5 Year Old With Ulcerative Colitis

Introduction:

My daughter, age 5, has been having bloody diarrhea for 3 weeks now. We had a colonoscopy done last week and are waiting on the results from the biopsy. The Gastro doc thinks Ulcerative Colitis and after the hours that I have spent researching in books and on the web, I am pretty much convinced this will be the outcome. Of course I am upset, angry, confused, and many other emotions at this point but I am also ready to be completely aggressive in getting this thing figured out and solved for her. I made that promise to her and myself. I am looking for words of hope and encouragement that my beautiful, smart, and confident daughter will not be lost to this.

Colitis Symptoms:

She was prescribed Asacol? and is continuing to bleed 3-4 times a day.

My Baby Girl Has Ulcerative Colitis

My heart drops every time I look in the toilet. Thankfully she is in pretty good spirits and has only some stomach pain before using the bathroom, however she has started having headaches mostly in the morning and evening. I am unsure if this is from the blood loss or the medication.I am looking for words of encouragement. I would love to hear from other parents who have young children with this disease and what forms of treatment they have tried.

  • How has it affected your child during a flare up and in the long term?
  • How long does the bleeding usually last?
  • How long between flare ups?
  • Have you tried alternate forms of treatment like diet?

I keep reading about the SCD Diet and how it is almost a miracle of sorts. My worry is compliance at such a young age. My daughter is already the best eater out of my three small children. I know that I would have to put my entire family on the diet or at least a modified version and I worry about upsetting the rest of the household. In the end I know it would be well worth it and to be able to heal her without the use of intense medication with a broad range of side effects sounds very appealing, but i just wonder if I will have the patience and discipline to do this. I am still in shock that we are going through this. My daughter is such an outgoing, loving, bright girl and it literally makes me angry that something like this is happening to her. I hope in time i can feel more in control and assured that this will not beat us and that I won’t break down in tears when I am updating family members on her condition. Unfortunately I am not there yet.

written by Kristin

submitted in the Colitis Venting Area

36 Responses to “5 Year Old With Ulcerative Colitis”

  1. TracyMarch 12, 2012 at 6:34 am #

    Hey Kristin, I also am a mother of a daughter who suffered from UC. She at the time had just turned 14 & started to become very sick. Lots of diarrhea & lots of major weight loss, it seemed no doctor could figure it out. They finally sent us to a GI doctor who then did a colonoscopy. Where they then found out her colon was so bad they started her on meds right away. It seemed to help for a little while & then would come rigjt back, no energy, lots of bloody stool, lots of weight loss, nausea, & many others not so fun. We did this for almost a year when she got really really sick in the middle of Oct 2011, lots of high fever every day bloody stool, this just kept getting worse every day. We finally went to the hospital where they admitted her. She had C-diff, contageous infection, she was already taking remicade with no luck, so they tried her on lots of other major meds thru a picc line. It was aweful to see my baby girl go thru all this. Finally after going in for her 3rd colonoscopy the dr decided to put her back in the hosptal with more meds, nothing helped we were there for 14 days, so we decided to talk to the surgeon where we went ahead & decided to have the first surgery so on Dec 21,011 she had the colectomy surgery. She is doing so much better. I will pray for you & your baby girl!!! I know its hard roa, good luck to you both!!!!! Tracy

    • Kristin
      KristinMarch 17, 2012 at 6:00 am #

      Thank you so much for responding and good luck to you and your little girl. The words of encouragement are so appreciated.

  2. RhondaMarch 12, 2012 at 6:49 am #

    Hi Kristin,

    I really hate to hear that about your little girl. It has to be heartbreaking. I have 2 small children and often fret about their well being. I have had UC since ’96. It went on something fierce for 7 years, THEN, I had an appendectomy (my appendix went bad) and was in remission for 8 glorious years! No problems during either pregnancy. But now, I’ve had a non-stop flare since Dec ’11 and have lost a ton of weight. Still breastfeeding DD too.

    I just started the GAPS diet. It is VERY difficult to let go of our normal ways of eating, but I think it will not only help with the UC, but so many other allergies in the family. I’m convinced that since I was fed formula as a baby, that may have triggered all of this. I’m curious, was your baby girl breastfed or formula fed? I am in no way judging either way. We all have to make decisions on this for different reasons. I nursed my son for 5 1/2 mo’s and supplemented w/formula. My daughter is pretty much EBF still @ 11 mo’s with about 7 or 8 times getting any formula and of course she’s now taking solids too. I think that getting that breastmilk either from mom or a donor makes a huge difference in the development of the digestive system.

    That being said, I too tried the Asacol and Predisone and hated what they did to my body, how they made me feel (other than the UC) and the mental fact of having to take it every day. My docs talked about me getting a pouch (surgery). I’d rather try anything than go to that extent. It’s really difficult for someone the young age of 5 to understand it all and their bodies are still rapidly growing and developing and need all the nutrients and calories they can.

    Try the SCD or GAPS diet along with meds, then you may be able to wean her off the meds later. Look at ways to heal her whole body: mind/spirit/soul. Just get her to take deep breaths, even practice yoga, seek out a chiropractor that specializes in this and any other alternative healing. It couldn’t hurt.

    Best of luck!

    • Kristin
      KristinMarch 17, 2012 at 6:42 pm #

      Thanks for your response. i exclusively breastfed my daughter for the first six months of her life and continued breastfeeding with the occasional bottle of formula till around 11 months. I haven’t heard of the GAPS diet but I will def look inot it. She just got put on prednisone and the bleeding has almost completely subsided so i am hopeful. The doc said that if she stops completely before the week is up she will not have to wean off the medicine. Does that sound right? I am thinking of getting a second opinion even if this clears up for now just because when I brought up diet to our pediatric gastro she said diet plays no role in this whatsoever. That just seems crazy to me. How can it not?! Anyway thanks for sharing your story. i am deeply encouraged by all of the responses.

  3. mikeMarch 12, 2012 at 6:56 am #

    Hi kristin. i have a 5 year old boy who also has uc. he was diagnosed last year in june. he is on medication but he wont take it on a spoon so have to mix it in drink. it is hard at times when he says his stomach hurts if its due to the uc or not. he still eats what he likes its just finding what irratates him the only thing that has changed is he dont drink cows milk has goats milk which is easier for the intestines. if you have a twitter account we could ask eath other questions as we in same posistion.

    • Kristin
      KristinMarch 17, 2012 at 6:44 pm #

      Thanks Mike. Sorry to hear about your little boy. It is tough to see our babies hurting. Unfortunately I don’t Twitter (I hardly even FB) :)

  4. DarciMarch 12, 2012 at 10:09 am #

    I can’t help you from a parents perspective, but im 24 now, and i was diagnosed officialy at age 8. It will be tough, as a sick child you dont know why all this pain is happening and why you. you will lash out at your parents, even though they are there to help you.

  5. joanneMarch 12, 2012 at 10:57 am #

    Kristin,

    I am so sorry to hear about your daughter. No child or adult should have to suffer with UC!

    I have had UC for almost 20 years, and i am just going through one of the worse flare ups ever. Just cant get it back under control and i am going to order Adams book and start the diet.

    Personally, I found that dairy is the worse for me. So try and keep her away from dairy. I know its so hard to do that but if she likes chocolate… get her dark chocolate instead of the milk chocolate and if she likes ice cream (which im sure she does) try frozen yogurt instead of ice cream. I also found out that sauces or gravy really bother my US too.

    I started going to a new dr in October. He tried a few medicines on me and the best one that i found that works for me is the Asacol HD. Right now i am taking 6 pills a day. He also prescribe steroids, but i have yet to take them. I was on them about 15 yrs ago and the side effects were terrible.

    Try and stay positive. Once they have your daughter on the right meds it will all work out. then its just really watching her diet.

    Keep us posted on how you and your daughter are doing.

    Joanne

    • Kristin
      KristinMarch 17, 2012 at 6:46 pm #

      Thank you for the response! i hope you start to feel better soon.

  6. BevMarch 12, 2012 at 4:06 pm #

    Hi Kristin…

    Like everyone else has said, I’m sorry for you and your daughter. This disease is a real pain in the ass, and I am not trying to be funny.

    Unfortunately, everyone’s UC is unique, so it’s hard to answer the specific questions that you have.

    I know that medical drugs do not cure the UC. It can go into remission, but it seems that once it comes back, that particular drug does not work again, so patients seem to get on the drug ‘merry-go-round’ each time a new flare up happens. Again, unfortunately, these drugs can be downright dangerous. Steroids, remicade, immune suppressors. (It still seems so strange to me that anyone would ever want to suppress their immune system…seems like a no brainer that the answer would be a resounding NO to that). I suppose, what I am saying is, to try as much diet (like the SCD) and natural stuff (like lots of probiotics) and any other thing that comes along that is not going to harm your little girl, especially in the long run.

    Have you heard of fecal transplant? You can google it. Another natural thing that is offered, but you have to look for it. No doctor will suggest it.

    Lastly, I believe that UC can be caused by antibiotics. Has your daughter been on them at all in her life? My last flare, which has been going on for over a year now, happened after I took avelox, a strong antibiotic, for pneumonia. Before that, the previous flare, was caused by my taking minocin, for acne, which I did not even know was an antibiotic! Thanks alot, doc…

    Something to think about…

    Cheers, and all the best
    Bev, in Canada

    • Kristin
      KristinMarch 17, 2012 at 6:49 pm #

      that’s very interesting about the antibiotics. I’ll have to research that alittle more but she actually has only taken antibiotics once in her life when she had an ear infection maybe around 13 months? I’ll have to let my SIL know about that because she puts her kids on antibiotics at the first sniffle.

  7. AshleyMarch 12, 2012 at 4:39 pm #

    Hi Kristin,

    It breaks my heart to hear about our little one with UC. I have had UC since 2010, and since that time have had 4 flares with one leaving me in the hospital needing 2 blood transfusions. At that point, they started me on a Prednisone taper (it ALWAYS works! Prednisone gets my flare under control) and the idea is that Imuran will keep me healthy longterm. I have had the start of flares even on that.

    I notice that stress and changes like traveling and change of routine impact my susceptibility to flares. I’ve had to learn to self-nurture a bit and check in with myself on what my needs are.

    I do believe that weaning off bread products and sugar helps me feel and remain flareless. I find that a gluten free diet is helpful to my body overall, and is easier for me to adhere to than the SCD Diet.

    Prednisone always works for me. It’s a wonderdrug. Each time I’ve used it, I feel relief almost immediately. I do long tapers. 3 weeks at each 40 mg., 30 mg., 20 mg.

    Warm thoughts to you and your daughter, thank you for sharing.

    • Kristin
      KristinMarch 17, 2012 at 6:52 pm #

      Thanks Ashley. it seems as though the prednisone is working for my daughter as well right now. Hopefully when we take her off she will remain in remission but i am continuing with the SCD Diet mostly. i am keeping her off of milk also for the moment as well as sugar and grains.

  8. Tara RosasMarch 12, 2012 at 6:05 pm #

    Kristin,

    I’m so sorry that your little one is dealing with this. I can’t imagine how heartbreaking and terrifying this must be for you. It will take some time to sort of process things and figure out the way to go. I just want to offer you great encouragement. UC does not have to be a life sentence, especially if you nip things in the bud, I believe that your girl has an excellent chance at recovery. I’m much older (32) but I’ve had complete healing through the GAPS diet. I have been drug-free and medication-free for over a year now and am able to digest normally, even grains! You can read an early version of my story here:

    http://www.ihaveuc.com/im-on-the-gaps-diet-to-treat-crohns-ulcerative-colitis-and-its-working/

    After the dust settles, I would encourage you to look further into the GAPS diet. Yes, it’s difficult, but it works. And wouldn’t you do anything to spare your daughter a lifetime of this? I can attest that the latter is far worse, I’m afraid.

    I would like to give you my contact info. I’m a holistic health counselor and I’d be happy to share my story with you and point you in a good direction should you desire. I’ve seen it all with dealing with UC/Crohn’s and if you’d like to have a conversation and get some free counsel, I’d be happy to do so. You can reach me at: findyourwings@me.com

    Regardless of what you decide, I would like to offer you HOPE. I am seeing people overcome this disease more and more with each passing day. It’s catching on and it’s only going to spread. It’s all about sharing and finding the answers amongst our community. God bless you, your little daughter, and your family.

    • Kristin
      KristinMarch 17, 2012 at 6:59 pm #

      Thank you so much! Your words are giving me encouragement that we will make it through this. On Monday I hit my lowest point when the doc told me we will have to do a blood transfusion if she couldn’t bring her hemoglobin levels back up. Poor thing had already lost 4 pounds ( 8-9 % of her body weight) and she looked so pale and frail. By wed we were back up 3/10 of a point and the blood is staring to taper off. I pray that it continues.

  9. Kathy PrietoMarch 13, 2012 at 3:07 am #

    Yea it stinks when it happens to the little ones. My husband has UC and daughter (now 7) had had gut issues(but not UC) for years. SCD is worth a try- It is healthy and the rest of the family may benefit and even actually like it! Also, probiotic- VSL#3 DS has been very helpful in my family.

    • Kristin
      KristinMarch 17, 2012 at 6:59 pm #

      Thank you.

  10. MeganMarch 19, 2012 at 9:21 am #

    Hi Kristin,
    Your beautiful, smart, and confident daughter will not be lost to this…she will become more beautiful, smarter, more confident, and more than that…wise, resilient, strong, and an inspiration to you and all those around her.
    Although I cannot speak from a mom’s point of view, and I won’t pretend to understand it (my mom is three parts incredibly awesome and supportive of my UC, one part me wishing she would just relax a little bit!) I have been a camp counselor for kids with IBD for the past 7 years, and each summer I am blown away by the strength, confidence, and maturity of the kids that have grown up dealing with this (I was diagnosed at 18).
    There are kids that were diagnosed when they were too young to even remember, that have only known life with IBD, who are able to handle what they have been given with grace and maturity that I have NEVER seen in teenagers before. I have seen teenage boys cry and teenage girls go out of their way to be inclusive of their peers- not cliquey as you would expect. They have found an inner strength and a zest for life that so called “normal” kids don’t find, and a patience and respect for the opportunities they have to enjoy life, and the people they encounter.

    It’s going to be a tough journey with your daughter but I hope that you can try to stay positive, instead of being bitter and resentful and telling yourself that it isn’t supposed to happen to kids this young- because it might not be fair, but the fact is that it does, and there are a lot of hidden blessings along the way. Stay positive and keep reminding your daughter how strong she is, and that she is special, and that she can handle this, and that you love her no matter what.

    Also do your best to educate yourself and find a top-notch GI doc. There are a lot of different theories out there, and it can get overwhelming when you’re hearing a lot of things from a lot of different directions. Take the time to research what is going to be best for you and your daughter, and work with a doc or nutritionist.

    And also remember that you’re not alone, and she’s not alone, and that there is a great, supportive community out there, and that you will get through this, and you’ll come out stronger on the other side!
    Let me know if you ever want to talk and hear things from a daughters POV.

    Thanks!

  11. Kristin
    KristinMarch 22, 2012 at 8:14 am #

    update: my daughter started on the prednisone with great results until we started reducing her dosage. two days into it and she had bloody stool in the morning. I also let her cheat a little on her diet and she also told me she forgot and had a peep at school. (you know those horrible marshmellow things available around Easter time). I think I am going to go full force on the scd diet although i don’t have a yogurt maker yet. I will stick to it as much as possible until i get that. i have a call in to the doc about what to do now but i am feeling very discouraged right now. her energy was just starting to come back with no horrible headaches. she even went to dancing yesterday. i am just so disgusted and angry. please excuse my typing, I am writing through tears at the moment.

  12. amandaApril 5, 2012 at 12:49 pm #

    Hi Kristen,

    I understand what you are going through my 5 yr old son was just diagnosed with UC in February. It has been an ongoing battle of frustrations. He was put on prednisone, but it didn’t work as fast as they had hoped so he was admitted into the hospital for a week, where they put the steroids though his IV. When we left the hospital he was on a low fiber diet, continued on the steroids and was also prescribed sulfersalazine 3 x a day. He had no blood in his stools for 3weeks it was such a relief. This is his last week of the tapering of steroids and now he is having symptoms again! His GI wants to try 6MP, but I don’t know if I am comfortable with that.

  13. MishaelMay 6, 2012 at 10:30 am #

    Hi Everyone!

    I have a 5 yr old son in the hospital right now dealing with colitis. The doctors are not yet sure what kind of colitis it is at the moment but i would love some insight! My son’s symptoms are…

    abdominal pain and bloating
    fevers and diarrhea everyday
    blood in stool

    My condolences to you, your daughter, and your family. It hurts me to know that i can’t help my son while he’s going through this. I also have a few questions. My oldest son had a stomach virus previous to my youngest son getting sick, do you think this has anything to do with it? Also, being that its a digestive issue do you think yogurt or probiotics like acidophilus would help? How is your daughter now? i noticed it’s been awhile since you’ve last posted.

    • Kristin
      KristinMay 9, 2012 at 6:59 am #

      Hi Mishael, I hadn’t looked at this website lately but this morning I saw your post so I’ll give you an update. It is funny you mentioned a stomach virus because my baby boy and 2 nephews (we had been staying at their house the week before) all had a stomach virus prior to her flare up so maybe there is a relation? not sure on that one. My daughter was given prednisone. As she started tapering off the bleeding returned. It was at that moment that i started her on the SCD Diet. The GI Doc told me to stop tapering her off but i hated her being on that medication so I continued with the taper, kept her on the strict diet, and prayed every night through tears. Each bathroom visit after that the blood was less and less until eventually she was off the prednisone and her potty visits were back to normal. she still takes Apriso once a day and the doc wants to keep her on it for at least 6 months. I don’t know of any harmful side effects so I am on board for now. I still practice the SCD Diet with an occasional birthday party cheat here and there. Our life has gotten even busier with this lifestyle change (with 3 small children i didn’t think it could) but we are managing and my daughter is healthy so that is all that matters to me. I have thought of adding a probiotic to her daily regimen. there is one that i have read great things about and I can’t recall the name right now but i know people have posted about it on this site. Good luck with your little boy. I know it is heartbreaking right now but reading everything I could really helped me feel in control of an uncontrollable situation. Take charge of his health, trust you instincts, and accept help when it’s offered. You and your family will get through this and come out stronger on the other side. i’ll try to check back more often if you have any other questions-Kristin

  14. RanziMay 9, 2012 at 5:05 pm #

    Hello am sorry to hear that .. My daughter started getting bloody diarreah at 18 months and had 2 colonoscopies and 1 barium test she 2 now and they think its UC they will do another colonoscopy its really hard but am trying to be positive as much as i can i need her tonlive a normal life no matter what! She is on salfasalazine and i guess its getting better. I found one doctor online that treats patients with natural ways! Hes on twitter dont know if its true or not but i might try what he has. U pay 500 dollars and he will then start!! I hate medications. She was on very healthy organic food and she was breastfed for a year and she took an antibiotic only once before she got sick! We went to washio university and mayo clinic for her treatment and diagnosis! I read so much abt it. And wht i can do is deal with it the best we can and make it easy for her and stay positive!!! Always!! I wish u all the best ur baby girl will still b the most beautiful an the smartest little girl and mine 2 but we have to keep it together for their sake!

  15. RanziMay 9, 2012 at 5:24 pm #

    Its me again. Please share some of the SCD diet recepies with us. I got so many books but i tried some and my daughter doesnt really like it! She used to eat very healthy then when she got sick she started not 2 but i still try! I never thought nit in a million years that my daughter will have such a disease i thought i will always be in control! And that am doing everything right! I know its not my fault but i cant help it and wonder what went wrong! Anyways we were so angry and i used to cry and cry and cry daily until i realized its not helping anyone i need to be back! I need to take charge and iam as much as i can! Am very positive and just praying and hoping for the best and always remember that ur attitude towards it will change alot so i chose positive attitude! And i want my baby to be normal!! Feel normal!! It needs more work but it can be done and thats from reading alot of experiences!
    Please update us and we r all with u! Stay posituve and strong! Ur child can see everything u feel in ur eyes and how u act they r so smart.. So always remember to deal
    With it and go forward!! Do ur best each time so u wobt regret it plus its worth it. And stay positive for her sake. Thats how i do it..

  16. Kristin
    KristinMay 11, 2012 at 3:10 pm #

    Definitely heartbreaking as a mother. You just want to take it all away but like you said we have to stay strong for our little ones. I am a New Orleans girl so I’ll share a couple southern style recipes that we love.

    1 lb package of white beans (camelia brand if possible)
    1 bell pepper
    1 onion
    4-5 stalks of celery
    1 cup diced cooked ham
    2-3 cups chicken broth
    garlic, salt and pepper to taste

    Soak beans in water overnight. Dice onion, bell pepper, celery. Saute veggies in butter and garlic till onions are clear. i cook beans in crockpot but any large stew pot will work. Add 2 cups of chicken broth (homemade) to beans along with veggies, ham, and salt and pepper to taste. Sometimes I add a teaspoon of oregano or basil. I cook on low for 4-6 hours with an occasional stir. You may have to add a little more broth, depending on how long you cook them.

    *Homemade broth: I boil a whole chicken once a week. Cover completely with water and simmer for 2.5-3 hours. Drain broth into resealable containers. Discard chicken skins and bones. Refrigerate all the good meat. i use the broth throughout the week for cooking and will use the chicken for soups, chicken salad, chicken cacciatore, whatever meal plans I have for the week.

    My kids are acting up-I will try to post more recipes later

  17. ChrissyMay 17, 2012 at 7:36 pm #

    I am sorry to hear about your chil’s diagnosis, my 2.5 year old was just diagnosed with ulcerative colitis in march. She had the headaches, joint aches and was lethargic for months, maybe even a year before we nailed down the problem. I tried the elimination diet to try to figure out what was wrong with her before I knew she had uc. Finally, we did all the work ups, blood, stool, colonoscopy, and allergy tests, and that’s when we found the chicken/ meat allergy and the ulcers on her lower intestine. Now we have been doing the scd diet strictly for 3 months, she has been off prednisone for three weeks and is seems to still be healing. She does take sulfasalazine as a preventative. 1 week into the diet, it was like someone gave us a new kid, I cannot recommend it enough. She now can run and laugh and play and doesn’t want to be held constantly. Although it is challenging, ( since I can’t allow her to eat meats, and I still avoid seeds and skins on fruits and veg.) I believe it is what is maintaining her health at this point.

    You may want to ask your ped about the probiotic vsl3, it’s expensive, but I think it helps and for her it’s worth the cost. It has been proven to help those diagnosed with uc. I give her that 2 times per day. As well as a calcium and iron supplements. This is all very new to me and my husband, so I don’t know if what we are doing is always the best or right choice, but I can see that I want to do everything I can to avoid or prevent as much as possible, from using more and more pharmaceuticals to try to treat her.

    Please feel free to contact me if you have any questions, I think our situations are quite similar, and I know it’s a hard thing to wrap your head around.
    Chrissy

    • Kristin
      KristinMay 22, 2012 at 6:01 am #

      thanks chrissy.

      I have been thinking about that probiotic but it is so costly. Our children’s health however is worth every dime right? she is actually in a flare right now triggered by what I think was stress and me letting her cheat on her diet. She had a kindergarten graduation, lots of excitement, big change in daily routine, and I let her have two cupcakes that day and a juice box. if I could take it back I would. I will chalk it up to a learning experience. i have her back on strict SCD and symptoms are a little better. She is going back to the doc tomorrow and she will probably want her back on the prednisone. I am going to ask her about the probiotic but she doesn’t even think diet plays a role at all so i am not confident she will have much a response about the probiotic. Doesn’t mater though. I have learned to trust my own gut and not the doctor’s.

  18. ritiMay 22, 2012 at 4:14 pm #

    i have a 4 year old who’ s been diagnosed because i think they have no other choice he has no other symptoms han the bloody diarreah, he’s had 5 colonoscopies and the firts 4 showed no chronicitu and the last one for one pathologist has the changes they were looking for and for another one hay the changes fir allergic colitis. this has been going on for teo years now because i has episodes ( i dont like the word flare since i refuse to take diagnosis yet) can anyone tell me of the very best place to take him to get another opinion because he’ s full of energy and runs around all day no pain, only goes to the bathroom and leaves me ” surprises” is there a dr in the blog or someone who has a clue!!!! I ve cried so much reading your posts and been doing so for two years now…. please some insight than you. we are from guatemala and here its very rare

  19. ChrissyMay 23, 2012 at 6:42 am #

    Sorry to hear your daughter is not feeling well again, dont feel guilty about cheating, now you know what works for her and what doesn’t.

    My doctor doesn’t think diet plays a role either, I beg to differ as I have seen first hand how it has helped my child heal. I wouldn’t give her the vsl3 while on a flare, but when she starts feeling better, I would try it if you can swing the extra cost. There are studies on the Internet that show it’s effectiveness in children with uc. Hopefully going back on the diet will make your daughters flare short lived, I wish a fast recovery to her.

    • Kristin
      KristinMay 29, 2012 at 6:17 pm #

      Thanks Chrissy. Hearing other’s stories definitely give me hope and reassurance that we are doing the right things for our children. I am happy to report that my daughter is doing alot better, she is down to just one BM a day, no visible blood, and firmer stool every day. i am starting to reduce the prednisone starting tomorrow and am waiting on the vsl #3 to arrive. Should be any day now. I also have an appointment set for this friday with the nutritionist that “cured” my friend’s UC. He will probably recommend a bunch of supplements but I am totally fine with that. I am ready for this nightmare to be over. I would walk to the ends of the Earth for my baby girl as I know anyone with a sick child would do. We will beat this because we HAVE to. Faith that we can get through this and hope that it doesn’t show its face again once we do is getting us through each day. Keep me updated and one other question. You mentioned joint pain which mine is also complaining about this time around. Any knowledge you could share would be appreciated. -K

      • DeboraDecember 20, 2012 at 10:57 am #

        Dear Kristin!

        I am so happy to read about your success! Please, write me your email, I would like to write our story, actually completely identical.:) Good luck to continue with SCD and have a nice holidays and happy new year! Debora

  20. ChrissyMay 30, 2012 at 11:10 am #

    Kristin,
    So glad to hear her health is returning! As for the joint pain, I notice it when she gets tired, or in the heat,I am told by my doctor that it accompanies a flare, and it will come and go. I don’t know if there is too much we can do for the joint pain, I think antiinflamitories help, but for my daughter, the pain hasn’t been unbearable enough that I give her anything for it, usually, I just hold her for a bit and she feels better. I will say as you taper the prednisone and eventually stop, with my daughter, it took a few weeks to get back to normal, she has been off it now for 4 weeks, and she is good, but just this week, seems to be finally adjusting to being off of it. I am curious to hear what your friends nutritionist recommends, my daughters doctor has already told me that she plans to keep her on meds for life, and i dont know how you can say that to a three year old that has made a 180 turnaround in three months. That said, I am currently seeking a source that can give insight into a more natural way of treating sans pharmaceuticals. However, I live in a pretty rural part of Ohio that doesn’t have a vast amount of resources. Have you heard anything about pure aloe Vera juice, a friend recommended and was thinking of trying it out. Best of luck to your daughter hoping she does get better and stay that way.
    C

  21. RachelJune 14, 2012 at 7:26 pm #

    Hi,
    My daughter was diagnosed with UC last November at the age of 4. To say it was a shock is an understatement and all that you’ve been going through sounds very familiar. I wanted to first respond to Chrissy about the aloe. My daughter is on it now for about 2 weeks (Dr says aloe and probiotics are the only alternative means that he’s seen help some folks). My daughter was on prednisone right after dx with sulfsalazine, she did the taper and blood was on/off again for a while (blood on weekends and clear up over the week) then she had no blood for about a month and a half (on sulfa)and now it seems for the past month and a half she’s been having on/off again, more on than off :(. Aloe doesn’t seem to be working at this time. I do want to put her on serious probiotics. She hates the powder one (culturelle- Dr recommended) so I want to try something else. Could someone tell me more about vsl #3? cost? how often? What form? Thanks

    • AdamJune 14, 2012 at 7:44 pm #

      Hi Rachel,

      What might be a great idea for you is to go and read some of the reviews and ideas from the others who take probiotics.

      In the “Surveys” section of the website which you can find towards the top, once you click on that, there is a survey that I conducted with 129 other UC’ers specifically about probiotics. There’s quite a bit of talk on differnet ones, and lots of talk on VSL#3 wihch might help you out to get some ideas on what to do. I hope this helps you and your daughter.

      Regards,
      Adam

    • shelly in maineJune 15, 2012 at 4:44 am #

      Hi Rachel,
      The secret to the powder probiotics is to “hide” them in a smoothie…it is also a great way to get tons of nutrition in an easier to digest form. Base your ingredients on symptoms and needs and get a great blender! :-)
      Best of luck and health, Shelly

  22. ChristinaDecember 12, 2013 at 3:05 pm #

    Hi I am in the same boat. My daughter was dig owed at 4 1/2 she is now 6 . The turning point for us was when we put her on Vsl #3. The pills.we have discovered may of her trigger foods, eggs blueberries, pasta .all odd foods she is down to 1 bm per day from 8 no blood. I also attribute much of her healing to the power of the rosary which is prayed for her weekly…..god bless u and your family

Leave a Reply