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My five year old daughter was recently diagnosed with UC.  We had an upper endoscopy and colonoscopy scheduled and fully expected to take her home that afternoon.  Nine days later, she was released from the hospital.  Her UC had attacked her entire colon, her hemoglobin and hematocrit had bottomed out, they were ready for transfusions and she is anemic.  Her dad and I are despearately trying to learn about a condition that we had never heard of before December 11.  I was happy to find this website.  Does anyone have any suggestions for books or websites.  Also, does anyone have a child about the same age, and how do you explain the condition to them? 

 Reply posted for lealkire.

Hello,

My son was diagnosed at age 13 with UC, PSC and EE. I am in Illinois.

I would be happy to share our story if you want. Please contact me at dkb_ride@yahoo.com

Diane

 Reply posted for lealkire.

We are able to get Sulfasalazine(Azulfadine) in a liquid- I know that you will be able to get a liquid that is actually not too bad- my daughter did not complain about the tatse. Also, you can get OraPred- prednisone in a liquid- it is like a grape flavor and again my daughter does not mind the tatse.

Where are you located- Are you in the US? We are in CA.

I would also highly suggest a good probiotic. We use VSL#3.

I am sure your daughter will start feeling better everyday- also while they are on Prednisone they seem to tolerate all foods fairly well- my daughter is hungry all the time!

 Reply posted for mygirlrj.

A week before we went to the hospital, she had her third set of bloodwork done, which showed her blood levels were too low.  That day, the specialist started her on Predinsone, Flagyl and liquid iron.  When she was admitted, she was on a potassium drip, flagyl, azulfadine, prednisone, protonix and one other iv.  Three days later, they brought in liquid iron and explained that it was stronger than what they were giving her at home.  She vomitted for five hours before I could get the nurse to hang the zophram.  That really set her back even further than she was when she was admitted.

When she was discharged, we were told to continue the Flagyl until it was gone (4 more days), and she is on 1500 mg of azulfdine a day (3 pills a day) and 30 MG of prednisone a day.  She also takes a multivitamin.  We have only been out of the hospital for nine days and she has started to get an appetite back.  She was literally down to just eating bites of food a day because of the pain.  Now she is eating an entire sandwich.

I'm really interested in the dietary changes.  We have a specialist who encourages some of the different diets.  We don't see him until the 6th.  She is supposed to step off of the prednisone in February.  She has really been a trooper throughout this.  She had just turned five prior to being diagnosed.  I can crush the azulfidine and put it in things and she knows that it is her medicine "yogurt" or whatever we put it in.  A spoonfull of creamy peanut butter seems to be her favorite.  She absolutely hates the prednisone.  And she stresses about when she has to take it.  I know that the pharmacies can sometimes flavor the liquid medicines and I'm going to call them today to see if they can do it.  I also was told that while they don't make liquid azulfidine anymore, the pharmacists can mix it, it just costs more. The pills get to be difficult for someone so little.

 Reply posted for lealkire.

Hi- My daughter is 9 and was diagnosed with UC at the end of Oct.

It has been a whirlwind and it is very hard to grasp- but we do it anyways-

it was very hard - I spent weeks crying and being very miserable- even at 9 I can't explain it all to her- she is on so many meds- supplements etc.

I would recommend a book called What to Eat with IBD by Tracie Dalessandro- it is helpful.

What meds is your daughter on currently? Do you have her on a good probiotic? I recommend VSL#3- you can get it many places- where do you live?

Also, Omega 3 supplements are good as well as Calcium.

Is your daughter better now?

I am sure it was very scary to have her in the hospital- . I sure hope she is feeling better .

I look forward to hearing back from you!

 Reply posted for lealkire.

We have all been "new to this" at one time or another.  My youngest daughter was diagnosed with CD at the age of 4 (though she was sick from infancy).   I remember feeling like my world was spiraling out of control.   Like you, I had never heard of this disease 'til that summer day. 

My best advice to you is educate yourself.  Read everything you can get your hands on.....after all, you are your childs advocate. 

Your trips to the grocery store will take a bit longer, lots of label reading, but eventually it will become second nature.  Being my daughter was so young, she kind of grew up with a "special belly".  I always make sure I have plenty of "safe snacks" for her to take to school in case they are having a movie day and will be serving the much dreaded popcorn or if she is going to a friends house for a play-date to take along with her. 

It will be six years of the CD diagnosis and after all of this time I can assure you it gets easier.   I don't even call it a  "diet", it is a  lifestyle.   Given her age, she has never been one to have fast food or to develop unhealthy eating habbits.   Over the years she has been able "gauge" what she can and can't tolerate....don't get me wrong, she knows how/when to "cheat".  

With constant monitoring, healthy diet, regular meds, the possibilities for our children are endless.   That is one thing I have always focused on, do not let this disease define you......you need to define it!  I encourage her to try anything.   She is currently on a gymnastics team and it is amazing to see her in action.   Sure we have our bad days, but in the big picture, the good days out weigh them by far!

This is a wonderful source of information, lots of advice and sympathetic ears.   Let me know if I can be of any help.

Lizzies Mom