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Hi.  I am Christopher's Mom.  Christopher is 5 years old and newly dx with UC, possibly the beginning of Chron's---based on endoscopy and colonoscopy.  Symptoms started about 4 weeks ago, were severe and now we are dx and on meds, Asacol and Prednisone.

Christopher is now after all of the diarrhea--now suffering with constipation...we are using Miralax as directed by physician without results.  Also, Christopher is getting food cravings which we are trying to control.    We want him to eat well and avoid trigger foods, but he also lost much weight before the dx. 

He is hungry, constipated, wants certain foods, aggressive and miserable.  All of this is overwhelming to me.  Any suggestions or sources of places to look for information regarding the above would be much appreciated.  I already ordered some suggested books from Amazon about food and diet.

Thanks!

 Reply posted for MBowmanMurphy.

When Victor was diagnosed last Jan w/UC...they began the prednisone and the only side effects were the swollen belly, chipmunk cheeks, late night cravings...but the mood swings were often...other than that...it really seems to work wonders and the joy of watching him eat again after the initial flare and him having no appitite was great! God Bless and stay strong...

 Reply posted for MBowmanMurphy.

That is Claire's worry every year too (bathroom location).  Have you done a 504 for school for him?  I would encourage you to do that so everyone is on the "same page" with Christopher.  It is a plan for the accomodations he needs at school and stays with him through college.  You do at least an annual update with his teachers and the school 504 coordinator and it is a great way to prevent misunderstandings.  Because our kids don't always "look sick", sometimes it is easy for the teachers to forget.  We have been very happy with having a 504.

 Reply posted for saddenmom14.

Thank you for your kind reply.  I am learning a lot and trying to understand the language and the lingo...so I can make the best educated decisions for Christopher. 

Christopher is eating, playing and laughing again and it is wonderful to see.  However, we are having issues with constipation and the miralax either works too well or not enough.  We are trying to find an appropriate dose and foods to eat that are gentle enough during this flare, yet will not constipate---that my picky eater is willing to eat.  For that issue alone, I am losing a little bit of mind.

We have our first follow up dr's appt since dx on Monday with our gastro.  Trying to formulate a list of questions.

In addition, we meet with Kindergarten teachers on Monday and trying to come up with questions.  Not only is Christopher now worried about starting K, but he is worried about having an accident and where the bathrooms are located. 

Trying to take it issue by issue and day by day.  Thanks again for your support and reply.

 Reply posted for MBowmanMurphy.

Hi my son was 16th months old we he was diagonosed with Crohn's and Colitis. He was first given a colonoscopy that gave us dx's and then put on the 5Asa's that was a total nightmare,and took us back to ground zero. Then, I was very hesitent to start on the predinosone which turn out to be wonderful, the only sideeffects was false weight gain. The eating we welcome because there was no eating prior too! Then there was still some flare and they added Flagyl which turned out to be our Miracle drug. I have been very reluctant to start him on any of the Meds(The big Guns" Imuran etc..) due to his age and the fact that out of 100,000 only 4.3 children his age share this ill fate.And, I am sorry they will not use my son as a Guinea Pig. It's almost a year later and my son is now 2yrs old and doing remarkably well. We are now down to 1-dose of pred/flagyl a day and soon to be off everthing completely! (God Bless us!) He's the typical 2 yr old and again doing very well! Thank you God! I too understand the nightmare, and the overwhelming feeling that you have! I assure it will get better. You just have to get to the inital part of it and everything else will fall into place!  As far as food I have been to the point of him not eating to now where he's back to eating whatever a "two year old" wants to eat!YEAH!!!!!!!!!! Feel free to email me F820@aol.com if you have any question or just want to vent! I'm always here!

 Reply posted for MBowmanMurphy.

One day at a time is the perfect motto for you right now!!  If you ever want to email me, feel free.  julie@hope4kidsinternational.org  I have some verrrrrry entertaining Claire-on-steroid stories that are funny now.  Not so much then.  

Julie (Claire's Mom )

 Reply posted for AZMOM.

Thank you Claire's Mom!  Our nearest local pediatric support group is 3 hours away so I will be using this board a great deal. 

I like both ideas and look forward to trying them out. 

I have been on steroids and understand the urge to eat, but as you mentioned wanting Christopher to watch what he is eating, how much, how often is making me a little crazy.  At the beginning of the summer, I never even knew children could get these diseases...and now I am looking at treatments plans, starting Kindergarten and 504s, side effects of steroids, diet and nutrition for a child with UC...and watching my one and only struggle.

For today, this day at a time.

 Reply posted for MBowmanMurphy.

Hi Christopher's Mom.  I'm Claire's Mom.  She was 6 at diagnosis (last summer 2009) and we had a terrible time with the steroids.  They definitely did a number on the inflammation but yes, we swung the other direction to constipation and experienced all of the emotional highs and lows of life on prednisone.  It is very difficult for them and of course, for the parents.