New member here! Intro

[davidsmomma118]

Hi there everyone! I'm Kristina, momma to a 2.5 yr old undiagnosed little boy named David. Our journey began in August of 14' when David was around 21 mo old. About a month after we finished breastfeeding, the bloody stools showed up. He'd always had looser stools which the pediatrician and I figured were due to the breastfeeding, but we were already keeping an eye on it as Crohn's runs strong in our families. That history is my mother (severe case) and aunt (mild case) have it. My husband also happens to have it. Anyways, after many stool tests to rule out infections or other virus' the blood continued and the pediatrician suspected polyps & sent us to a ped's GI at St Louis Children's hospital. They scheduled an upper endoscopy & colonoscopy. The GI was on the same note suspecting polyps although my fear was CD. They both said it was highly unlikely to present this young....

In october of 14', David underwent the upper & lower scopes. Upper came back perfect thank God! Colonoscopy revealed no polys. Just utter chaos in terms of inflammation. The drs. couldn't make it past his descending colon due to all the bleeding caused by the tube. They didn't want to risk perforation so they pulled out. So they called it "indeterminate colitis", basically meaning to me, no answers.

The GI started him on sulfasalzine, 5ml 2x a day. Didn't help. Upped it to 7.5ml 2x/day. Nope. So they added prednisolone at 4ml/day in Jan 15'. That's when it started to ease up and the blood began to disappear. We were then transferred to the Pediatric IBD team at Children's. Fast forward to this April, finally after a gruelling slow taper (otherwise the symptoms reappeared), we were almost off of the steroids (.25ml). Mild anemia appeared. David's still not gaining weight. So they suggessted 2 pediasure/day with the continued meds. In May, David has now at 2.5 years old, finally reached 25 lbs! His bm's were partially formed to formed and his anemia was resolving. Steroids weaned. We were still having issues of blood in the stools cycling every stretch of so many days. (4-5 days no blood, then look here it is!

That's when I suspected a sulfa sensitivity. I expressed my concern to the doc, so we've just started Apriso. We're hoping to not have to start up the steroids again. We go back July 7th to see how things are going. Will do another fecal calprotectin sample test. I'm just very frustrated. Ready for a diagnosis between UC or CD. Ready for something to stick so David can feel better.

I'm very glad to find this forum! From everything I've been reading, I realize that I'm definitely not alone in this journey. It has put a lot into perspective for me, and I see there is a ton to learn!

Wishing better health to all of our little ones! -Kristina

 

[SupportiveMom]

It is hard when your kids are so young they can't really articulate what's happening. Don't get discouraged on the indeterminate diagnosis. We are constantly back & forth on that. After my kid'colon removed next month we will finally get the answer from dissection. Not the way I wanted to know for sure which type of IBD she has. One positive on the indeterminate diagnosis...more treatment options/meds. If my kid for sure had crohns she would never had been prescribed Simponi. That was the first drug that gave her any remission.

Hang in there! Sounds like you have knowledgeable support.

 

[Clash]

So sorry to hear of your son's struggles. I know it can be so hard in the beginning when the learning curve is so steep.

A lot of the same meds are used with both CD and UC so hopefully that won't hamper the process of finding the right med for him. Have they done imaging to determine if the inflammation may also be higher up in the small bowel? A colonoscopy nor an endoscopy would be able to see a lot of the small bowel. This could give some I dications as to a form of IBD since UC only affects the colon down.

I hope your son is able to find remission soon. Another option to the dreaded pred to calm things down is Exclusive Enteral Nutrition or EEN. It is a formula only regimen that has the same efficacy rate as pred without all the awful side effects.

 

[davidsmomma118]

Thanks guys welcoming replies!

*Supportive Mom - I'm sorry to hear about the resection, but am hoping that disection gives you definite answers! I'll say a prayer that it goes smoothly and look forward to an update. It is so hard on us parents & unfortunately you all know this better than I since we're just starting out. But the plus side answer you gave me about the "indeterminate colitis" definitely opens my eyes more. Thank you . I don't know how having more options in what seems like a never ending sea of options and decisions makes me feel better, BUT it does.

*Clash- I completely forgot to mention he did have an UGI with a SBFT at the end of december and that came back normal.

Again thanks for the support

 

[Pilgrim]

He is adorable! Those curls!

I'm sorry you are going through this. My daughter was diagnosed at the age of 3. She had the same issue at scopes where they had to pull out so she didn't perforate. Are you saying that they didn't take biopsies while they were in there? So, it may be awhile before you get a definitive diagnosis if that is the case.

We started on Sulfasalazine until she had her Crohn's diagnosis. Then went to Azathioprine, which she had a terrible reaction to. We also did two rounds of EEN (pediasure only diet) which helped a lot. Now we moved to Humira. She has been doing really well so far with that. That is to say that it has paid off to work through our choices until we found something that helps her.

I am hoping and praying that your little guy gets his diagnosis sorted out and get a medication that works well and safely.

I second looking into EEN for such a little guy.

 

[davidsmomma118]

*Pilgrim-

You're little one is adorable too . Even though they have their stomach issues we were blessed with beautiful babies!

You know, I definitely need to double check about the biopsies taken if any, because sad to say, I don't remember. There was just so much being thrown out at us in that moment.

I've read up on some of thee EEN stuff, but for the life of me, can't wrap my head around having to keep normal food from D's hands if he's actually asking for it. How did you go about that with your little girl? Was it awful?

 

[Farmwife]

Hi and welcome. I'm sorry to hear about your son's struggles.
My girl is 6 but dx at 3. She's had problems since 3 months old.
My girl did EEN and was so sick by the time of dx that she didn't care about eating.
They put a noise tube ( called an n-g tube) in and was fed that way.
Again she was just happy that mama want begging in tears for her to eat and
I was happy that she was getting all her nutrients.
Now my Grace has a gtube surgically place in her abdomen to put the formula
thru if she can't drink it by mouth.
We loved EEN and even now she does partial EEN.
My Grace had stomach involvement so she is on it long term.

I hope her gets better and better soon!:hug:

 

[Farmwife]

Btw, we treat EEN like a medicine! For my Grace it's not a choice. It's about surviving and the formula helps her do that!

We offered non- food rewards when she was on full formula. She had to sit at dinner but she got to bring her art supplies. She love it!

 

[Pilgrim]

*Pilgrim-


I've read up on some of thee EEN stuff, but for the life of me, can't wrap my head around having to keep normal food from D's hands if he's actually asking for it. How did you go about that with your little girl? Was it awful?

It was really hard for the first 3 days. We even kept her from the table when we ate (we have big family meals). But she asked to sit with us. I think she felt better when she could be included and she seemed to understand it was necessary that she not eat. Like Farmwife, we were very matter of fact and tried to be practical in our approach (even though our hearts were breaking). She was allowed a clear popsicle each day, and we gave her that as a reward when the other kids were getting something she liked to eat. She had vitamin D deficiency so we were allowed to give her supplements in gummy form. We gave her one after every drink. It became a really special treat. She was 3 and a half on the first round of 6 weeks. So, a bit older than your guy.

Farmwife! NG tube = Nasogastric Tube I'm :lol: here because they must have said "noise tube" to Grace and it stuck!

 

[Farmwife]

:rof: I real need to do a better job proof reading but I don't!!!!:rof:

Yes a NOSE tube. Thank your Pilgrim:hug:

 

[CrohnsKidMom]

Welcome to the forum, but so sorry you are going through this! Just wanted to send my support and best wishes. I hope you get some answers soon for your little guys and get him on the road to good health soon!

 

[greypup]

Sorry you're going through this. I wanted to say "hi" and let you know my daughter has been a patient of St. Louis Children's Hosp IBD team for two plus years. We especially love Dr. Elizabeth Utterson.

I hope that you get answers soon!

 

[RexMom]

Hello. I am new here too. So sorry you are going through this.

My son just turned 3 last month and was diagnosed last week. You're ahead of me in terms of knowledge. I'm still trying to make sense of what his life might look like. I have an appt next week to sit down with our gi de to go through all of it.