My Son’s 4 Year SCD Update

Hello, everyone. I am finally sitting down and sharing our report for my son, Justin’s, four year pill cam results since being on the SCD Diet. If you have been following my blog for a while you know my son is now 14 years old. He was diagnosed at age 10 with Crohn’s Disease. He started the SCD Diet test study with our doctor, Stanley Cohen, at GI Care For Kids at Children’s Hospital in Atlanta, Georgia. We were thankful our doctor gave us a choice rather than put our son onto medication. My son took some vitamins and probiotics when he was on an antibiotic but was never put on any medications after he was diagnosed with a mild case of Crohn’s. He has been symptom free and medication free since the “dying off stage” of the SCD Diet (as long as he didn’t cheat on the diet). After 3 years on the diet, and being a teenager, Justin started cheating. Justin’s father and I, as well as his doctor, to let him choose his foods and try to eat healthy but off the diet somewhat. But you know how you give a teen-ager an inch and they take the mile! Lol. Just had gotten to where he was drinking cokes, sugar candies, etc.
We had a pill cam a couple of weeks ago. Justin’s blood work and stool samples actually came back perfect. But his pill cam results showed that his intestines were showing signs of small ulcers again. They said it was about halfway from when his pill cams were perfect to when he was diagnosed 4 years ago.
Justin has chosen to go back on the diet instead of choosing medications. We are not planning on going onto the diet 100% at this time. We are anxious to see how he does being on the diet majority of the time with some splurges, kind of like he was eating before he went off completely. I was starting to follow the Paleo diet some because it added a few extra items that helped him alot having been restricted for so long (maple syrup, sweet potatoes, natural chocolate chips). Justin is not showing any signs of symptoms. He is still feeling good. So honestly at this time I think he would continue to cheat behind our back if we didn’t give him some room to play around.
Justin has been very upset and mad about this diagnosis and not looking forward to it. We are VERY grateful his he healthy with this disease and it has helped him, but it is hard for him to understand and cooperate when he is so young and hasn’t felt any symptoms or suffered recently to where he remembers. I have talked to some moms whose children have suffered so badly they do not forget and will not cheat on the diet.
We have hopes and are anxious to see how this works for Justin. If being on the diet like this doesn’t help, then we will go back on it strictly.
Thank you for everyone’s concerns. I had hoped to have better news. I will say that after Justin was on the diet for a few years and was eating Paleo and splurging on glutten free pizza and make “wise” cheat choices his insides still looked perfect. There is hope for the future! I hear GREAT results from moms with children on the diet!
Please let me know if you have any questions you would like for me to ask other moms here on the blog or if you have something you would like to share!!! And KEEP UP THE GREAT WORK! We ALL know it is NOT easy!

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10 thoughts on “My Son’s 4 Year SCD Update

  1. Hi Paige,
    I’m sorry to hear about the results. I completely understand because it is exactly what happened with Austin. Call me anytime you need support. It was tough to start again, but you’ll get back in the swing of things in no time. I am a muffin making machine:-)
    Take care
    Angie

  2. Hi Paige,
    We moms seem to all be in the same boat paddling upstream with teens on SCD. My son is 15. He was on SCD for 1 year (age 12 to 13); everything was perfect and I was ever so grateful (always a love/hate relationship with SCD diet for me)!. He was growing, gaining weight, looked absolutely gorgeous and healthy. At end of 1 year, he started cheating (he was 12 when he started SCD, 13 when he started cheating on SCD). He would start showing symptoms, get back on diet, recover, and repeat. Unfortunately, by Jan 2014, the cheating had done something to his immune system and he caught the flu (was very healthy when on SCD 100%). This lead to a course of antibiotics that threw him into the most awful flare (like none we had ever seen up to that point). One year later, he is on SCD 100% and says he will never come off the diet. BUT, he’s also on Remicade because the flare went out of control and he most likely needs surgery to remove scar tissue in his small gut (which I think was caused more by the clarithromycin than the actual cheating). Doctor thinks once the scar is addressed, he can go back on diet alone as long as he does not cheat!! Sometimes, I want to scream at my boy….”why did you go so far off track?!!! Look what we are up against now!!!” BUT, it is his life. I was (still am) trying to protect him so much because of my own fears; I wanted to bubble wrap him from any Crohn’s related ugliness. The fact is…sadly, he has Crohn’s and he had to learn the hard way. And I can’t change that no matter what! Now the doctor says ‘NO CHEESE EITHER!” I’m having problems with that because cheese was never the problem…it was the damn cookies and junk he was eating at school. Would you believe….my son now says TO ME, mom, no cheese, no cheating! Sigh….I want to say…”you start cooking now, if you think it’s so easy!!”. But, I don’t. We SCD moms are the little engine that keeps saying “I think I can”….and pray always for an easier solution. BY the way, has anyone ever looked into MAPS bacteria and crohn’s? http://www.crohns.org/treatment/
    Margaret

    • Thank you Margaret for commenting. I have never heard of the MAPS Bacteria. I could post and ask others. I would love to talk to you on the phone if you would like to. Please email me at scddiet4kids@gmail.com with your number and when is a good time to call. Thanks.

  3. Hi Paige,
    Thanks for updating us. Sorry the news wasn’t better. I feel for you and Margaret, sometimes I feel like I’m talking to a wall when it comes to my teenage son. I know he cheats when he’s at school and out with friends and it scared me, especially since his most recent blood work showed a 3 gram drop in his iron levels. He tells me not to worry, that he feels good, but I know something isn’t right. Hopefully his new doc can set him straight. I will keep you both in my prayers. Again, thank you both for sharing, it helps me know that I’m not in this alone!

    Lisa

  4. Paige- You and Justin have been in my thoughts and prayers ever since we last spoke. And then he must be proud of him for choosing the diet route versus the medication. I know sometimes it would be easier just to take a pill, and I totally agree with Margaret about us moms having to be the” little engines that could.” I pray for the Lord to give you both strength, and that he will heal. Thank you for your update I am always thinking of you.

    • Thank you, Lisa. As I have said many times, I do this blog just as much for support for myself as to help others. It is great to make new friends like you.

  5. Thanks, Paige, for this detailed and thoughtful update. It seems we’re all in the same boat where our teens are concerned.Teens are known for their impulsiveness and fearlessness… In our kids’ case, however, the repercussions for recklessness is quite serious.

    When you say his stool tests were perfect, does that include the calprotectin test? I’ve been reading about how that’s becoming a good marker for inflammation even when no other symptoms are present.

    We agreed to let our then 12.-y.o. son have a weekly treat (usually healthy pizza is what he wanted) after he was on the diet for 6 months and all his tests went back to normal. I honestly think that was going OK for him. It gave him some relief and something to look forward to. Or if someone was having a bday, he could go ahead and partake with everyone else. This seemed like an acceptable risk and seemed to be OK for him as long as he was otherwise 100% SCD and eating yogurt every day.

    But as you say, the temptations of school snack bar and friends’ lunchboxes can be too much for them, and they give in. My son’s Latin teacher brings in donuts to share 2x/year. I can’t ask him not to bring donuts for his class! Declan needs to learn to resist. He isn’t there yet. He does very well for the most part, though, and we’re proud of him and have to remember to keep telling him that.

    That’s the hard part now… Knowing we have to let them falter and decide for themselves. It’s so hard to watch.

    One thing that helped for Declan was his GI actually presented his options to him last time we saw her: 100% SCD or x, y, and z meds. And she described the meds and the possible side effects. For some of them like methotrexate rare side effects include cancer. Then she said we were going to let him choose what he wanted. Thankfully, he chose the diet, because I think hearing about the awful side effects scared him. Also the idea that if inflammation isn’t kept in check, surgery could be in his future. This is the reality and they do get to a certain age where they can grasp this, I think.

    We’re back to 100% SCD now until we get the calprotectin test back to normal…not sure how much longer that will be. And then our GI said we should test every few months just to make sure if inflammation is happening, we know about it sooner and go back to diet 100% before things get out of control.

    Thanks, everyone, for sharing and commiserating!

  6. Will you contact your doctor and ask him if he knows of other docs around the country participating in the study? We live in SLC, Utah. Also what materials did you use to put the diet together for your son, how long did he initially take to heal? How long before he could have nut flour, or cruciferous veggies? Do you bleed with crohns? What are symptoms like? How could you tell he wasn’t tolerating something? It is so hard to get kids to communicate! Thanks! Pass us your sons email or blog. My twelve year old is definitely in need of empathetic friends!

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