Posted 9/12/2009 1:10 PM (GMT -7)
We see Dr Tron in the same group in Danville and like him.We were suppose to see Dr. Maksimak
when my dd first got sick but was pushed up and Dr Tron had an opening. Its funny because he has avoided steroids this entire time and started with Remicade(which was wonderful though scary).He doesnt like long term steroids for children.Its just funny to see how some drs in the same group treat so differently.Our dr.believes in a top down approach in meds.Dont know whether it was the right thing or not but we're "down" to the 6mercaptopurine.So far so good.Shes been on Pred 3 days now and 6mp for 3 week.I am hopeful.
How did your daughter do on Pred with side effects?Was she hyper,moonface,hungry all the time, any weird side effects?
Havent tried the diet.She would not be very willing to comply.Im hoping as she gets older and understands really whats going on she will be more willing to try.
Thats so funny we go to the same group.I mightve seen you in the waiting room.LOL
Small world on the internet.
Posted 9/12/2009 6:59 PM (GMT -7)
Yes Fran, "It's a Small World Afterall". LOL
As for the prednisone, the biggest side effect was the massive appetite increase. She wanted to eat 24/7. (Initially, this was wonderful because she had gone from about 70 lbs. down to 54 in a few months when we finally realized it was Crohn's.) Eventually, I had to restrict her a little by saying "you've eaten enough" and her eyes would tear up.  She climbed to 75 lbs. while on it.  She got a bit of the moon face, but really nothing that looked like more than weight gain to most one, not friends or anyone, said much about it and this was a relief to both of us. She had gotten so thin in the face prior that it was almost a relief to see her puff up some.  Oh, another side effect I forgot about... She had trouble sleeping, getting to sleep and staying asleep was a challenge.  That said, it made for great school mornings as she was up and bouncing around ready for the day bright and early and cheerful.  None of these side effects presented what I would call "major" issues and paled in comparison to how much better she felt and looked.
Funny that our docs are from the same facility and have such different approaches. I think ours is starting with the most mild approach, in hopes that she'll respond positively without having to jump right into something like Remicade. That's fine by us.
As for the SCD, my husband and I have the same thoughts as you.  As she gets older and more mature, perhaps she'll be more willing to work at managing her disease through diet. In the meantime, we just do our best to keep her healthy and I worry endlessly. cry
By the way, have you ever heard of probiotic enemas?  A friend is doing this for her daughter (10 yr.) with severe colitis and she claims it is working.  A "more direct"route than oral probiotics I guess.  I am considering it.
Posts refer to my 9 year old girl
  • Started with 30 mg Prednisone, tapered off over 3 months

Then continued with:

  • Pentasa, 3 blue horse-sized capsules, 3 x daily
  • Forvia multivitamin/mineral for Crohnies
  • Coromega
  • Calcium
  • VSL#3, 2 x day
  • Custom Probiotics: 6-Strain Blend, 1 x day
  • Culturelle, 1 x day

Posted 9/12/2009 8:09 PM (GMT -7)
FitzyK23 said...
I was going to suggest you don't home school her if the only reason is because you are afraid of her catching swine flu. I think patients feel like a social outcast enough with this disease and have a tendancy to isolate. I think the only reason I have been successful professionaly is because my crohns was misdiagnosed all through high school and college so I was forced to just "suck it up and deal" no matter how sick I was. While I wouldn't wish that on anyone it taught me coping skills and ways to get through a school day sick. I now use those skills to get through a work day sick rather than worrying "what if my coworkers hear/smell my diarrhea?" If the risk gets to close to home (someone in her class w/ the flu or something like that) then consider keeping her home or asking her doctor about Tamiflu. I thought swine flu was most dangerous for those w/ healthy immune systems anyway. Long story short I think the social aspect of school is very important, especially with a chronic illness. If she was miserable in school and not doing well then it might be a good alternative but as long as she is happy and coping I would encourage that!

Usually I feel this way about things, but having personally seen how fast this flu turns in to a bad pneumonia in a kid that DOESN'T have added risk. I wouldn't blame anyone for wanting to take that extra precaution with a child that does. While it can hit the healthy hard, most of those who have passed away from it were the ones that had an underlying health condition. Especially with children.
We started homeschooling for other reasons obviously, but to me it's an added bonus. The social aspect of public school was pretty awful here, add that with the swine flu and it makes me REALLY glad he's not there. LOL You can almost always provide kids with a lot of really quality socialization outside of school anyway. So I wouldn't let that stop someone. Frankly had I been diagnosed as a kid, with the way teachers NEVER let you use the restroom, I would have wanted to be homeschooled for that alone!
But I really do believe this is going to be a bad year, even my doctor said he's concerned about it. When we took my son in for a follow up, he said he saw 3 cases of kids that day with it. With 2 more cases the day before. Already! He said we did great getting him in so fast for treatment, and even so it got as bad as it did. I don't want people to panic, but I think too many people are blowing this flu off as nothing. Until they see it for themself.

Diagnosed with Crohn's Disease 2/06, and Health Anxiety/OCD 12/08 Taking Asacol, Questran, Toprol XL, and Celexa.

Post Edited (Jen77) : 9/12/2009 9:19:45 PM (GMT-6)

Posted 9/12/2009 8:31 PM (GMT -7)
Hi~ I'm a huge Disney fan, too! We go to WDW at least once a year and I post regularly on a major Disney planning board. Can't get enough! It truly IS a happy place and something I can look forward to, esp when my health is so crappy.

Regarding your daughter and swine ~ honestly, I'd do virtual school or whatever you can for awhile until 1)this blows over or 2)you decide it's best if she just move to homeschooling. Missing major chunks of time due to illness, having to deal with social stigma at that tween age that is already difficult, and opening herself up to something like swine flu seems like all great reasons to yank her for awhile. Of course, I'd ask her opinion as well.

I am not a worry wart with illness, and am pretty pro germs as I think it builds our immune systems (I don't even get flu vaccines typically!) but even I'm a little worried about this swine flu. It's just much more rampant than the seasonal flu. And it hits children especially hard.

I can't imagine it would hurt anything to pull her for awhile, and she can get her social outlets through other means.

I chaperoned a camp for kids with Crohns last summer and had girls her age in my cabin ~ they face challenges that as an adult I don't face. It's tough. I hope her doctors can get her disease under control soon.
Posted 9/13/2009 4:36 PM (GMT -7)
Jen - you are very right about people not "getting" the severity until they are exposed to it. Additionally, I am lucky that where I live has not had any cases so I have had the luxury of being less concerned.

Disney - I am SO GLAD you understood what I meant in my post. I would by no means advocate anyone telling anybody w/ crohns to suck it up and deal. Since I was misdiagnosed people believed I was faking or exagerating or a hypochondriac or had a low immune system. I often just went to school sick for that reason. I also had an ovarian cyst so my symptoms were blamed on that instead of crohns. If I threw up at school I was allowed to hang in the nurses office for awhile and then sent back to class because it was just "morning sickness" from the cyst. I'm just saying that in retrospect I learned a lot that way and really found ways to push through when I felt my worst. A child shouldn't have to do that but often as adults we do. Otherwise we lose our jobs and our income and insurance, etc. So, while I wish my crohns was caught sooner and I had more help and resources I learned to advocate for myself and to get through even if I felt awful. I just think if I was allowed to stay home whenever I was sick I would have a really hard time getting through a work day as an adult w/ crohns. Hope that made sense.
27 Year old married female.  Graduated law school this year and waiting for results of the bar exam.  Start a new job sometime in September.  Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night.  I take xanax prn for situational anxiety (aka no easy bathroom access). 

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