Worried Mom with 5 Year Son with Severe Ulcerative Colitis

My 5 year old son was diagnosed with Ulcerative Colitis in April 2010.

He was starting to get better and was in Remission for 3 months with the use of several harmful drugs such as Asacal, Prednisone, Imuran, and now Remicade Infusion. Unfortunately as of last Thursday, he had a bad relapse with fever, 10 to 15 diarrhea bowel movements with lots of blood. He is taking an iron supplement 2x’s a day to help with this. His current Ped. GI. is pushing surgery. She does not believe that SCD can help with his diagnosis. I disagree! He has been on the diet with the probiotic home-made yogurt now for 5 days and is starting to show some progress as of today.

I would love to hear from other Moms & Dads who have young children suffering from the same thing, are succeeding with the SCD and are facing the possibility of surgery. Thanks so much, worried Mom with 5 year old son with UC.

9 thoughts on “Worried Mom with 5 Year Son with Severe Ulcerative Colitis”

  1. hi, my son is 5 and was just dx w/crohns/uc. I would love to hear from you so we can talk about what you are going thru and info I have found out so far. thanks Melinda

  2. I’m no mom nor am I child, though I’m sure others would disagree, :)

    I’m having trouble refraining from swearing at the fact that your Ped. GI wants your 5 yr old son have surgery. Two words for her: “YOU’RE FIRED.”

    Check out these email lists for helping others follow the SCD. Likely, full of parents who are willing to help you!

    http://www.scdiet.org/5community/email.html and from that page, I saw a link to something that might help: http://health.groups.yahoo.com/group/SCDietkids/

    BTW: I started on SCD as a 24 yr old. It radically changed my life for the better. I hope it does the same for you and your son.

    1. Hi Reid, trust me, I came close to at least slapping her.lol. Unfortunately, she is just another one of those hundreds of docs out there who only believe in modern “money hungry” medicine to treat UC. I would love to take him to see a Naturapathic/Heliopathic doc right now, but, my insurance does not cover and we are tight on funds like most right now. I think I had some faith with this doc when we first started seeing her, but, now I don’t. I plan to just allow her to treat my son long enough to get him off his current meds and hope after this my son will never be on meds again! I still have guilt for consenting to the drug treatment in the first place, but I had no idea at the time about SCD and its benefits. We were so desperate to get him some relief. We live and learn. He is starting to show some improvement on the SCD after 6 days! thanks for your reply and support. I will check out that website. Linda.

      1. How can you blame yourself when you were taught that the allopathic way is the only way that exists? If you were enslaved to sit in Plato’s cave and only view the world as shadows on the wall, that’s not your fault.

        I hear you on insurance co’s not supporting Naturopaths. :( That needs to change.

        1. I know right! the Medical World(Communism) wants us all to belief that Naturapaths are “wackos” or “voodo” doctors that should not be supported as actually knowing what they are talking about. ok, maybe I’m being a little extreme, but, up until this point I myself was unsure about natural doctors because of what society wants us to believe. I went to a naturapathic doctor website here locally, (there’s only about 2 in Orlando,FL) and, sure enough, “we do not accept any medical ins. payment in full is do at time of service.” I’m just trying to put all my faith in this diet and I know in due time he will adjust to it.He’s being very picky about eating because his sugary favorites are gone and he is only 6 tomorrow. His stools are already showing improvement though!

      2. My daughter was diagnosed with it earlier this year. She is 4.5 yrs right now. Her symptoms are mild enough that we have chosen to wait to start on the drugs. She has suffered a couple of side effects of Erythema Nodosum and joint inflammation but the typical UC symptoms are limited to loose, bloody BM (typically once per day). Not that I am complaining but I am one of those types who wants this gone once and for good. We have a prescription for Sulphasalazine that is in our back pockets while we pursue other options. We have seen a Homeopathic doctor who claims that he is accustomed to seeing this cured. His remedy does not seem to have worked for my girl yet. The interesting thing is that he was a Stanford trained MD who decided to go the Homeopathy route back in the 70s. We are currently experimenting with a Gluten/Dairy/Corn/Soy/Legume free diet for the short term to determine if there is a dietary trigger for her flares. I can’t say that we have found much other than wheat and lentils being big triggers. We might consider the SCD diet soon but shuddder to think about it since I am dealing with a foodie and a fiesty little 4yr old.
        I am looking to see if I can hear from other parents who are trying to deal with this scary disease and trying diet or alternative therapies.


      3. My daughter who is ten starting having bloody stools in September 2010. After months of being misdiagnosed by her pediatrician we finally went to our local GI doctor. He knew right away that she had UC. He admitted her into the hospital right away and the nightmare started. Our poor ten year old daughter went through hell! After being on prednisone and then Remicade for about a month, the GI team at Children’s in Los Angeles decided she would have to have her colon removed. She now has a stoma and an Ostomy bag. Our daughter is doing really well with it. Also she is looking forward to having the Ileostomy reversal. I believe that is what keeps her so positive everyday. Actually our biggest issue are her joints and the constant pain she deals with. Now that she is off the steroids we are hoping her joints get back to normal soon. Hardest thing for her is not being able to play soccer. She was really good and plans to play in high school–she will. What has got us through this is that our daughter is so strong and never once has complained about what has happened to her. We have been learning so much from our little girl. We are so proud of her and just thank God everyday for making her well again and having her home finally!

      4. Our 8-year old daughter was diagnosed in March of this year, although I believe she has been suffering with the preliminary symptoms for the last couple of years (mis-diagnosed with constipation, etc.) Since her initial diagnosis in March, she has had two more flares, the most recent of which landed her back in the hospital for another week. This time, the doc felt that her flare was triggered by Giardia (have NO idea where she might have gotten it). Each time she has a flare the doc puts her on heavy steroids in addition to the Asocol and Imuran she takes for maintenance. This time however, we did not give any prednisone. Instead, we started the SCD diet and are following it to a “T”. Although it is a challenge for her to eat “SCD legal” foods all the time, we have all realized that it is the only thing keeping her really well for the first time (even between her other flares she never felt really good). You have to be very diligent with the diet, and read ALL LABELS (especially on meds and packaged foods. If you (your child) can stick with it, it can help heal their gut and make them feel a lot better. We just stopped the Imuran (with doc approval)and she is still doing very well. I would never have believed that the SCD diet works, but it does.

      5. Hello, There is a book that was published in September of 2011 and released around October of last year, so still fairly new on the market, that I believe you may find helpful and inspirational for you and your son. I purchased mine at my local Barnes and Nobel…just phoned them and they ordered it for me. The name of the book is “Two Steps Forward, One Step Back” (A Journey Through Life-Ulcerative Colitis and the Specific Carbohydrate Diet) by Tucker Sweeney and Carol Thompson. In a nut shell a young man diagnosed with Ulcerative Colitis talks about his journey and his journey with the diet. Additionally, his mother has chapters after hers from her perspective. It helped give me the motivation to stay on the diet, continue to cook, and keep our heads up through our own son’s trials with Ulcerative Colitis. Additionally, there are some great recipes in the back of the book (burritos!). Take Care and Best Wishes!

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