Mothers of Children with Crohns Community Group
This group is for Moms who have kids with Crohn's disease. Hopefully we can help support each other.
Hello, I am new to this group. I have a four year old daughter who was diagnosed with Chrons in 9/2011. An hour ago I felt pretty lonely bc I just felt like i had no one to talk to that would understand our situation. It is quite refreshing to find this group and hear other moms stories. My daughter takes pentasa twice daily and cortifoam when she is having a flare up. I am pretty scared bc she is so young and the pentasa seems to only work sometimes. I hate the idea of putting her on stronger medications at such a young age. I have been asking her doctor about changing her diet to see if that could help but he just stayed adamant about feeding her the same as always. This has put a bad taste in my mouth b/c i could be feeding her mcdonalds everyday and he wouldn't know but he tells me to keep it the same. I have a friend who has lupus (also auto-immune) and was having a terrible reaction to all the meds they had her on so she sought out an all natural doctor. This doctor has changed her life, all through changing her diet and some homeopathic remedies. Once she had her 3rd flare up in a short time I decided it was time to give him a call. Low and behold, he tells me that she is potato intolerant and intolerant of egg and whole grain when consumed together or in less than an eight hour time period. I am very grateful that I now know this and I have already completely removed potato and egg. I try to give her as few whole grains as possible and focus mainly proteins and fruits and vegetables. The problem is that there is potato in almost EVERYTHING. It is used so much as fillers and thickeners and there is even potato in antibiotics!! There is also antibiotics in all cows milk (except raw) and most meat (unless you buy organic which I have started). We have been completely free of all of these things since Monday. I may be getting my hopes too high, but I feel like I am already seeing a difference. Her belly isn't as bloated as it has always been and she actually seems happier (and she's a pretty happy kid usually). Also her bleeding has slowed down since to almost not existing. I still have her on pentasa but haven't given her the cortifoam. I have my fingers crossed that this could be a big part to the problem that I have the power to help fix. I felt so helpless. Suggestions for making some veggies and different meats more interesting would be really helpful. Thanks for letting me vent ;)
We rode a roller coaster--up and down-- for years as far as this disease went---a good doctor is a MUST. Remember too that the age your daughter was diagnosed is important---growing is hard to do with constant disease, so a good relationship with a pediatric gastro is crucial.
You can read earlier posts and there is lots of information about what different moms have done and tried...I don't think any have been deleted yet---
In our case we tried everything--and every drug and doctor out there. Naturopaths, rheumatologists, endocrinologists, gastroenterologists etc etc etc Diet restrictions and liquid supplements...hospitalizations....well you get the picture....but Crohn's is not a "one size fits all" disease. Something that may work with your child may not work with mine...so it's up to you to do the research and try.....and try again...keep a notebook, especially important for young crohnies....keep records and pathology reports and jot down any anomalies you notice....so helpful when our kids flare to be able to look back and see what worked, what time of the year it was...whether or not a food contributed to a flare...for instance, for awhile my son had yearly colonoscopies. after noting that he started bleeding after the procedure (enough to be hospitalized) I talked to the doctors and he went on a course of prednisone b4 procedures because his intestinal tract was just so touchy...."friable" I think it's called, anyway, it does work to journal. ...
Good luck with everything, if theres anything I can answer for you just let me know. I am so sorry your daughter is so young....but I will say there is a gift in all this for us moms sometimes...I am especially close to my son, he holds my heart very close to his own....from years of fighting disease together, I think. I will be praying for you all...
Its pretty inspiring to hear how positive you are. You and your boy have been through too many hard times yet you still choose to see what good has come from it. I try to be positive (and any other person would tell you I am pretty positive) but its hard, and sometimes my thoughts get the better of me.
I have come to realize that this is not a "one size fits all" disease. It seems to affect all different people all types of ways... and it is probably going to take a bunch of different try's before we figure out whats best. We have been removing different things from her diet b/c of her new found intolerance, but subsequently she mainly stuck with eating fruit. At first I thought it could be helping but then yesterday she started to bleed again, and by 3am she was just passing clots and blood.
So I have implemented a binder, just like you suggested! I am going to keep a food log, as well as a place to keep any info that I print, records and so on. I have also started a journal, just as a place to keep track of the days and to let my thoughts run rampant.
Thank you so much for sharing advice, information and support. It was very nice to read. All I ever hear is don't worry, you guys will get through this. Its a nice thought but completely unrealistic.
It does break my heart to think of little ones as young as 3 with this darned disease! They just want to play, be loved, feel good, and be happy! Alismom---keep reading all the wonderful and wise posts and advice from all the other moms----you and your daughter will eventually find the"feel good" zone, but not without experimentation and fighting to be your daughter's advocate. Deerev----you and your son have gone through this for years, and your kind words and advice are much appreciated!
Lilleta---sounds like our kids are on a similar diet path. My son (16 now) was diagnosed a year ago with severe Crohns. After starts and stops (and being forever on prednisone), he has been on Remicade since last November. The doc is trying a 12 week break between infusions this time, but It seems to be pushing it for my son---he has an appointment next week anyway. The good news is that he started growing again (1 1/2 inches in 6 months) and he weighs almost 130 pounds---a gain of 35 pounds since diagnoses. He is out skateboarding now with a bunch of guys and acts like a typical teen. He is thriving on lots of lactose free whole milk---His diet is mainly oatmeal, turkey bacon, 3 egg omelets with cheddar cheese, ground lean hamburger on non-seeded buns, meatball subway sandwiches and eggo waffles before bed. Yup----he hates fruits and veggies and fish and anyway, I'm not pushing any. But yes, no spice, sugar or grease ever passes his lips now. There is another multivitamin called One-a Day Teen Advantage that also has iron. I am having my son choose some "new" foods this summer to get more variety. He's a teenager and picky!
Good luck!
My son (16) was diagnosed with short stature in the fourth grade and has taken growth hormone shots ever since----years before crohns showed up. The hormones definitely help, but he did lose at least one year of growth when he had the crohns symptoms. He is almost 5'5" now and weighs 134 pounds. He started growing again after he began the remicade last year, but I think he has slowed down again. I'm only 4 11", so he's not going to be a giant anyway, but his dad is 5 8".
Yes, remicade can work wonders---he just had it 4 days ago. Hang in there