UPDATE – March 18, 2015

Hello, everyone. I apologize for it being SO long since I have posted. I hope each of you will understand. I know each of you knows how exhausting the diet can be for everyone, especially us moms doing all of the cooking/shopping/planning. For those of you new or catching up, my son, Justin, is 14 years old now and started the diet right before he turned 10. He was “officially” diagnosed with Crohns then. He was lucky his doctor was starting the SCD Diet test study and offered it to us. He has been symptom free and drug free since his “dying off stage” on the SCD Diet. He started sneaking around and cheating on the diet after 3 years. About 6 months ago, I decided to let him decide for himself to go off of the diet. I decided he had to “want” to be on the diet for himself. I could not punish him to stay on the diet or make him do the diet. So at first we let him cheat socially, then he pushed me to cheat more and more to where now he has been off totally. I have tried to get him to watch what he eats and choose foods wisely, but I can’t say that he has done that.
Yesterday we had another yearly pill cam. We are anxiously looking foward to hearing from the doctor the results. I believe so far every child that has been on the test study that got off the diet has starting having symptoms again and had to go back on the diet. Justin has been on the diet the longest on the study so we are anxious to see what we find or hopefully do not find. I will update and let you know as soon as we hear. We also did bloodwork and stool tests. Justin is not and has not shown any symptoms since he has been cheating. He did have a mild case when he was diagnosed.
I continue to encourage each of you to continue on the diet fr your child and hang in there. Please contact me if you ever need to talk and need someone to listen. You are not alone. There are plenty of moms out there that understand! If you ever have any questions or have something you would like for me to post and share with everyone, please email it to me, scddiet4kids@gmail.com.
I will be posting again soon! Hopefully with good news!

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11 thoughts on “UPDATE – March 18, 2015

  1. Hi Everyone,
    Just wondering if anyone has a good Gastro in Massachusetts/Rhode Island? Our sons Gastro left the area and I am pulling my hair out trying to find one who will support us on SCD. I’ve checked the Doc’s on an SCD site but had no luck. My son is 16 now and has been successfully on the diet for about 3 1/2. He is diagnosed with Crohns. Thanks!!
    Lisa

  2. Paige,
    I’ve missed your updates and entries. I will most definitely keep my fingers crossed for good news !! Please keep us posted as to how it goes. Sure would be great to have a success story of this kind. It would be a great motivator for those of us still plugging away…
    Urte

  3. Hope that the pill cam show nothing!! 🙂 Teen years are tough! The same thing happend to my daughter who was diagnosed w UC and immediately went on the diet and never had meds. After 2 1/2 years on the diet, she decided she wanted to “cheat”. It has been almost a year since she cheats for one meal or a snack almost daily. However, she has no symptoms and all labs have been normal.

  4. Thanks for getting back in touch with us, Paige. I’ve been wondering if things were OK, and glad to hear that they are.

    We’re in the same exact boat. My son (now 13) has been SCD for two years now. We started letting him have a weekly “cheat” after 6 months and he did fine with that. But the temptations of the middle school snack bar got him, I think, and he was sneaking things at school…And we got more and more lax at home because it is so hard to do this day after day….and he seemed OK…So this went on for about 4 months.

    But then in Dec. of 2014, he started having symptoms and D again, and his calprotectin test was through the roof (though his other tests were only slightly elevated). Our GI, who supports 100% SCD, had a good, long talk with him about his medication options vs diet options, and asked him to choose. It truly is their choice at this age, not ours. We can’t control everything they do. So they need facts, albeit painful for them to hear, about the illness and side effects of meds so they can decide what they want for themselves.

    We were relieved that he chose to go back to the diet 100%, and he was back to normal after 2 months. WHEW. I think hearing about potential side effects of some of the meds (cancer, etc.) and the possibility of surgery at some point if he didn’t keep inflammation down really scared him.

    So, lesson learned. Our GI says a child can be outwardly fine but have a lot of inflammation during a scope (though I’d guess this would also correspond with off-kilter blood and poop tests), and the scope is the only way to really know for sure.

    Paige, I’m hoping we hear back with some good news from you. Thanks for restarting this very important discussion. Everyone is different, and it seems that SCD can “cure” some so that they can go back to a non-SCD diet, while others need to stick to it 100%

  5. Hey Paige
    please let us know the pill came results. With Austin being 17 and working, it is more difficult to monitor his diet. We are still on SCD for the most part. I am anxious to hear about Justin. Prayers for a clean report!
    Call me anytime.
    Angie

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