My daughter was born 3 weeks early but had no complications to speak of. She was almost exclusively breast fed with some minor intro to formula but around 4 or 5months of age, we notices some strands of blood in her poopy diaper. Upon seeing the Pediatrician, we were advised that it was probably a milk allergy. At that point, I stopped all milk and dairy in my diet and breastfed her exclusively till 20 months.
She never showed blood in her poop again….ie. never again till around age 2.5 yrs. Every time we would see some blood in her poop, we would go off to see the Dr. who would either find a small anal cut or some sensitive skin rash that would explain the blood. The blood was always like a bright red, small strand which was noticed only because of hypervigilant parents. This probably happened once in 2 months or so.
Fast forward to age 3.5 yrs, when one morning she had a really bloody stool. Off we went taking a picture of the ‘mess’ who sent us to a Pediatric GI @ Stanford that same week. There was no cramping, abdominal pain or any other issues. I must add that she has always had somewhat loose or broken up stool but she only had a BM once/day, max 2. The GI suspected a benign polyp and my daughter underwent a colonoscopy in Jan 2010 which again showed nothing major except for some minor inflammation. But the stool tests showed no infection, her blood work showed anemia and some other readings and her biopsy came back showing chronic inflammation all over the colon.
The recommended strategy was Sulphasalazine starting off with a mild dose since her symptoms were mild. However the GI agreed to wait it out for 6 months to see what happened since we were in shock and confusion having never really heard of ulcerative colitis or IBD. In those 6 months we maintained a log of her food and her stools blood indicators. We also started her on iron supplements, a regimen of VSL#3
In June 2010, we reported to the GI that we saw blood at least 10 times each month in varying quantities from small specks to a fair amount of blood (about 1/4 tsp worth) in her stools. She continued to have one BM/day with no pain and the consistency was loose/broken up like always. However in May 2010 she had an episode of Erythema Nodosum and in July she had an episode of wrist joint inflammation. She continues to grow along her chart and her anemia was resolved. The GI recommendation was to start Sulphasalazine and that there was no dietary therapy for this.
We almost started the meds but then paused and thought about it and decided to give Homeopathy a shot. We are still waiting for that to work. Then we decided to see if there was a food intolerance triggering her flares and started an elimination diet but we have had mixed success there. We are still in the middle of it and think that there is something that is triggered by wheat and lentils. We hope to add yogurt this week to see what happens. However now we have our doubts about a food intolerance triggering the UC flare and are now considering the SCD diet.
My daughter continues to grow normally, is otherwise healthy (touch wood) and has no other UC symptoms outside of the erratic rectal bleeding which comes and goes. The most blood we have seen since the beginning of this saga last Oct. has been 1 tsp of blood on 3 occasions. She still has one loose/broken up BM per day with no other pains or complaints.
My questions are
1) Anyone else out there with this kind of a clinically quiet UC?
2) Any chances of a misdiagnosis?
3) Anybody else tried SCD for a 4yr old? What is the success rate without disrupting this child’s normal life?
4) Are meds necessary to calm down the colon before starting SCD?
I know this has been a rambling post and apologize. I know my child is lucky to have a mild version of UC so far but I just want the UC gone completely and my daughter well again. Try as I may I cannot understand why the Drs. dismiss all diet therapy options and am hoping to find something that works for my child without having to pump any drugs into her if it is not necessary.
Thanks
My 4yr old daughter was diagnosed with UC in Jan 2010. She is a happy go lucky, otherwise healthy, active preschooler dedicated to all things fashion and style and pink.
I would get a second opinion. My doctor didn’t get my diagnosis right for almost a year. I found the symptoms on line and suggested it. He sent me to a GI doctor who confirmed what I figured out. The GI doesn’t think food is a big influence, but I know it because symptoms occur with dairy and very spicy food. I like my GI doctor at UCSF, but I need to find a new doctor for insurance reasons. My insurance won’t cover UCSF doctors after Dec. 31st. Anyone know a good GI doctor in the Burlingame-San Mateo area?
Dear Mom of 4 year old, I just read your post. Sounds like you are really up on all her blood and stool testing and making sure she is not anemic, all very impressive. I have Crohn’s, but I remember having my first flare in college over 25 years ago, and no one knew anything about my Erythema Nodosum that appeared on my shins and it was scary! I was in my early 20s, too, and i was thinking how hard it must be for you guys to not know what is going on with your daughter. I wish I could answer all 4 of your questions, but one suggestion–I would consult a naturopath (even before trying homeopathy), but that might be my bias since I have had such good help from the naturopathic docs I went to over the years. From my research, it seems the most common allergies are wheat, and milk intolerance. Also, I read something about candida albicans causing problems, so a really simple, careful diet–bland, no sugar, no refined food…. that kind of thing. The SCD is such a good diet if you follow it, really! I follow a strict diet, still, even being in remission.
One of my doctors said you could try the meds and then go off them and hopefully things will calm down. I think with such a young child you want to watch that “failure to thrive” absolutely does not happen! which you are…. now, I am rambling, but it is late and I am tired!….
Did you get a second opinion? I went to Boston’s top hospital for a second opinion….which turned out to be same as my small-town hospital. They said I really should take drugs and did not for five years, until I had to go on Prednisone…hang in there! Keep a close eye on her like you are doing.
Oh, and I remember being so excited cause I found a diet study just for SCD at the Brigham in Boston (where I had been seen…), and by then I was in remission and deemed too well to participate; however, the diet studies are few and far between from my experience! Frustrating, but there isn’t a lot of money in diet.
question: how old was the SCD author’s son when he was diagnosed with UC? I thought he was really young? The founders of the CCFA had a really young child with UC, like 15 months! Hang in there!
Hi Dede,
We did get a bunch of 2nd opinions and they all confirm the diagnosis. I think it was sealed when she had the Erythema Nodosum episode. I do wonder if maybe it is something else that is being missed only because she does not have classic clinical symptoms but then in reading other folks’ experiences on the site, it sounds like sometimes it can start off really slow and then start getting worse a few years down the road. If that is the case for my daughter, I really want to work at it to make sure it never gets worse for her. Lets hope the SCD diet works…I just read the book and now have to work up the courage to try it.
Thanks
I was born 3 months premature. And I was Diagnosed with Ulecerative colitis last year…After 5 years of not knowing what it was…I have many bloody stools atleast 3 a weeks usually around 1 tablespoon. They have put me on Diphenoxylate-Atropine. I take it before I eat, it slows down the colon. I dont know if your 4 year old would be able to take it…I started taking it when I was 13.
Hi there, I’m also a mom of a young child with UC. My son was diagnosed with UC in April 2010, and he is now 6 years old. I can feel your fear and pain. I know exactly how you feel. I’m glad to hear that at least your daughter does not have a severe case. My son actually got out of the hospital for the 2nd time just 3 weeks ago. We have been doing the SCD with him for over a month now and he is thriving! He has gained back 9 lbs. of the 10 he lost, he is doing great at school now, even though he had missed 3 weeks because of UC…I can’t tell you how happy I am to have found this book and I am so thankful to Elaine G. for writing it. I can tell you that I didn’t know about the diet until about 2 and 1/2 months ago, and agreed to put my son on strong meds like prednisone, asacol, imuran, and now doing Remicade infusion. the ped. GI he is seeing is a good doctor, but, like so many others, she doesn’t believe that diet has anything to do with UC or Crohns, etc. of course i didn’t know any different several months ago, so, now my son is stuck taking these drugs and, I can’t wait for him to stop them all! if you can absolutely help it, i would keep her off the meds and start doing the SCD now! it will be hard for her at first, but, she will adjust and start liking the foods. we do it together as a family so my son is not tempted to grab processed foods because they are not in the house, and I pack his lunch for school everyday with grapes, provolone cheese, and nut muffins. I wish you the best of luck with your daughter and hope her condition improves. :-)
Hi Linda,
My son just started Remicade on Oct 3rd, it started to work almost immediately, but we are seeing blood again in his poop. He is supposed to have his second infusion this Friday, but I am checking with his doctor to see if they can move him up a couple days. How was it for your son? Did Remicade work for him right the way? I am glad to see that the SDC diet is working for your son. I am eager to try it even his doctor said it doesn’t work. I believe his doctor is one of the best GI specialist in the field, but I can’t understand why they are so opposed to it. My son might be allergic to milk, do you know if the SDC’s yogurt still work for people with milk allergy? Thanks!
Good luck to your son, hope the diet will cure his UC someday!
Christina
Hi Christina, sorry for the late reply. I’m sorry your son was diagnosed so young! I thought my son was young at age 5! he is now 6. my son is also lactose intolerant, and he does very well with the yogurt. the lactose is eliminated during the fermentation. he likes the smoothies made with ice, ripe banana, and yogurt. he is also in a flare for the 3rd time! all due to tapering off of the prednisone. he will be getting his 5th treatment of remicade on november 6th. i don’t know for sure if it is helping him all by itself since he also is taking prednisone, imuran and just recently discontinued asacol(too hard on his kidneys)but asacol has worked well for other patients. even though my son is in a flare, i truely believe the SCD is making a difference. this is the first time he has had a flare and not waking up at night to go to the bathroom several times with intense spasms. he has pain right now, but not that bad, he is going to the bathroom 7 to 9 times a day right now but not as much blood, and not as much diarhea as before. my son’s doctor doesn’t believe in diet either. it is sad, because, there is so much proof and science that diet does make a difference, but doctor’s and pharmaceutical companies don’t make money off of “heathly” people. I wish you the best with your son. I know it is stressful and depressing to see your child like this. hang in there. we are all here to support you! Linda
Linda,
I am so glad that your son is doing better. I am sure his flare must have been scary. I hear you on your recommendation with keeping off the drugs and giving the diet a try. Thanks for your encouraging words and I will try to post an update once we try the diet.
Thanks and goodluck to you and your son.
Hi linda just read your son story which it is exactly what my son is going through. We might start remicade soon. My son is 5 years old. How is your remicade experience. Thank you
Hi Mom of 4 year old ,
Sorry for to hear what you and your daugther is going through… my 19 month son was just diagnoised with severe UC about a couple months ago and he had been hospitalized twice since August. I am not sure if SDC diet work but I have seen a lot of positive comment on the web during my research. I asked my son’s GI specialist about the diet, and she said she doesn’t believe it. But guess what? I am going to give it a try after my son’s flare up is under control. Good luck to your daughter. Please let us know how she’s doing if you do start the diet.
Good luck!
Hi Christina,
Thank you for your kind words and I am really sorry that your little boy is going through this. I thought 4 was too young for this but your son is even younger and it must be tough on both the child and parents. I will definitely post an update once we start the diet and if I learn any special tricks for dealing with kids and SCD.
Minoti
Hi mother of 4 yr old,
i have had this disease most of my life including childhood (im 44) and have been only recently diagnosed which was a relief but also anger that no one “no one” bothered to do a colonoscopy, grrrr, till now. i have tried a few diets,(none worked) but while sticking to the alkaline diet, and doing everything my GP (who is also a naturopath) has told me to do. iv noticed small improvements.. the only therapy tho that claims a cure ( and iv spent hundreds of hrs on the net) is chinese medicine and acupuncture. (they use lazer on children not needles). so i started one week ago and have 5 solid stools in this past week !!! i never have solid stools just diahrea and blood. im still having blood but no pain and thin solid stools. im ecstatic (and so is the chinese guy) that its started working so quickly. my blood has gotten thicker and darker which hopefully means its old blood that is being cleaned out.he also gave me massage techniques for my stomach, which is rubbing clockwise in a circle 50 times and then balance that with another 50 in the oposite direction. also from the bottom of your ribs rub gently downswards only towards ur pelvic bone again 50 times it strengthens intestines he said.
About the time you were writing this, our Isaac was 2.5 and finally getting a UC diagnosis. It sounds like similar moderate case as your daughter. You might peruse our blog for details. We’ve tried various dietary modifications with some success–We haven’t found any perfect regimen yet, but we think a big factor is encouraging good intestinal flora.
Hi Troy,
Thanks for the comment. I will look through your blog. It is interesting that you mention intestinal flora since we also seem to have come to a similar conclusion and are trying to focus on probiotics as a therapy. We have still not started her on meds and in fact had a couple of good months but things seem to be acting up again. We tried looking into diet related triggers but have yet to find any consistent correlation. We cannot bring ourselves to try SCD yet despite lots of reassurances and research. I wish you the best for Isaac.