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?
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?
Woohoo! A great report from Mom Urte! Thank you so much for sharing!!! And she also has a great question. I would like for you all to leave your thoughts as well!
Mom Urte wrote:
We finally did some bloodwork (mostly to check on med side effects) and all but 3 of Peppi’s markers came back normal. After 2.5 month on SCD, I’m sure you can understand how elated I was. It makes all that work worthwhile.
With this good news, I am now hoping that we can start decreasing his meds sooner rather than later. What I am wondering, since you never did meds with your son – did he ever have a full-blown flare after you started SCD or just smaller set-backs ? If so, how did you handle them ? Just curious, because I am such a worry wart and have a tendency to get freaked out pretty quickly.
I’m so happy for you and your family! Yes! It makes it all worth while! My son went through the dying off stage after being on the SCD diet. His bleeding got really bad during his “dying off” stage, then he was fine. Has your son experienced the “dying off” stage yet? Everyone I have ever talked to has had a different time frame experience with this. Everyone is unique. Justin did occasionally for the first year or two have a spell of some bleeding. But each time it would eventually be revealed that he had been sneaking and eating something he wasn’t supposed to eat.
Please remember that every one has stomach aches, sickness, bleeding, etc. I had to learn that even when your Crohn’s child is feeling bad or has a stomach ache, or has diarhea that it’s not necessarily because of the Crohn’s! Everyone gets sick! Just take it on as if it were your other healthy children. Don’t freak out. Keep on track. If it is because of the Crohn’s you will eventually figure it out. But look at every ailment as a normal illness or cold. And if it is from the Crohn’s, sometimes you might never realize what food or item caused it. But that is one reason I highly recommend keeping a strict diary.
Keep up the good work!
Mom Nicole would like our advice. Please read her story and question below and leave a comment. I know I have spoken to a few moms who have had trouble getting their children to eat at the beginning. I am hoping you can help Nicole. And even if you do not have experience with this, perhaps you have some ideas or advice. Her child is younger than most of ours that I have talked to. I appreciate any advice you can leave! Thanks!
Mom Nicole wrote:
I am looking for some help. I just put my 20 month old son on SCD and it is not going so well.
We were on GFCf for about a month when his dr recommended we get a little stricter… so here we are.
My son was only eating cheese, waffles, crackers and pasta up until a month ago.. so he is def in shell shock.. and he is refusing to eat any of the legal foods. He just throws it right off his high chair tray!
I slowly started to integrate the foods at first and when that wasn’t working I decided to go cold turkey, but he is refusing all foods! He even lost a pound.
I am just looking for some real moms input. My dr said to keep strong but I am so nervous and hate to hear his belly growling. Did you go through this? Do you know of any moms who have tips or advice?
Thanks in advance for any help you can give!
I spoke with Nicole on the phone the other night. I hope some of my advice has helped. I encouraged her to stick to the diet as well. I told her to try to get creative with the foods and keep trying to get him to eat. I recommended trying smoothies if she could get him to drink them and maybe sneak an avacado in there if she can to add calories. I shared with her how to make homemade fruit strips in the dehydrater and maybe drying some fruits and seeing if would eat them. I also told her to look for a recent new strawberry cupcake recipe that was posted. Maybe he would eat that.
And after thinking some more about it, I know from my children’s friends and keeping children that there are ALOT of picky picky eaters out there! So don’t think that just because your child won’t eat something or eats the same thing all the time that it’s necessarily because of the SCD Diet. That’s the way ALOT of children out there are.
Good luck, Nicole! And please keep in touch and let us know if you need anything else. I am hoping other moms will leave you some helpful advice!
Mom Trisha emailed me seeking advice yesterday. Her 6 year old son has Autism and is just starting the diet. I have read lots of benefits from being on the SCD Diet. I know besides being used for Crohn’s, Colitis, IBDs, it is also beneficial for Autism/ADHD. Most moms following this blog have a child with intestinal issues. I know these moms will still be of great help commenting to help Trisha with the SCD Diet. I was curious if there are more moms following that have children with Autism. We would love to hear from you!
Please, read Trisha’s email below and leave comments! Thanks!!!
Mom Trisha wrote:
We started the SCD intro diet for my 6 y/o ASD son on Thursday. He was hungry and cranky but eventually ate 2 chicken/egg pancake at night. The next morning he awoke, went back to sleep and was generally in and out of it all day. In the afternoon he threw up and I put him in an Epsom Salt bath to relax. He was fine and back to resting for the evening. He is the same today, refusing all juice, food, etc. I’ve offered homemade electrolyte, pear sauce, etc. I made Banana/egg loaf and butternut squash fries and he won’t touch it. I’ve resorted to setting a timer and making him take sips of juice/water. He’s drinking water all day (not a lot but keeps sipping).
I’m kind of at a loss here. I’m not sure what to do. He becomes pretty mad and combative when I offer him the juice or anything else.
Any advice you could lend to this scared and confused momma?
I had the opportunity to speak with Trisha on the phone last night. I suggested that she skip the intro diet and stages and go straight to the basic diet. I also told her that as with my son, and many others I have heard, the first couple of weeks you start feeling drained and fluish. My son was laying in the bed and fluish and at the end of his two weeks he just woke up the next day and was his old self again.
Although my son started the SCD diet at age 10 for Crohn’s Disease, I have seen other beneficial changes. My son is the “active” child! He has never been able to sit still and read a lengthy book. After starting the diet he is alot calmer and reads assigned school books. We have seen alot of improvement that is hard to explain.
I discussed with Trisha also to learn to be creative with the legal foods. My son loved have “Banana Foster” (Bananas sliced into skillet with butter, honey and cinnamon). I recommended doing like we did. Go through your grocery store and buy one of all the legal fruits and taste them and also dehydrate some of each and see which one your child likes. Justin’s favorite was the drived pineapple! It’s a must try!
I’m looking forward to hearing your comments! Good luck, Trisha! Please keep in touch!