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Crohn's Disease Forum » Parents of Kids with IBD » How are the parents of kids with IBD coping?


 
02-19-2013, 10:40 PM   #61
Clash
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Coping skills aren't at their top level right now. I have no idea what is going on with C and I have this test tomorrow that has my anxiety levels up!

I can cope with fighting this disease even if it seems we are losing rounds but the "waiting for test results" just about pushes me over the edge, its when I feel the most vulnerable! When I know the results it is like having the ground to stand on and fight.

So ready to get the next few days behind C and me.
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Clash
Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
02-19-2013, 10:43 PM   #62
my little penguin
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Hugs
I don't do well with unknown either - too hard to research
Hopefully they will come up with a plan quickly for C
So you can breathe a least a little
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DS - -Crohn's -Stelara -mtx-IVIG
02-19-2013, 10:55 PM   #63
Jmrogers4
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yes, that is my problem as well - need to take action and can't take action if I don't know. Hope you get answers soon Clash and hope your tests give you the results you are looking for as well
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Jacqui

Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
02-19-2013, 11:07 PM   #64
Clash
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Thanks guys, luckily I will get my results tomorrow and hopefully it will be quick with C. But I just wanted to say that draw strength from the relationships we have all formed here. I'm normally not one to suggest or ask or demand things but all of you advocate for your children with such compassion and determination. So I always draw strength from each of you!!! Thanks for all of it guys!
02-20-2013, 10:50 AM   #65
Tesscorm
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Waiting and not knowing really are the worst!!! Clash, I hope you get solid answers today! Lots of luck and hugs!!!

And, yes, totally agree that we all give each other strength! I'm not usually pushy (then again, until Stephen was diagnosed, perhaps I never needed to be??) and, when I do feel 'weaker' in advocating for Stephen, you're absolutely right that it's all of you and your determination that sets the bar for me.

If I know you all are pushing, suggesting, advocating then I don't feel like I'm 'wrong' for doing so for Stephen. Also, the knowledge we've shared gives me more confidence in speaking with the GI... I'm not easily sloughed off (nor are my questions) because I now know enough to either understand the answer or know what questions I need to ask to further clarify. And, I'm okay pushing for my understanding because I know all of you do the same!
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Tess, mom to S, 22
Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
02-20-2013, 10:53 AM   #66
kimmidwife
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Yes clash thinking of you guys today!
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Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
Fail Remicade Jan 09
Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.
02-20-2013, 03:29 PM   #67
CarolinAlaska
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Clash, praying for you and your son today. I hope all is going well.
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Carol
J's story: http://apathnotchosen.blogspot.com
*J, 18, Crohn's diagnosis 1-2013 (age13), taking pred only. NG feedings nightly.
Osteoporosis/osteopenia, Scoliosis, EDS, Asthma, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety, postural tachycardia/POTS and multiple food allergies.
02-20-2013, 03:47 PM   #68
Brian'sMom
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Brians Mom: I would love to meet all of you someday I am like you, I like to talk about the loved ones we have lost. I talk to way to many people I meet about Baylee's Crohns. I am getting better. I do not tell everyone I meet anymore I am sorry you lost your little baby
Julie, I'm also trying not to talk about crohn's as much to people outside this forum, another reason we need each other here.

And thanks for your comment about our baby. It was 19 years ago...so its easier of course. I only mentioned it for the reason that some people don't bring up what they think is 'negative topics' all for good reasons. Not cause they don't care.

I also am amazed how similar all of us are in our feelings and how we deal with this crohn's disease. Again feel so fortunate we have this forum.
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Kathy, Mom of 14 yr old Brian
symptoms 2005, official dx 6/2010

Praying for Remission
Vedolizumab 8-8-14
Ileostomy 3/22/14
Multivitamin,Iron,Vit D

Total EEN 12-10-13 to:TPN 1-29-14 - 4-2-14
Tried:Azathioprine,Pred,Pentasa,Cimzia Bi weekly & MTX 9/2013 to 8/2014, Humira 1/2011-9/2013, w/oral mtx 5 mos in 2013. Remicade: Had allergic reaction Jan 2011 Built up antibodies by 3rd infusion.
Has done round of Flagyl due to abcess 12/10 and 10-21-13 which helped both heal quickly.
02-20-2013, 04:57 PM   #69
Mehita
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You guys are all awesome

Hope you're doing ok, Clash. Been thinking of you all day.
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Mom of DS, age 17, dx Crohn's and Celiac Oct 2008
- Remicade, started Nov 2013, added Solumedrol June 2015
- added Methotrexate/Folate March 2016
- Multivitamins, Probiotics, Vit D
- Small bowel resection, Jan 2013
02-20-2013, 05:58 PM   #70
kiik
 
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Thanks everyone for your support, you are all too kind! I know my parents love me and they are really great, so don't think I'm totally on my own! I think you are all right that it's probably more of a coping mechanism than anything else. They are away right now but when they are back I think I will probably try and talk to them
02-20-2013, 07:00 PM   #71
Niks
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Slightly anxious too.. Been talking to IBD nurse over last week, she has been talking to GI, and has assured me that he now does believe that there is more going on than Coeliacs!!

So will let us know his plans for her tomorrow.. J not really holding anything down, pain seems worse too.. getting pretty scary..

Fingers crossed he will finally schedule an MRE!!

x
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Daughter 22, 1. Upper GI and colonic dysmotility with viscernal hypersensitivity.
2. Predominant Constipation with slow colonic transit and moderate gastroparesis,
3. Nephrolithiasis
4. Osteopenia bordering on osteoporosis



Peristeen Irrigation every other day.
Citramag/Picolax

Waiting for bowel stimulator!
02-20-2013, 08:57 PM   #72
Jmrogers4
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Hope they keep moving forward and you get answers soon
02-20-2013, 09:27 PM   #73
Catherine
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Wishing you all the best for tomorrow.
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Catherine
Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
02-20-2013, 10:09 PM   #74
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I had to start from the beginning and read all these posts...so powerful and touching. I feel like I cope ok sometimes, but at this particular time, I'm just wiped out. I'm a single mom, too. My son has been sick almost without a break for 2 years plus now. We are in a frustrating place where Dylan's been in a flare that resulted in adding some prednisone which is tough for him, lots of side effects, and then methotrexate. He spent the next month vomiting every day and with a fever. Doc and ped GI agreed he had a virus but with remicade, mtx and pred apparently his horrifically immunosuppressed body just couldn't fight it off. He weaned all the way off the pred and had about 2 days of feeling decent before experiencing Crohn's symptoms again. Don't know what to do right now.

In the meantime, my own Crohns is beginning to flare but the worst has been a really nasty bout with arthritis that has been going for about 6 months. I run to cope but lately running is rough - with hip, knee and ankle pain; work is tough with terrible hand pain. Fatigue is through the roof with being up with Dylan and trying to deal with side effects of having started mtx injections myself 10 weeks ago. I have no vacation or sick leave left and already took 8 weeks family leave when Dylan was doing worse less than a year ago.

I'm just really struggling...feeling overwhelmed and tired and unable to do anything well. At work I'm thinking I should be home. At home, I'm fearful of losing my job and insurance. I don't even have the energy to cry.

I am so grateful to have a wonderful relationship with Dylan and also my daughter who is at college for her freshman year. I have friends who drag me to the gym for yoga and other good things. I'm grateful to have found this site and look forward to getting to know everyone. Thanks for listening!
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Jodie
dx Crohns 1995
Remicade since 2002
monthly B12inj
dx RA 2012
MTX inj. 12/2012
Vit D 2000mg/day
folic acid 2mg/day
Mom to Dylan (14)
dx Crohns 2010
Tried prednisone, prevacid, endocort, immuran
EN Nov 2011 - April 2012
Remicade 3/12-4/13, MTx jan-april 2013
Humira - starting May 2013
Folic acid 2mg/day
4000mg Vit D
1000mg calcium
02-21-2013, 03:10 PM   #75
CarolinAlaska
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Jodie, I'm so sorry your life is so rough right now. I can't imagine dealing with such a sick son when you are so sick too, and doing it on your own. I'll be praying for some healing all around in your home and family. I'm so glad you have a good support system around you!
02-23-2013, 11:57 PM   #76
Marni's mom
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I'm back! If you look at how many posts I have compared to the rest of you, I'm a "new kid on the block", but I already feel like this has become a community of friends, and I missed you! When I started this discussion/thread, I feared I might come off as sounding selfish for wanting to have a place to cope and vent instead of discussing my daughter's Crohn's symptoms and treatment, but clearly this has been a blessing and an eye opener. A blessing because of all the friends I feel like I've found here, and an eye opener to learn that I and we are not alone in our experiences. So many of you have commented that you could have written a certain post because of the vast similarities. I couldn't agree more.

Marni had not been doing well for the past few weeks. When I say that, I mean she's been worse, because she's never really been "well" since her diagnosis five years ago. So, we put her back in the hospital Friday a week ago for another MRI. I was hesitant to go along with it because none of the other internal tests have every shown anything, including the MRI done last summer. Then, on Sunday, when we were being discharged, the doctor in service from our peds GI group told me that the MRI was negative. I was pissed off because I told our doctor when he suggested it, that I didn't understand why we were doing this again when no scope, MRI, upper GI, pill cam, etc has ever shown anything significant before and I had no reason to expect it to be any different this time. Getting in IV started in Marni these days is almost impossible, and sometimes she has to be sedated just to get it going because they hurt her so much digging around for a vein. So, I put her through all that torture for nothing. BUT.....

Then, on Wednesday, when we went for her every-other-week visit with her GI, he told me the MRI was NOT negative, but rather showed inflammation in the descending and sigmoid colon. He talked about how the pain she's been having and the phantom poops were because that part of the colon was working hard to get what it "thought" was poop out, when it was really inflammation. Then he told me about the new drug he was starting.....the steroid foam. I have no idea how I managed to go through this forum without learning about the foam.

All I could do was laugh when he told me. I went from crying from the frustration of her constant pain with no relief to laughing when he told me how to administer the foam. I didn't laugh because rectum discussions are funny. I laughed because I had a very vivid image in my mind of how that was going to go at our house. I asked him if the foam came with a crowbar because i know first hand how tightly my little 10 year old pricess can clench when she is in protection mode, if you know what I mean.

He got this "Well YOU ARE the parent" vibe going, and I just said.....I know her, and I know that ain't gonna happen. LOL Then I asked him if we could get a home health nurse to come to our house to administer it the first couple of times and if not, could he give me a Rx for a sedative for ME for when I had to do this. LOL

I obsessed about it for two days, but finally sucked it up and decided to "git her done" last night. She fought a bit, but once I got the message to her that this was going to happen no matter what, and even if it wasn't last night, it would be the next day, she relented and let me.

Now comes the "am I crazy" part.......Am I crazy, or is it possible that this stuff is so good it actually started helping after ONE half-assed (no pun intended) application? I wasn't really even sure I had done it right, although she assured me, it felt right! LOL

Wow, I sure have rambled on, haven't I? i'm sorry.

So, my point was that I missed you guys. I read all the posts that were written while I was away from the forum and I wanted to answer each one separately....you all have had such wonderful things to say to each other. I loved the idea of someday having a real meeting....fun stuff. But, before then, if any of you head down to Texas, Houston, specifically, I hope you'll let me know before then.

To kiik specifically, there are many of us who are old enough to be your parents, so consider us your "foster" Crohn's parents and lean on us. Maybe you could show your parents this thread and ask them to read all the comments so they can see they are not alone in watching their child suffer as they have.

Well, gotta go....Marni just came out of the bedroom saying she's hurting and wants to lay on the couch next to me for a while. night night all.

Stacey

Last edited by Marni's mom; 02-24-2013 at 12:18 AM.
02-24-2013, 12:31 AM   #77
Marni's mom
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Oh, and a nutter thing....if I sound "upbeat" tonight, I'm making up for being a teary puddle of nerves the past week. The school principal didn't know what to do with me yesterday when I stopped in to talk to him about Marni's grades and how much school she's missed. She's missed 50 days so far this academic year. I cried the whole time and kept apologizing and assuring him it wasn't anything he said or was doing, but rather pure exhaustion from lack of sleep and dealing with Marni's pain and spending her days in the bathroom. From some of the posts I've read about some of you losing friends over this, I'm so lucky that no one ran away from me screaming after the past week of dealing with "mentally unstable Stacey". LOL.
02-24-2013, 02:21 AM   #78
Ann27
 
Join Date: Feb 2013
Sooo happy I found this group! 12 yo daughter diagnosed with crohn's about 1 month ago. I feel as though my world has been turned upside-down. My kids were healthy..especially my daughter. And the medicines!!! I rarely even take an advil myself, now I'm giving my daughter 6 different meds! I think I am ever-so-slowly coming to terms with everything. I HAVE to accept what has been dealt...I tried to ignore the signs that something could be wrong for about a year. Now I just have to accept it all, but it is SOOOO hard! My daughter doesn't want anyone to know about her condition, so even my closest (?) friends haven't asked too much. In a way, I wish they would. I know they've noticed her puffy face, weight gain, but I feel they are waiting for me to bring it up to them. I just can't. But if they did ask, I would totally break down like I did to the pharmacy worker

Like I said, I'm barely starting to come to terms with this all. I have to be strong for her, but it's soooo hard! Life has to go on....
02-24-2013, 09:49 AM   #79
my little penguin
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Welcome Ann!!!
Glad you found us...
02-24-2013, 10:15 AM   #80
Clash
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Marni's Mom, I hope that the new med is working fast and she if feeling alot better soon!!

Ann27, so glad you found us, it is a lot to come to terms with. Dusty posted a great read that really helped me in the beginning and I still go back to it from time to time, click here to read it. I hope your daughter is feeling her best soon!
02-24-2013, 12:02 PM   #81
Jmrogers4
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Marni's Mom, I was right there with you sobbing in the school counselors office when I went in to tweak his 504 based on all the school he has missed this semester and found out he hadn't been drinking his EN at school. I lost it, here we are trying to do everything to make him feel better and he wasn't following along and had been lying to me for 2 weeks. I apologized all week for losing it.
02-24-2013, 12:36 PM   #82
CarolinAlaska
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I'm sick today and I'm pretty sure it is 90% stress over the fact that the EEN isn't working so far like I was hoping. I was stressing to the point of voimiting my guts out last night, and today I have diarrhea. It doesn't feel like the flu. My right side is hurting again too.
02-24-2013, 06:24 PM   #83
Marni's mom
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Hi Ann, Welcome to "the club". I have found this thread to be very valuable in connecting with other parents on a level that doesn't discuss specific therapies or symptoms for their kids, but rather a place where we can support each other emotionally. There a lot of threads in this forum that are about the medical aspects of CD, but I wanted to start one where we could blow off steam and "confess" when we're feeling weak and tired.

Jmrogers, I totally know how you felt when you found out your son wasn't taking his EN. Our kids don't get to control many things relating to their illness, so when the find something they can try to control, the do it, even when it's to their detriment. There are times when I want to strangle Marni for refusing to do her part. I try to explain to her that when she's feeling bad, it doesn't just affect her. It affects everyone else in the family from not being able to go somewhere her sister wants to go, to me not sleeping for nights on end and being very stressed out while trying to hold together the household and my dental practice (neither of which I feel like I'm doing a good job of, by the way). They can be very selfish and not realize that impact on everyone else when they refuse to take their EN, meds, or whatever else they're supposed to be doing.

I'm posting a series of 8 links below. I thought some of you might be interested in seeing how our local ABC affilate brought awareness about IBD thought two half-hour programs done in 2011 and 2012 leading up to our local CCFA fundraising gala.
By chance, the producer of the shows met Marni at Camp Oasis summer of 2011 and fell in love with her. So, they featured her in the program and then followed up the next year.

Keep in mind that there was editing done which included cutting and pasting together parts of interviews to stress some facts that, to those of us who know, won't sound completely accurate.

I might post these links to a separate thread of its own, too.
Each program is only 30 minutes long, so really each segment is only about 5 minutes. I hope these links work from here. If not, I'll figure it out.

Stacey

"You Are Not Alone"
Segment 1 http://abclocal.go.com/ktrk/video?id=8439986
Segment 2 http://abclocal.go.com/ktrk/video?id=8439989
Segment 3 http://abclocal.go.com/ktrk/video?id=8439990
Segment 4 http://abclocal.go.com/ktrk/video?id=8439991

"Breaking The Silence"
Segment 1 http://abclocal.go.com/ktrk/video?id=8882705
Segment 2 http://abclocal.go.com/ktrk/video?id=8882706
Segment 3 http://abclocal.go.com/ktrk/video?id=8882704
Segment 4 http://abclocal.go.com/ktrk/video?id=8882707
02-24-2013, 06:39 PM   #84
Kimberly27
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@ Marni's family. There is so much love... Sweet.

Kimberly

Last edited by Kimberly27; 02-24-2013 at 11:39 PM.
02-24-2013, 09:00 PM   #85
Hope345
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Marnis mom,

thank you so much for sharing the links to the videos. Marni is adorable and so is your whole family. My heart ached for you as I watched all that Marni has gone through. she is a remarkable young girl.

I think all of us moms/dads can relate to those videos. I sent copies to some family members ...

yes, make sure you have tissue...

Last edited by Hope345; 02-24-2013 at 09:49 PM.
02-24-2013, 09:04 PM   #86
CarolinAlaska
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Those videos are awesome. Thanks for posting them. Of course I cried through out them all. My dd watched over my shoulder, but hasn't commented yet.
02-24-2013, 09:39 PM   #87
Jmrogers4
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Thank you for sharing! Marni is adorable and very well spoken. Love the "Mom, here is my fish" and she wouldn't touch it.
02-24-2013, 11:06 PM   #88
Devynnsmom
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Marni's mom thank you for sharing.
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Samantha, AKA Devynn's mom


Devynn (12 years old) was *unoficially* diagnosed with Crohn's disease in Dec 2009.
That diagnosis was changed to Ulcerative Colitis in Mar 2012.
Pentasa ASA Dec 2009-Mar 2012 (dosage tweaked a couple of times)
Mezavant Mar 2012- Nov 2012
Sulfasalazine-Nov 2012
02-25-2013, 02:01 AM   #89
Marni's mom
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Just got out of my bedroom where I've been laying with Marni for two hours trying to help her push through her pain and go to sleep. She seemed to have a better weekend, but then tonight the pain was bad again. While we laid in bed together, I checked my email from my cell phone and saw the alerts that there were comments on the thread after I'd posted the links to the videos. I read them to Marni there in the dark...all those nice things people who don't know her had to say about her. She liked it.

I have to tell you that yes, I do think my child is remarkable and brave and all the things that were said, but so are ALL of YOUR children, too. They ALL endure similar experiences in the overall picture. They all face unimaginable pain, unending diarrhea, bleeding, lack of growth, icky formula as their main source of nutrition, etc, in different combinations and degrees. They are ALL brave and remarkable. The only thing that makes Marni a little different is that she was lucky enough to have been given a chance to be a spokeschild for Crohn's and help get the word out so d*&#[email protected] people will stop saying things like, "If your son cuts out spicy food, he'll be okay."

I wanted to give hugs and support to those of you who have written that you are single parents trying to work and take care of not only your sick child, but others, too. YOU are remarkable.

I know how hard it must be because my husband, Jeff, works in Dallas. He started that job only three days after Marni went into the hospital for the colonoscopy that ended up with the perforation that required surgery to repair that triggered all the post-op complications that kept her in the hospital for three weeks. He didn't want to go, and his new employer was nice enough to tell him he could postpone starting the job, but I made him go because we needed the income since I was going to have to take time off from my practice to be with her in the hospital.

That was two and a half years ago and he still works in Dallas. He comes home on Friday night and drives back up on Sunday night every week. It's a four hour drive each way. He's gone all week, every week. I'm lucky enough to have my mother living only two miles from my house, and she helps me immensley. She's like a third parent to both of my kids. So, when I'm feeling stressed out and like I'm doing this alone, I feel ashamed for feeling that way. My husband comes home every weekend and during the week I have my mom helping.....and I know how hard it is like that. But to think that some of you have NO help makes feel awful for complaining. And then to be taking care of a child with Crohn's AND have it yourself....that's mindblowing. I admire you all for your strength and tenacity.
02-25-2013, 09:56 AM   #90
QueenGothel
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I just watched all the videos. You must be so proud of her. I think it is great that she talks about it. Rowan doesn't talk about it. I wish they let younger kids go to Oasis. I recently did a interview with Michigan Alumni magazine whilst we were at the hospital. It is so important to raise awareness! Great job!
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