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Young children with Crohn's?

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Crohn's Disease
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Posted 2/7/2008 4:55 AM (GMT 0)
My 2 year old daughter was recently diagnosed with Crohn's. She was in the children's hospital for 2 weeks. She is currently on prednisone (weaning off it now), 6MP and remicade. I know it's very rare for a child this young to be diagnosed. Has anyone else gone through this?
Posted 2/7/2008 5:40 AM (GMT 0)

Sorry to hear about your dear Daughter's diagnosis.  Thanks to better and earlier diagnostics it really is not uncommon for someone your Daughter's age and even younger to be diagnosed.

There are quite a few Parents on the Parents of IBDers Support Board that have toddlers with IBD.  The link for that Board is:  http://www.dragonpack.com/ibdsupport/parents/

Posted 2/7/2008 10:54 AM (GMT 0)
I am also sorry to hear about your daughters diagnosis. My prayers will be with you and your daughter. I also agree with Mary there are alot of young kids diagnosed with Crohn's.
Posted 2/7/2008 6:42 PM (GMT 0)

I am so sorry you daughter has to go through this disease and you have my prayers.  The youngest I have read about was 20 months when she was finally diagnosed.
The site provided by Mary S is a great idea.
Gentle hugs to all of you.

Kitt

Posted 2/7/2008 7:10 PM (GMT 0)
How horrible for your daughter. I so hope she gets well soon.

If you need some info about any natural ways that also help with crohn's, you'll find so many people here can offer some great and worthwhile advice.

I wish you and your daughter the very best.
Posted 2/8/2008 12:15 PM (GMT 0)
I'm so sorry this is happening to your little one...and to you. My prayers are with you and my heart goes out to you. Keep us posted ok. we will all be thinking and praying for her and you and be wondering how she is doing.
Mary
Posted 2/8/2008 1:51 PM (GMT 0)

So sorry about your little one. I hope she does well.Hang in there.

Sending hugs :-)

Posted 2/8/2008 7:27 PM (GMT 0)
Sorry to hear about your daughter. I was 8 when I was diagnosed. I began with constipation issies after I had the chicken pox...for me that semed to be the start. I was 5 when that occured hopefully she will be able to be well on medicine for a long time if not forever. It took me 20 years before I needed surgery for CD but I made up for time and have had 4 surgeries in 1 year for this DD.
Posted 2/8/2008 10:33 PM (GMT 0)
I am so sorry to hear about your daughter, the youngest that i know personally is 11 and I thought that was to young wow you must have a geat Dr and clinic. The only positive thing i can think to tell you is there is so much research today on this and awareness that there is some hope, my prayers are with you and your daughter.
Posted 2/8/2008 11:34 PM (GMT 0)
   We have a mom in our support group who's son was diagnosed at 18 months....My son was diagnosed at 7.

  When did your daughter start Remicade?  Also how often does she have her treatments.  The mom in our support group was told they couldn't give her son Remicade due to his age, but you are the 2nd person I know of that their child does recieve it.  My son has been on Remicade for 2 years now and we couldn't be happier.  He is living a "normal,pain-free" life a 9 year old should.

 Samsmom

Posted 2/9/2008 12:14 AM (GMT 0)
Thank you all for your replies! Thank you for that site too! My daughter is 30 months old. She was diagnosed 3 weeks ago and has gotten one Remicade infusion in the hospital. Her second infusion is this week (2 weeks from the first dose). She gets another dose 4 weeks after that, then 6 weeks after that. We're not sure how often it will be after that. We go to Texas Children's Hospital and see doctors that are professors from Baylor. They are awesome!
Posted 2/9/2008 12:56 AM (GMT 0)
Hey I am sorry to hear about your daughters diagnosis. I work at a camp for chronically ill kids in the summer, and two of our sessions are for crohns and ulcerative colitis. I have had many kids diagnosed at a very young age, and I actually had a camper who had her colon taken out when she was 2, and had an ostomy at thaty age. It will be rough, but it sounds like she is well taken care of. It seems odd, but your daughter and I are on the same meds...but I have a few years on her. How much 6-mp and remicade is she on? Best of luck, and if you have any questions don't hesitate to ask!
Posted 2/9/2008 2:14 AM (GMT 0)
Welcome,We are glade to have you.I am so sorry that your daughter is having to go through this and I know how hard it is to deal with this disease but you have come to the right place.I would like to tell you this and it may be something that you may want to look in to.The ccfa have surpport groups for adults as well for children with this disease.Where I live we have a support group that meets once a month and it is so nice to be around others that are dealing with the same issues.
Posted 2/13/2008 1:45 AM (GMT 0)
Thank you! I will definately look into joining the ccfa as soon as possible. I would love to meet other parents of children with Crohn's and get their perspective on things like potty training, etc.

My daughter is on 15 mg 6MP, 15 mg Prednisone (tapering off slowly, was at 20 mg), Prevacid, zinc and iron every day. I'm not sure the dosage on her Remicaid because she had that by IV in the hospital. I'll check how much she is getting when she gets her second dose this Thursday. She is only 23 lbs.

Post Edited (picklechic) : 2/13/2008 2:40:09 PM (GMT-7)

Posted 2/13/2008 10:36 AM (GMT 0)
Hi, I am hoping your daughter does good with her second infusion of remicade. I have been on Remicade for almost 5 years and I am doing very good with it.
Posted 2/13/2008 8:30 PM (GMT 0)
I'm so sorry to hear about your daughter.  My daughter was 18 months when her symptoms started appearing.  Although not officially diagnosed with either Chrons or UC, she has inflammation throughout her colon and a little in her small bowel (although the small bowel follow through indicated that she had no evidence of Chrons).  She will be 3 in March and has been on Prednisone (20 mg and weaned off), Asacol, Colazal, VSL, and various antibiotics.  Nothing seems to work in kicking it.  Her doctor wants to start her on 6 MP, but I want her to get another colonoscopy to check how the disease has progressed or not.  It's so hard to be a mom to a toddler with this.  It's hard to watch them go to the bathroom so many times.  The positive thing is that they don't really know the difference, they get used to it.  My daughter was successful at potty training and hasn't had an accident in over 4 months!  I just make sure we are always near a bathroom.  If you need to talk some more, I'll keep checking this post. Good luck with your daughter.  Maybe you have some tips that has worked for you!


Post Edited (Becca-Boo) : 2/13/2008 1:40:44 PM (GMT-7)

Posted 2/13/2008 9:51 PM (GMT 0)
Hi Becca! It is nice to hear from another mom of a toddler dealing with this! My daughter had bloody diapers for about 6 months and our pediatrician didn't know what to think. We finally out of desperation went to the ER and our daughter had to go through a bunch of tests, blood transfusions and a 2 week hospital stay as they discovered it was Crohn's and tried to stop the bleeding. With her being our first, we didn't have any idea that loose, very frequent stools was not still normal in a 2 year old. She was on IV steroids and 6 MP in the hospital and they gave it 10 days to stop the bleeding. It never did so they finally started her on Remicade via her IV and it literally worked over night. It was a miracle drug for us. I know it has some scary possible side affects so we didn't put her on it lightly, but it really was the only thing to stop her bleeding. She has only had one dose so far, she gets her second tomorrow, but so far so good. She only has 1-2 stools a day and they are definately more formed, no blood at all. We hadn't started potty training before this, but I think we'll start in the next few months. Do you have any hints or tips? I'm not really sure where to start. That's great about the no accidents! My daughter is going to be going to preschool in the fall and I'm worried how Crohn's may affect it, especialy if she's having a flare. I would love any advice you have! Have you met many other parents of kids with IBD?
Posted 2/13/2008 10:10 PM (GMT 0)
Wow, it sounds like you had quite the ordeal with diagnosing your daughter. Like you, my daughter is also my first child and I didn't know that loose stools weren't normal. Then last november, she started bleeding a lot and having loose stools 5-6 times a day and my pediatrician (awesome MD) said to admit her to the hospital since we would have had to wait for 3 months to see a pediatric GI. They did all the testing and found that there was inflammation in her colon throughout and I think in the ileum of her small bowel. My pediatric GI has not officially diagnosed her because she says she doesn't want to put a label on her and she doesn't want insurances to be stinkers about it either. She just said, "let's call it colitis." I'm ok with that. At the beginning of March she'll have her second colonoscopy and then I'm going to sit down and chat with the doctor about possible treatment options. We're going to try 6 MP I think, but I'm so hesitant when we start any meds because she's so young. Do you find that you are so worried about the future? What her quality of life is going to be like? I'm so glad I found you because I've been feeling like I'm the only mom out there with a 2 year old that has this problem. I'm so glad that Remicade is working for your daughter. I'm hoping that I won't have to get to that point, but I'm glad to know that there is someone else in this situation.
Posted 2/13/2008 10:35 PM (GMT 0)
We had a long wait to get into the GI doctor too. We made an appointment, but ultimately we decided we couldn't wait that long so we went to ER at the children's hospital. You are lucky you had a good pediatrician. Our pediatrician at first thought she had fissures causing the bleeding and then they just didn't know what to think. We pretty much went out on our own and made an appt. with the GI and then went to te ER on our own gut instinct. We are going to be finding a new pediatrician too. It is so funny how similar our stories are. My daughter has always had 5-6 loose, stools a day. But in October, she started having the blood. It came and went away a few times, but in December and January it got really bad with large quantities of blood and we knew we had to do something. I called one GI doctor and tried to get a sooner appointment and I talked to a nurse who told us it was not an emergency and that it sounded like it may be a colon polyp, but there was no way they could get us in sooner. So that's why we went to the ER. We were at an awesome children's hospital and saw a large team of doctors that discussed and the best treatment for our daughter. We really liked having so many different opinions and it made us feel secure that we were getting the best advice on how to treat her. I'm not worried about the meds because I trust our doctors opinions and they see and deal with this every day. When she was first diagnosed, we really were very worried about her future and really upset that this was something she'll be dealing and struggling with for the rest of her life. But right now while, she is having normal poops and no other symptoms it's easy for us to be optimistic and to hope that she'll be one of the lucky ones to have a lighter case of it. We were told that because she got it so young that she will probably have a wotrse case of it and may run out of treatment options after awhile. But we also believe that there WILL be a cure for Crohn's in her lifetime, that there are so many new treatments coming along and this field is growing by leaps and bounds. And I'm an optimistic person by nature, so right now while she's feeling healthy and normal we're enjoying that and hopeful that she'll stay like this for a long while.

I definately know what you mean about being glad to talk to another parent in this situation. My friends and other parents I talk to do not understand what we're going through.
Posted 2/14/2008 12:27 AM (GMT 0)
Kimberly,

   You have a great outlook for your daughter it reminds me of my self!  I too think they will have a cure in their lifetime for this disease.  When my son was diagnosed 2 years ago at the age of 7, I was so pissed off.  Why him?  It was like a death, going through all the emotions.  It really sucks because they are so young and they really have no clue what is going on and what everything means.  I am so happy to hear your daughter is responding to the Remicade.  I know alot of people are afraid of what could happen while on Remicade, but look at the warnings they post for aspirin.  I do not regret putting my son on Remicade.  It has given his life back!

  I also have a 21/2 year old daughter who just finally caught on to the potty this week!  I have been trying now for 4 months with her running around with no bottoms on her, cleaning up the carpet or couch sad if she had an accident.  But it clicked that she needed to use the potty instead of the floor.  WHen she goes we reward her with a star and a treat!  She is really proud of herself when it happens.

 Best of luck with your daughter and I hope all goes well with her 2nd treatment tomorrow.

Debbie

Posted 2/14/2008 1:44 AM (GMT 0)
Picklechic- I am so sorry about your daughter's dx. However, I'm glad they found it! I'm praying you'll find the right answers for her. I read one of your earlier post and I understand that your daughter also has Turner's syndrom. I am a moderate to severe Crohn's patient and I have a daughter that is 29 years old that has Turner's. I am here often if you need to talk or ask questions.
Posted 2/14/2008 1:49 AM (GMT 0)
Broomhilda- Thank you! I answered you in that post to me below!

Debbie- I felt that same way. Just mad that she had yet another thing that she'll have to deal with in her life, like her life won't be hard enough with her Turner's Syndrome. But I am getting over that because she's doing so well so far. Thank you for your advice and commiseration!
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