Im new here

[vness1208]

hello people heres my story,
so I was searching for info and came upon this site, I just signed up so I hope Im doing this right lol.. Im a mother of 2 lovely girls & my (oldest)13yr old daughter was just diagnosed w/ chrohns in Dec 2010 & it worries me most of the time. I dont personally kno anyone else w/ this disease so family & friends feel bad but really cant relate to me. Im interested to see what other parents & their children go thru w/ chrohns disease..

 

[DustyKat]

:lol: I just posted on the Your Story forum and directed you here but you have beaten me to it!

Dusty. xxx

 

[vness1208]

dont know how that happened because I dont know what Im doing at all lol I just need a little practice I catch on quick..

 

[Deemari]

Hi vness,
I know the feeling. My 10 year old daughter was just diagnosed in May and we have yet to find a medication to help her. The disease itself is worrisome, but not finding a drug to work is frustrating, especially as we try different ones and we read the potential side effects...errrrgh.
How is your daughter doing now? What is she on?

 

[vness1208]

hello deemari,
srry to hear about your daughter I hope they find something to help her, I know it is very frustrating for your family so just try to stay strong and positive.. my daughter is doing ok w/ the chrohns right now but doctors think she has some type of liver disease because her latest blood tests came out abnormal.. she was taken off of prednisone a couple of months ago & now only takes the flagyl & 6mp. she has a mrcp scheduled for next tues and Im praying that everything turns out ok.. what meds are ur daughter on?

 

[Deemari]

She started on Pentasa and Prednisone with no response. They moved her to Methotrexate mid June, and still no relief. She ended up with a rash from it last week, so they are now having me give a large dose of prednisone before her weekly injections. It kept the rash away this last time, but not the tremendous skin itching. It's all very frustrating.
What is an MRCP? I have heard that the 6mp/imran/methotrexate level of drugs can cause liver enzyme abnormalities. Hopefully that is all it is for your daughter instead of a liver disease. How frightening!

 

[vness1208]

aww poor thing, I hope she gets better. luckily my daughter responded good to medication & has been doing well ever since diagnosed in dec. she hasnt experienced a flare up yet so its kind of frightening because I dont know the triggers or what im even looking for.. this is all new to me as well so I know how you feel. & yes the 6mp does cause liver abnormalities but we've already tried lowering the dose for a while & her blood test results have only gotten worse & this is why their saying they think she has psc or auto immune hepatitis. mrcp is a certain type of mri. I havent explained details to my daughter because Im afraid of how she'll react and dont want her to be scared..

 

[Deemari]

Ugh..I hope they are wrong. Crohns is enough to handle, let alone another disease. Poor kid! I hope it goes well for you guys.
My daughter has been through almost every test known to man. haha. She's had CT scans, MRI, MRE, Hida Scan, Xrays, laproscopy surgery, stomach emptying, and the list goes on. It was finally the pill capsule test that caught the issue because her Crohns is in her jejunum only...so no one could ever find the ulcerations via colonoscopy/endoscopy, etc. AT first, her only symptom was a stabbing pain behind the belly button that got worse when she ate solid food. Now she has joint pain, mouth ulcers, a strange crawling feeling on her skin and additional cramping when she walks/jumps/plays. It took 1 1/2 years to get a diagnosis. I have a new lack of respect for the medical community.
So what were your daughter's symptoms that led you to have her tested for this? Was it an accidental finding, or did she go into a flare at some point?

 

[vness1208]

yea tell me about it.. I cant believe her doctors didnt pick up on this sooner either.. I kept telling them it was something deeper than constipation, I had a gut feeling but noone listened.. daisha(my daughter) has had all of those tests as well besides the hida scan, not sure what that is but anyhow.. daisha had symptoms for almost 2yrs before diagnosed. she had pain in her stomach & bum and everytime I brought her to the er or doctors office they would send us home with ibuprofen & hydrocortisone for her bum. but her pain kept getting worse and now she was starting to have pain while using the bathroom. It got to the point where she was having accidents and lost the feeling of knowing when she had to go. then everytime she would go she would scream and couldnt even sit on the toilet.. I kept bringing her to the doctors and they kept telling me shes constipated and its normal and all this crap.. they were giving her enemas, suppositories and mirilax almost everyday. I specifically told this was more than constipation because she just wasnt herself and I saw the pain in her eyes. I couldnt take seeing her in pain anymore and told her primary that I wasnt going to give her enemas anymore and I couldnt watch her in pain anymore and I wasnt leaving without answers & finally we were admitted to er the day after her 12thbday, stayed for 7dayscleaned her out and had colonoscopy, endoscopy, mri's and finally diagnosed. so basically if I didnt take a stand she prob still wouldnt have gotten he right treatment..

 

[DustyKat]

Re: Poll...

Both of my children have seen the school psychologist at some point.

Matt saw her for issues unrelated to Crohns. It was in primary school, so well before CD.

Sarah on the hand did see her regarding issues related to CD. She had a difficult last year of high school and I asked that she be referred to the psychologist. I don't know that it made any difference but it certainly didn't do any harm. I felt at the time her behaviour transcended "normal" teenage behaviour and she was acting out at the differences CD had imposed upon her and the way they affected her every day life.

In many ways I feared her leaving school and moving away to go to university and the biggest fear was would she step up to the plate and take responsibility for her health. Thankfully those fears were unfounded and she assumed a level of responsibility and maturity that surprised and, of course, pleased me!

Dusty. xxx

 

[dannysmom]

re: poll
My son Danny (still undiagnosed) has not. When we first received a probable Crohn's dx we made an appointment at one of the best Crohn's places in NY (Mount Sinai) and were supposed to see social workers, pschologist, etc. but the Dr. questioned the dx and said it would not be appropriate since the support team were for Crohn's patients. (That hurt at the time.) We are conisdering taking him to therapy now since his illness has had such a huge impact on his life (home instruction onl for 2.5 years, time with friends dwindled down to almost none). Whenever we talk about his illness, he does get sad and angry. We know he has a a lot of bad emptions he bottles up. But, he bottles them up really well and is always such a fun pleasant person, even when he feels like crap.

 

[vness1208]

thanks for the input ladies.. I was just curious because daisha's doctor has recommended she see a psychologist and I wasnt sure how I felt about it but I guess it cant hurt right?

 

[DustyKat]

It won't ever hurt V, the worst it can do is be no help at all or your daughter will hate it, at which point you pull back.

Dusty. xxx