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3 year old with UC

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Ulcerative Colitis
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Posted 8/25/2009 11:13 AM (GMT 0)
Hello I'm new to this site,
My dd was diagnosed with UC in June, she has gone through so much. It just seems like it is NEVER going to get easier.
I'm looking for other parents that have gone through this with a young child. I'm so afraid she is never going to find the right medicine that will get her into remission.
Her GI has cut the pred. to only 3/4 tsp. once a day and cortifoam at night. We are trying to find something that will replace the pred. completely so we can continue to wean her off of it. However she was allergic to the sulfasalazine and now she's on Pentasa but I think her allergic symptoms are coming back.
My GI said the next step is the Imuran. I'm so afraid to start her on that b/c I read that it lowers your immune system completely. My concern is that she is supposed to start Nursery school in Sept. She is looking forward to it too..and I'm just not sure if it is wise to put her in school right now.
Any advice from other mothers that experienced this with their young child?
Posted 8/25/2009 1:18 PM (GMT 0)
     My heart goes out to you and your daughter.  I'm a senior with ulcerative proctitis and wasn't diagnosed until I was 52 yrs old.  I actually thought I was going to cry reading your post.  Are you taking your daughter to a pediatric GI doctor or regular GI?   My doctor will not treat youngsters he refers them to pediatric GI's.

     I have been on 6MP for about seven years.  For the past two weeks my doctor took me off the drug because it lowered my white count to 1.6.  The only advice I could possibly offer is to weigh all your options and do a LOT of research into whatever meds are offered.  Right now with that Swine Flu epidemic around the corner, I would be super cautious. 

     Good luck to you and your daughter.  I will keep her in my prayers.

Posted 8/25/2009 1:39 PM (GMT 0)
Thank you for all your well wishes. I am bringing my dd to a pediatric GI. He is very good and I don't have any complaints with him or the hospital he is affiliated with. I am extremely concerned about sending her to school because of the swine flu epidemic. I know it's only nursery school and I shouldn't be stressing it but I've been preparing her for school for the past 6 months. She is so excited about it, that it breaks my heart to tell her she can't go. Especially because her friends are going.
I read all of these stories on this board and it scares me to think that this is just the beginning.

I feel for everyone that has been suffering with this illness for months/years.
Posted 8/25/2009 2:09 PM (GMT 0)
Welcome to HealingWell. My heart goes out to you and your daughter.

I can tell you that I was on Imuran for several years, and didn't experience any increase in infections. Often it just brings our over-active immune systems down to a more normal level.

I can certainly understand your need to speak with other parents. In fact, there is a group on the internet for this purpose. It is a support group for parents of children with IBD (UC and Crohn's.) I understand it may take a few days to get your application approved, so be patient. Here is the link:


http://www.dragonpack.com/ibdsupport/parents/

Posted 8/25/2009 6:27 PM (GMT 0)

Oh my God! What's wrong with this stupid disease??? Why it can't leave children along! Author, I wish you to be strong! I was diagnosed at 30, at least I had normal life before that. I just don't understand why young people and children have to go through it. Sorry, I'm just mad when I hear about that.  shakehead  I wish your daughter all the best and be in remission for most of her life!!!!!

Posted 8/25/2009 7:06 PM (GMT 0)
{{{katiesmommy}}} I second Judy's recommendation to come over to dragonpack.com!! There are quite a few the age of your little one there. It can take a week or so to get registered, so hang in there!

Don't give up trying the different meds. I will admit, it is very scary thinking of putting your kids on drugs like Imuran - both my kids are on this type drug. Your doctor will watch your child very carefully to prevent the immune system from falling too low. We have had to tweak the doses for this reason, but neither child has caught any more infections than their peer. Actually stay healthier as I have them so conditioned to keep their hands clean and off their face - of course they are older, but start early.

Your little one is likely going to get sick more often just from being in a school environment for the first time - I hated those days!!

My heart goes out to you for having one so young with this DD. My daughter started showing signs when she was just 4 months old, but was mild through the early years. Finally dx at age 8. My son also had symtoms from like preschool, but not bad enough to figure it out until he was 10.

You can email my from the link under my screen name if you want to talk more.
Posted 8/25/2009 7:33 PM (GMT 0)
I agree that the nursery school in and of itself would make her sicker. I'm not so young, but personally I haven't had any increase in infections or colds. If she goes on the Imuran maybe you should give her a Flintstones vitamin or something with vitamin C. I find it helps. I don't know when you can start giving little kids that stuff but you probably would know.
Posted 8/25/2009 7:55 PM (GMT 0)
I want to thank everyone..this has helped me a lot. I am definitely going to register on that dragonpack website. thanks again for sending me the link.
Posted 8/26/2009 3:02 AM (GMT 0)

Hi

My heart goes out to you as well.  I had severe pan colitis and had to have surgery last year after a dangerous drop in white blood cells and neutrophils with imuran and uncontrollable flare.  My only advice is a flu may not be a flu as I thought I had and please see the importance of monthly blood tests to test immune system.  Mine was fine for almost nine months and I thought there was no need to keep it up.  When my colitis condition became so bad my body became infected and I had no white blood cells to fight.  I have a three year old as well and can't imagine your pain.  I had a heat bag on my stomach nightly maybe she would benefit.  Best of luck to you and your sweet little girl.

Posted 8/26/2009 3:38 AM (GMT 0)
Hi Katiesmommy:

Your post gave me flashbacks of my early days.  My dd was diagnosed with pan-colitis at age 5 (now 8).  Dragonpack is a wonderful site, but it can scare you.  So please understand that a lot of people on the message boards are some very tough cases.

My daughter was put on Pentasa (now on Asacol) and did/is doing well.  I also started her on probiotics and extra calcium (pred can lower your supply).  I know your pain and I'm sorry that we have one more little one with this awful disease.  My name is "ithurtsmom" because that is all daughter would say while going to the bathroom 15x's a day. 

Posted 8/27/2009 3:21 AM (GMT 0)

 Hi Katiesmommy:

 

       Your post also brought back many memories for me. My sweet daughter was diagnosed with UC at the tender age of 15months.  Her poor colon was so inflamed that they wanted to do surgery on her. PLEASE read everything you can about ulcerative colitis. LOOK at every possible reason that your daughter may of gotten sick. She is three years old. There has to be a reason.

           I have been watching dragonpack and healingwell for over seven  years now. I have learned alot. I have seen people that have managed the disease well with probiotics , antibiotics, medicines that control the inflammation. I have also read stories of how their UC started after swimming in a lake, or from food poisoning.  I believe that my daughter  suffered for YEARS..... with a parasite or bacterial infection.

   Please read Haileys letter. I have the link posted on my signature.

 My daughter was VERY VERY VERY sick. Her body was literally breaking down to nothing. It brings tears to my eyes still to think about everything we went through with Hailey. The lump comes back to my throat.

   I spent endless nights on the web and endless trips to all the best doctors in OHIO. AND ONLY until after she became well with an antibiotic shot  that is when the doctors admitted to me that THEY KNOW that this disease  can be caused by parasites or bacterial infection. They admitted that they "DO WHAT WORKS, they control the inflammation.

 I agree that Dragonpack can scare you, and I pray for all of the children and their families on Dragonpack.com. 

Ithurtsmom said it exactly.....their are some very tough cases.  This disease is VERY difficult. It is the imbalance of the bacteria of the colon. It is the way the immune system reacts.  They say 70% of our immune system is in our colon. When I heard that I took Hailey to an immunoligist. Something to think about. Please read my story. It is long I know. But I really could not tell it any other way.

 I want you to email me if you need to talk. It is a sad and lonely time to go through. I want you to know that their are moms and dads out there that are here for you.

Posted 8/27/2009 3:30 AM (GMT 0)
bless that poor baby i am so sorry, and i will keep you in my prayers.
On the immuran, when i took it i actually got sick less than i do now, i think because i was more catious about washing my hands and such.
Extra vitamin C is definetly a good idea. And talk to her teachers they are very good about helping and understanding things like that.
Posted 8/27/2009 10:59 AM (GMT 0)
to Hailey's letter: I actually talked to my doctor yesterday about Hailey's case. I asked him about the possibility of it being a parasite or bacteria in her system. He did not agree with that at all..but he is sending in more stool samples to be checked for possible parasites. I am praying it is something they missed before. We went away to Disney world back in June and two days later my dd comes down with this. The bleeding started immediately. It came and went, here and there for about 3 weeks. Then one morning all I seen in the toilet bowl was blood, lots and lots of blood. From there it got worse. My nieces that we went away with both came back from vacation with a stomach bug, so I thought maybe that had something to do with it.
She seemed to be doing so well 2 weeks ago. Going once a day hardly any blood and no more pain. She tried Sulfasalazine but was allergic. Then we tried Pentasa, but her rash seemed to get more severe and her colitis symptoms got much worse. She is now going 6 x a day, having a lot of pain and a lot of blood. We thought it was the Pentasa, but her rash came back last night. She also had the worst night ever. She didn't sleep at all, instead she was up every 20 min. running to the bathroom and screaming in pain. My dh and I think it wasn't the Pentasa but the yogurt we were mixing it with. Since we stopped the pentasa but she was still eating the yogurt.
I am calling my GI today to see what he suggests. I want to try the Pentasa one more time since I am pretty afraid of the Imuran. I also want her off the pred. but my GI will not lower the dose anymore until we find something else to replace it.

I am glad that many of you on the Imuran seem to be getting less sick. That def. puts my at ease with trying it.
This site is def. a lifesaver since nobody I know really understands this. My own family keeps asking me...when is it just going to go away.??? It is very frustrating.
thank you again to everyone you has responded with such kind words.
Posted 8/27/2009 5:40 PM (GMT 0)
Katiesmommy:

I'm so sorry to hear about your daughter. My daughter was diagnosed at 4 with the bloody diarrhea that came on suddenly too. I thought for sure (and still do) think it had to do with some type of bacteria and/or antibiotic use. We had gone bowling that day, and you know how germ infested bowling alleys are and she sucked her thumb back then too. That night she started with bloody diarrhea and it just got worse from there. I thought for sure it was food poisoning (we ate lunch there ) or something she picked up there, but stool samples were negative. Finally, after she was going 10 to 15 times a day they did a colonoscopy and they diagnosed UC. She was on Prednisone for about 6 months and switched to Sulfasalzine. A year later she came down with C-Diff because she went on an antibiotic. After a round of Flagyl, she was fine. I started giving her the VSL#3 around this time too. She stayed on the Sulf. for a little while, but occasionally she would miss a dose here and there and nothing would happen, so I would skip a day to see what the effects would be and when the diarrhea never came back I eventually stopped ( I told my GI what I was doing) giving her the medicine and she has been fine for the past 6 years. But, whenever she would go on an antibiotic for anything during the past 6 years, she would get really bad joint pain that would last several days. Unfortunately, this past May she was on Omnicef for an ear infection and has terrible joint pain that migrates from joint to joint ever since. Rheumotologist said it was UC related so we had a colonoscopy done. The first thing he said was to get a C-Diff test done because the inflammation he saw was patchy throughout her colon ( which is also indicative of Crohn's). Upper Endoscopy and Upper GI with small bowel follow thru did not show Crohns. Two C-Diff tests were negative but I still think it could be C-Diff because there are a lot of false negatives. The only thing is, she does not have any diarrhea which is the major symptom of C-Diff. She had a couple of loose stools before the colonoscopy, but none since. She was on Asacol but it is not helping her Arthritis, so we are going to switch her to the Sulfasalzine since it is used for Arthritis too. I would like to try a round of Flagyl just in case it is C-Diff (GI said she could do it) but I am scared we might be opening a can of worms). I learned recently that Omnicef use has a high risk for C-Diff infection. Wish I had known that before. Ugh! It's very frustrating. Another thing is, I looked back at all of the stool sample results from when she was first diagnosed and they never tested her for C-Diff (My new GI said this is the first thing he tests for when he has a new patient). You may want to have them test for this especially if she has been on an antibiotic recently. My daughter wasn't on an antibiotic at the time of diagnosis but was on an antibiotic at least once a month for her first 2 years of life for chronic ear infections. When she was 2 she had a swollen lymph node that they finally determined after a week in the hospital, being pumped with IV antibiotics, was a reactive lymph node to some type of bacteria that they could not figure out. By the time they removed the lymph node surgically, they couldn't determine what the bacteria was because she had so many antibiotics in her system. I think my daughter's history with antibiotic use may have something to do with all of this. Good luck with your daughter, I hope they find something in her stool. I know what you mean about no one understanding this. I feel like my mom is the only one who understands because she is a nurse. No one knows what UC is or C-Diff for that matter, and especially does not understand how my daughter's joint pain can be related to any of this.
Posted 8/28/2009 6:20 PM (GMT 0)
Hi there,

My son was diagnosed with UC at 2 1/2 years old and he just turned 15 on Saturday.    He has been on Pentasa and Imuran for  over 8 years now.   He has been somewhat under control although he has a flare-up at least once per year.   He was flare-up free for the last 1 1/2 but unfortunately had to be admitted yesterday.  We have been dealing with a flare-up for the past 15 days.  He has lost over 10 pounds and was on antibiotics for 15 days but unfortunately hasn't improved much so we had to have him admitted.  

This disease is an emotional roller coaster he's had real good days where you think that he is actually cured because he is doing so well for long periods of time and then suddenly the flare-up comes on unexpectedly.  You will learn to depict when you daughter is about to get a flare-up and usually be able to control it with enemas and medication. 

She will be okay...  this too will pass.   Good luck to you and god bless you and your family.

 

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