MOM, Rachel, Jen, Mark, Joan, AndiGirl, & Angel
Last edited by MomofIBD's; 03-18-2011 at 07:01 AM.
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