From Mom Rachel:
My daughter, Hannah, was diagnosed with Crohn’s in January of this year at age 9. After 6 months in remission, she had her first flare up in July. Steroids and the SCD diet were started simultaneously. She was slowly weaned off steroids in September, but never fully bounced back to normal. Now, one month later, she is in a full flare-up, running to the bathroom with diarrhea several times a day. I’ve changed her diet to limit food intake to stews, soups, and bone broth. But nothing seems to be helping. Has anyone else experienced this? Has your child had to go back on steroids while following the SCD diet? Does anyone have any additional suggestions?
Today I am reminded of how thankful I am that my son was diagnosed with Crohns Disease and not cancer or another terminally ill disease. I am also so thankful that he has a doctor that puts his patients first and offered my son the opportunity to try the SCD Diet to control his disease instead of medication.
A long time friend of mine has been caring for her 16 year old daughter for over a year battling cancer. Her daughter passed away last night. I cannot imagine the loss of a child. I know she is in a better place and no longer suffering.
Hug your children and be thankful!
Good afternoon! Mom Rachel had a question for mothers about getting off of steriods/medications while on the SCD Diet. Her 10 year old daughter has been on the SCD Diet for 2 1/2 months now and is feeling good. This week she has started a flare and having diarrhea 10-12 times a day. She quit taking steriods recently that she has been taking for a couple of months. I know alot of you have had your children on steriods and other medications and taken them off. Did you child have a flare up or how did they react? I was wondering if her daughter was going through the “dying off” stage. She hasn’t noticed her doing that yet. But I’m sure it has something to do with the steriod. What do you do for your child on the SCD Diet when they get diarrhea? She was wondering should she take her off of the yogurt or fruit or??? Any tips, moms?
If you haven’t emailed me responding to the last post below about your child and their SCD experience, please read it today and email me at firstname.lastname@example.org. I would love to have all of the responses by Monday! AND if you are a patient at GI Care For Kids here in Atlanta, please be sure and let me know! Thanks!
Do you take your child to see a GI Doctor in Atlanta, GA, at Children’s Healthcare of Atlanta – GI Care For Kids??? EVEN IF YOUR CHILD DOES NOT GO TO THIS DOCTOR PLEASE TAKE TIME TO ANSWER QUESTIONS 4-9. I WILL PUT THE INFORMATION TOGETHER AND POST A SUMMARY. I THINK THIS WOULD BE A GREAT ENCOURAGEMENT FOR OTHER MOMS!!! THANKS!
Dr. Cohen, is my son’s GI Doctor at GI Care For Kids in Atlanta, GA. He started the SCD Diet test study Justin started 3 years ago when he was diagnosed with Crohn’s. His research nurse, Angela, called me yesterday and said he is asking for us to put together a list of children that attend their practice and are on the diet. I added the other questions just to summarize some results for other moms as encouragement.
PLEASE respond by emailing me at email@example.com with the answers to the following IF your child sees a doctor at GI Care For Kids AND is/or was on the SCD Diet. I think email would be better for privacy reasons instead of commenting here. All emails need to be to me by Monday, September 8. Thank you!
1. Child First & Last Name
2. Parents Name
3. GI Doctor Name
4. Child’s Age
5. Estimated time on SCD Diet (example – 3 years, February, 2011 – present)
6. Does your child follow the diet strictly or do they cheat or is it off and on? (example – follows diet most of the time, cheats socially)
7. How is your child doing on the diet? (example – Justin is medication free and symptom free on the diet)
8. Where did you hear about the SCD Diet? (example – My son’s doctor was doing a test study when he was diagnosed and we were offered medication or trying the study.)
9. Anything else you would like to share. (example – The diet is challenging and hard to get my son to stick to it strictly. AND/OR The diet has been a blessing and great alternative to medication. I am thankful our doctor gave it to us as an option!)
Thank you for responding! This should be interesting! If anyone is interested in reading the test study results from our doctor in Atlanta on the SCD Diet, email me and let me know and I will forward it to you.