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Hi Parents,

My 19 month old son was diagnosed with UC two months ago after a colonoscopy, endoscopy and other tests. He went on 10 ml x day of Prednisone immediately and it helped right away.  I also started giving him Pentasa mixed in his food.  He is weaning off of the Prednisone and not doing well.  He's not absorbing the Pentasa and hasn't been since he started.  It seems like all of it is coming out in his stools.  He's having 5-7 loose/ watery bowel movements a day. Some of them are just mucous.  The doctor wants me to think about other drug options like 6-MP, Remicade, and Humira.  He will need to do another colonoscopy before he prescribes one of these drugs. I'm concerned about the harmful side effects of these drugs and giving them to such a young child.  Is there anyone out there who has a child as young as mine with UC and do you have any advice?  Or is there anyone who has had success with any of these drugs given to children?  Do the pros outweigh the cons?  I'm so sad that my son has to deal with this for the rest of his life. He's SO young.  I hope they find a cure some day!

 Reply posted for saddenmom14.

Hi Sara:

 The doctors decided flagyl 2 ml twice a day as opposed to the Immuran. So I started giving it to him on Sat evening.  So we'll see.   We're still doing Prednisone 2.5 ml daily. My son has to stand to make a BM. Does yours do that? Just curious. I would like to talk to you and compare our stories. Who knows together we might come up with a soloution to this nightmare. It helps when someone is going through the same thing your going through. Look forward to talking with you.

 Reply posted for saddenmom14.

Hello,

Thank you so much for reaching out. I might give you a call sometime. My son is on Prednisolone right now too. He's incredibly emotional, hungry, and of course he has swelling too while he's on it. We're trying to get the Pentasa to work for him one more time. This is his second course with the Prednisolone and Pentasa. I'm about to start weaning him on Saturday. Right now he's on 9ml of Prednisolone a day which is about 27mg (a lot for a 30 pound child). I'm home with him all day and I can tell you there are some tough moments while he's on the Prednisolone. Unfortunately, I can already see the Pentasa isn't going to work for him this time because the little beads are all coming out in his stool again. We tried a liquid sulfasalazine, but he broke out in hives. He was allergic to it.  I'm trying to weigh the pros and cons of each of the other medication options: 6MP/ Imuran, Remicade, and Humira. I'm afraid of the risks that all of them could cause. And the 6MP doesn't look good because it could take 3 months to work. I'm still not sure what to put him on. Of course before he gets any of these meds he will need to have another colonoscopy. Those aren't fun either, I'm sure you know. I just wish he was a normal healthy toddler or at least that his UC was under control.

I hope the Imuran works for your son and fast! Let me know how everything goes. I'll be waiting to hear.

 Reply posted for Sarah2008.

Hi Sara

 My son was first diagnosed at 16mths, but has had it since birth. He has never had a form stool. My son would wake up between 3am-6am, and stand alone the side of the bed to have a BM. What a heart wrenching site to see a baby go through! Which is one of the issues that got my attention, then of cousrse the bloody diarreah! It is 8mths later and we still have not had a form stool. The bleeding did stop. The last six month he has been taking Prednislone, which gave him a moon face. The swelling is decreaseing, as we bring the dosage down.The 5 ASA's did not work for him. But, now we are having a flare and it looks like we will be trying the Immurann, lets see if it works.

It is really good to find someone who has a child the same age as mind that I can talk to and can understand what I am going through. Feel free to call me I'm in Chicago my #312-437-1401. Look forward to talking with you.

 Reply posted for Sarah2008.

Sarah you may want to check with the doctor/pharmacist as Lizzies mom has a good point. The Pentasa and Asacol and the like are designed so the capsules dissolve according to the pH in different parts of the bowel. If not given in that way the medication may not be dissolving and just passing through the system, that's why you're not supposed to chew or dissolve the capsules.

 Reply posted for Sarah2008.

My daughter was very young when diagnosed w/CD.   She was put on Sulfasalazine and is still taking it (6 yrs later).   The pharmacy mixes the compound (flavors it in cherry syrup).  I'm not sure if your son's condition is beyond this meds scope or not, may be worth checking into. 

As a parent, I do know how frustrating it can be.  Stay the course, I can tell you the pieces eventually fall into place.   There is a light at the end of the tunnel.

Lizzies Mom

 Reply posted for running4cure.

Thank you for responding. I'm so sorry that your daughter has to endure both of those diseases. I do have another question. It's about the sulfasalazine.  What form is the drug in (liquid, capsules, pills) and what is the brand name or is it just sulfasalazine?  Also has she always had success with it?  I'm giving my son Pentasa in the form of capsules full of little beads. I dump the beads of one capsule (250 mg) into food three times a day.  It seems like he's not breaking down any of the beads because I see many of them in his bowel movements every day.  And of course if his body is not absorbing the Pentasa then it isn't doing it's job.  I wish that the Pentasa worked for him because it seems like the safest drug that he could be on.  Anyway, thanks for replying and I hope that your daughter stays in remission for a long time.

 Reply posted for Sarah2008.

I understand the questions you are having right now.  My daughter was finally diagnosed at the age of two, but had symptoms since probably 10 months old.  We went through all the allergy food removals while symptoms came & went (bloody mucas stools).  Finally, when she could communicate by putting hands on her back and being very fatigued we ended up going to a children's hospital to get answers.  She was dignosed with UC and autoimmune hepatitis.  She started on the prednisone and azthioprine.  Two week before ending the prednisone she started to bleed again.  The doctor added sulfasalzine 3x daily and along with the azathioprine we have not had anymore full blown episodes.  She has not had any side effects.  She still get very fatigued.  It's still hard because she is young and may not know or be able to explain exactly how she feels.  We have moved to a new area and the Walgreen's here does compounds thru the night pharmacist.  It's so much easier then when you have to use a small compounding pharmacy and they don't take insurance!  Ask anything you like.  Hope your child is doing better.