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My daughter is tapering off Prednisone and I am trying to get her on her maintenance meds- We are trying Sulfasalazine because it comes in a liquid- she is having diarrhea and tummy aches from it- only been on it for 2 days and not even the full dose yet...

I feel trapped between a rock and hard place- they don't really have alot of medication options for children that are not pills. We did try Pentasa and opening up the capsules but she absolutely despises the granules-

Did any of your children use any other 5-ASA's that are liquid with success? Anyone have any expereince with Sulfasalazine- I have read that it can take a few days to adjust but when she had diarrhea I go into a panic because that is what we are trying to avoid!

What meds work for your children?

Thanks,

Gwen

 Reply posted for mygirlrj.

My 9 year old daughter has Crohn's and takes 9 pills a day. When this started she had never swallowed anything, now she does it without thinking.  At the very beginning she actually started out chewing pills along with some candy. (M&Ms).  After a few months of that she became more comfortable with swallowing little pills.  For capsules, in the past I have opened them and mixed them into things like pudding, whipped cream, etc.  You could also try crushing pills and mixing them into some of her favorite things.  It can be hard at first, but just now that it is possible.  Good luck.

 Reply posted for mygirlrj.

Hi,

I was NEVER able to swallow a pill until I was diagnosed with crohns at age 34. I used to get a headache and cry myself to sleep bc I couldn't swallow a Tylenol.

After I got sick, I didn't have a choice. Now I can swallow 6 giant pills at once. I can't do it with water. However, I can do it with food.

Here's what I do: take a piece of cake and chew it up until I'm ready to swallow it. I put the pills in the back of my mouth onto the middle of the mass of chewed food concentrate on swallowing the cake, and GULP, down the pill goes. Bc my brain is expecting me to swallow something already, I don't gag on it like I do if I just try to down it with water.

Try it with your kid, with a single pill. I'll bet she'll be able to do it. Seriously I was the worst pill taker in the history of man. This cake trick has saved my life.

Good luck.

 Reply posted for mygirlrj.

I just switched my 9 year old to the sulfasalazine tablets from the suspension b/c it was always an ordeal to get the suspension refilled.  She takes 500mg tablets (one twice a day) and they are very large.  Her doctor's office had us start with tiny M&M's for practice and then skittles, etc.....to build up her confidence in swallowing a pill.  I taught her to put the pill on the back of her tongue and then take a drink and swallow fast.  Sometimes she will take a bite of pudding with it or if it's during b'fast she will take it with a bite of cream of wheat.  She was put on the sulfa immediately upon her diagnosis of Crohn's (Sept. 09) and has been taking it ever since.  It has completely cleared up her symptoms of blood, mucous and tummy aches.  We call it our miracle drug.  She is back to her normal self again! 

 Reply posted for mygirlrj.

Hello there!!  My son is 8 and has Crohns.  When my son first got diagnosed he could not swallow pills.  He was 7.  He was given Pentasa (related to sulfasalazine) .  I would open the capsule and sprinkle the contents on a big spoon of applesauce.  It worked!!  But he learned to swallow pills quickly because he go sick of applesauce.  Give it time.  Ask the doctors about medicine you can put in pudding (like another mom was doing) or apple sauce.  I hope that helps!! 

 Reply posted for mygirlrj.

When my 8 year old was diagnosed when he could not swallow pills, but we got him to be able to take them pretty quickly by burying them in pudding.  I don't think he can handle large pills this way (he can take 10mg prednisone and 75mg Imuran), and I don't think he can swallow pills without pudding, but it has been a great way to get past that mental block that makes kids think they can't swallow a tiny pill when they routinely swallow huge mouthfulls of food.  I hope this helps!

 Reply posted for mygirlrj.

On the other end of the age spectrum, my Mom is 86 and has trouble swallowing pills. I called the manufacturer of Colazol and they said she could take the capsules apart and mix it in somethng like applesauce. She did this for several months, but it didn't control her symptoms. Now we are looking for something else.

I have had Crohn's since I was 14 and I've learned over the years that the delivery of the 5ASA ingredient is critical in the effectiveness of the medicication in controlling inflamation. Modifying the original form of the medication without the manufacturer having clinical studies to back up the effect on delivery is at best a guess on where it will deliver.

I was on Azulfidine for 20 years back when dinocaurs roamed, but didn't know it came in a liquid form now. Can any of you please comment on how effective the liquid form has been for you?

Thanks! 

 Reply posted for mygirlrj.

Hello Gwen,

My son has had trouble swallowing pills on and off over the years.  He has taken Colazal by opening the capsule and drinking it in Orange Gatorade.  He took it this way for 2 years with good success.  Davis took Sulfasalzine for a few weeks (had to stop he was allergic to sulfa!).  We opened the capsule and he ate it in applesauce. 

I haven't looked into it yet but during our last stay in the hospital the nurse said that a speech therapist can work with the kids to teach them to swallow a pill.

Good luck - Be blessed, Tracy

 Reply posted for mygirlrj.

My daughter was put on Sulfasalazine when she was 4 because she was so young and couldn't swallow pills.  It is now 6 yrs later and (knock on wood), she is still on it (just higher dosage).

How do you know it is the med that is giving her trouble?   Could it be food, a stomach virus, anything else?  It may be.   My daughter didn't have any side effect, but I think like with anything else, perhaps your little ones system just needs a little time to adjust.  

I would probably just let the doc know of current status and continue with plenty of liquids, just so she doesn't dehydrate.  

Another thing you may want to try is teaching her to take pills.  My daughter went to Camp Oasis this past summer for the first time and the staff there was terrific.   They actually taught her while she was away.  They began with the smallest of candies (the little ones that come on the paper backing), then worked their way up to M&Ms, and then finally to the Mike N Ite, which is a  large capsule size.   It may be worth your while.   My daughter now takes her vit. d every day which is a small gel cap.

Good luck with this bump in the road.....it too will pass.

Lizzies Mom