New Mom Carrie Seeking Your Advice Moms!

I recently heard from a new mom to our blog seeking advice! Welcome, Carrie! As with all of us, getting starting can be confusing and intimidating. So please read Carrie’s daughter’s story and comment with your opinions. I know I would NOT be where I am today on our SCD journey without advice and support from alot of Moms out there! So let’s pass it on and let us know what you think!

Carrie wrote:
I’m a little desperate for an opinion. Our 14 year-old daughter was diagnosed with UC in November. Her doctors now feel her diagnosis is Crohn’s. They would like to change her meds and restart a course of prednisone which we are half way through. In December we discovered the SCD Diet and I ordered several books on the topic. We began the diet and although we are still learning she thinks it’s helping. For example, I recently discovered through this forum I believe that our yogurt maker is running too hot so it’s possible the yogurt we have been using was not beneficial to her all this time. Although her tests are coming back with some improvement, it seems she needs stronger medications (6mp) at this time. I wonder if hearing from so many moms you would know how many IBD kids still take medications and if this diet has been unsuccessful with some children. I have only read of the positivies of this diet but maybe it doesn’t always help? Her doctor said we can give it a month to see if she will make progress on the diet but he believes her symptoms may become worse in that time. I was so hopeful we would be able to help her and I quite honestly was heartbroken when they explained the medications she would be depending on. She dreads more prednisone. Also, I can’t help but wonder if the iron supplements worsen her symptoms. I know I cannot tolerate them so how do we know that the iron isn’t causing the problems we are trying to avoid? That said I know she needed them. I have never felt less education and more helpless. Any thoughts? I am so very grateful you are willing to listen.

My thoughts:
Carrie, thanks for coming to us for help. Please remember these are just my “opinions” from having been through the diet and talking to others. First from reading your story I want to say to use your motherly instincts. I have learned from talking to SO many moms that the doctors do not always know what’s best for our children. I say this from your comment on the iron supplements as well as the dosages and variety of medications. If you say you are wondering if this worsens her symptoms, then maybe you could research SCD foods high in iron and try those.
MOST IMPORTANTLY I would like to stress to you that “one month” is NOT going to be enough time to have your daughter on the SCD diet to see the results you are looking for! Please try the diet for at least 6 months if not more! It takes some children 4-6 weeks to go through the “dying off stage” (please search “dying off stage” on the blog and read posts). Your daughter did not get ill within one month. She’s not going to heal within one month!
From talking to other moms, I have listened to many tell me how the doctors push the medications. I have had moms tell me how they have said no to medications. I have heard there are SO many doctors out there that do not believe in the diet. You commented your daughter already feels like it is working! Yeah! Keep going! I promise it DOES get easier!!!!
I was fortunate my son’s doctor introduced the diet to us. He gave us the option of medication or trying the diet. Justin has been on the diet 3 years now and has been symptom free (after the dying off stage) and medication from as long has he hasn’t cheated! So I cannot give you personal advice on the medications. I know there are moms out there that have had to give there children medications and some are still taking medications, BUT the SCD has helped tremendously! I hope those moms will comment and share with you!
We are here to help! Do not hesitate to contact us with your questions, concerns or just to vent! We’ve all been there!

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15 thoughts on “New Mom Carrie Seeking Your Advice Moms!

  1. Hi, Carrie–

    I know how hard this diagnosis is. My daughter was diagnosed with Crohn’s in mid-January of this year, and was quite ill. The first GI refused to consider non-pharmacological options, while acknowledging that entereal nutrition is used as front-line therapy in Europe. Everything I read indicated that my daughter was an ideal candidate for dietary therapy, but the first doctor chastised me for reading too much. I knew we needed a different doctor.

    I found that the SCD was being used as a treatment option by doctors affiliated with Atlanta Children’s Hospital, Stanford University Medical Center, and Seattle Children’s Hospital. These are not small places, and bacteriotherapy, which SCD is a form truly seems to be the cutting edge in the treatment of Crohn’s and other auto-immune diseases.

    We decided on Atlanta (we are in Kentucky, so it’s a seven-hour drive) and started our daughter on the SCD while waiting to get our first appointment with Dr. Gold. In those three months, our daughter gained five pounds (after a huge weight loss) and she went from diarrhea to almost normal BMs. Dr. Gold thought she had a good response to the diet, so she never took meds other than a short-term suppository.

    We go back in April for follow-up lab work, about which I am optimistic because our daughter looks and acts healthy. It is truly unbelievable, especially considering that the first doctor’s opinion.

    • HI Suzanne/Carrie – My daughter was diagnose with Crohn’s at age 9 1 year and 4 months ago. We started the prednisone and 6MP because I didn’t know any better at the time and that’s all the doctor’s push. After she was on 6 MP for almost 7 months (and in remission by the doc’s standards) we took her off of 6MP and began following a holistic route, which of course is frowned upon by the medical community. She is seeing an Integrative Doctor in St. Louis (6 hour drive for us) and we’re peeling away the layers of causal points for this disease. We have not dove into the SCD diet because she has been doing pretty well with our current course and she already has so many other food allergies that I worried about taking even more out of her diet.

      Suzanne – I think you are the one who recommended the Manuka Honey Wound Cream for anal fissures. How are your daughters fissures doing? We still have them popping up once in a while but nothing major. Have any of you ever had a fecal calprotectin test done to test inflammation w/in the intestinal tract? I’d be interested in hearing from any of you who have and the results your children had.

      • Hello, Jody. Would it be ok with you if I post your question on the blog about the fecal test? Everyone that follows the blog gets the new posts emailed to them, but they don’t necessarily get the comments unless they come back and read them.
        You mentioned your daughter has lots of food allergies. I was told for years when he was younger that his occasionally bleeding and side effects were from food allergies. He was restricted from so much. Then after he was diagnosed with Crohns and we started the SCD we went to a new allergist and the food allergies did not show up. I’m sorry I do not remember all of the medical reasoning and terminology they explained to me, but I understood it as the allergies were showing up due to his inflammation…. Peanut butter was one and he’s eating all of these nut flours and natural peanut butter now. Chocolate was one and I let him occasionally have some as a treat after being on the diet for 3 years.
        Thank you for commenting and please let me know if you would like me to post anything.

        • Hi Paige – this all seems so overwhelming to me right now. I don’t even know where to start. I have Elaine G’s book on Breaking the Vicious Cycle but have only gotten through the first few pages of it. Any advice as to where & how to begin? Is almond flour the only legal flour? Where do I find good kid recipes? Any advice you can give me is greatly appreciated. I worry about her emotional state upon finding out more restrictions are coming her way. Thank you for your expertise πŸ™‚
          Jody

          • Hello, Jody. Email me your phone number to scddiet4kids@gmail.com and when is the best time to call you. FYI to others reading the blog, I did my best to summarize the diet in posts under “Getting Started”. I recommend reading all of the posts under this category. Talk to you soon Jody.

        • Hi Paige, II just started SCD five days ago. My son, 12, was on the soup for 4 days. Diahrrea got better but not resolved. What to do next. Do i continue the soup or move on to stage 1. This will me our last reaort before the infusion. I really do not want to do it. I really need guidance on the SCD. DOES ANYONE KNOW IF THERE IS A SUPPORT GROUP HERE IN FLORIDA? Thanks
          Ana

    • I was so pleased to read your comments.
      my son was diagnosed with UC this past march. We have tried Apriso for five months. It worked and then it stopped working. Two rounds od Presnisone and now Colazol. We are having a hard time to get him out of this flare. Just started SCD five days ago and i am in need of guidance. Although inread the book, i feel confused as to which foods to introduce next. Pls help.

  2. Sorry about the typos; I’m on my phone and posted too soon. I should have said that my daughter gained five pounds in three WEEKS on the SCD, not three months.

    Also, I meant to end by saying that her recovery has been remarkable considering that the first doctor felt she needed drugs to achieve remission.

    Would you consider taking your daughter to someone who is more up to speed on the new (though admittedly small) studies showing the SCD works? I am now at a point where I personally wouldn’t trust a doctor who isn’t up on the research.

  3. Hi Everyone,
    We have been on the diet for 2 years. We also see dr Gold in Atl (5hrs drive for us) our daughter (12yo) has UC and only uses SCD as a treatment plan. She had gain 21 lbs and grown a ton in 2 yrs. It took her 3 months to show her 1st 1lb. she is symptom free if she doesn’t cheat.
    Our son has Crohn’s. He is on Pentasa and SCD. It took him 6 months after starting SCD to show his first 3lbs after a yr of negative weigh gain. During that yr of negative gain weight, he had been on prednisone, entocort and Pentasa with little improvement. After 1 yr on SCD all meds were removed including Pentasa. Unfortunately, after 8wks after removing Pentasa he had a major flare up that primarily affect his appendix and lymph nodes around it. The appendix was removed after multiple test and a colonoscopy that showed no signs of active Crohn’s. The docs were amazed that his intestine was looking so perfect. They believe that it was due to the SCD diet that his intesting remain so healthy. Although doctors wanted to hit him w stronger med to deal with his lymph nodes. I refused and told them that SCD and Pentasa have worked for him before and that it would again. They told me that they would respect that. After a month he back back on his feet. It was a slow process as Pentasa is slow acting and it also had to reach the lymph node no real direct access. He is currently on Pentasa and SCD. Has gain 18lbs in 2 yrs. He acts completely healthy! Good luck! SCD works it’s just slow… But thrilled that your daughter is already seem improvements! Trust your daughter!

    • Hi Giselle, I just started SCD five days ago. My son, 12, was on the soup for 4 days. Diahrrea got better but not resolved. What to do next. Do i continue the soup or move on to stage 1. This will me our last reaort before the infusion. I really do not want to do it. I really need guidance on the SCD. DOES ANYONE KNOW IF THERE IS A SUPPORT GROUP HERE IN FLORIDA? Thanks
      Ana

  4. Jody,

    Yes, I forgot about the wound honey. We used that and suppositories until the perianal area healed. That took about two weeks. It’s hard to say what role they played as we were already doing SCD, but the combination completely resolved the fissures. I think the wound honey played a role because the fissures were largely external, outside the area where the suppository was delivered.

    • Thank you! Any experience with the Calprotectin test? I feel like there has been so many success stories for kids with Crohn’s & UC. I’m just scared to try another new something and then tell her there are so many more things she can’t have…it’s been a very emotional journey which I’m sure you can relate 😦 Thanks for listening.

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