New here. My 2 year old was just diagnosed.

[amor1218]

My 2 year old son was just diagnosed with Crohn's disease. He has been having symptoms since he was about 4 weeks old and we finally have a diagnosis. His colonoscopy a year ago showed focal active colitis, chronic gastritis, and lymphoid hyperplasia with no signs of it being chronic. He had a colonoscopy at the end of December and his biopsies now show chronic colitis and also inflammation in his stomach, esophagus, the duodenum, and the terminal ileum. It's a relief to have a diagnosis but also scary and sad that he's only 2 and will have this for life. I'll be doing a lot of research in the next few weeks while waiting for his follow up. I have actually used this site a lot for research already, while comparing his symptoms and issues that he has faced thus far. I know that its super rare for a kid his age to have Crohn's so I'll be sticking around to get advice. At some point I should type out his full story--it's been a real whirlwind of a ride.

 

[Pilgrim]

Welcome to the group. There are many experienced parents here with a wealth of advice and support. It has been a great help for us and I hope it is for you. The first year or two is a huge learning curve.
We had our diagnosis when our daughter was 3. It is hard to imagine the future for her but lately I just try to make it the best for her at the moment.
On a positive note you have a relatively early diagnosis and good treatment makes all the difference.
Hugs.

 

[Maya142]

Hi and welcome!
How is your kiddo doing now? Has there been any talk of maintenance meds yet?
There are several parents here whose little ones were diagnosed. I will tag Farmwife and my little penguin.
Keep us updated!

 

[amor1218]

Hey all. I feel like I've done so much research in the past year and yet I have so many questions. We lucked out that his GI actually specializes in Pediatric IBD so I'm confident in his ability to get us going in the right direction. He wants to see us in a couple of weeks to talk about treatment and to discuss the plan so if he doesn't start any meds before this, I'm assuming we will start some then. My son was put on Apriso after his first colonoscopy due to focal active colitis and that seemed to help some. The doctor took him off in September basically to see what would happen since he didn't have a diagnosis at that point and the doctor wanted to see if symptoms returned, which they slowly did. I'm just surprised to see the other parts of his digestive tract starting to show inflammation. When we went a year ago, the only chronic inflammation was gastritis. He also had focal active colitis and lymphoid hyperplasia.

 

[Farmwife]

Hi and a warm welcome.
It's so strange to say a "whirlwind of a ride" when their only two years of age but I would say the same about my child as well. Sadly most can say that on this forum.

My girl also had issues from near birth but was dx at 3.
If I'm correct in my findings the focal active colitis and lymphoid hyperplasia is a common finding on scopes for our kids with ibd.

That sounds great about your doc being so knowledgeablein ibd in children.
Please ask as much as you like. We're here to help.
Hugs

 

[Pilgrim]

It is my understanding and experience that in VEO-IBD the disease location and severity is shifty rather than stable. Our daughter started out with primarily colonic Crohn's but now it is located right side, TI, some stomach and small intestine.

 

[Farmwife]

My girl had spread to the stomachon down thru to the rectum but her stomach and TI area being the most effected.

Has EEN been brought up?
That's using formula (usually a special type) to induce remission or at least aid in remission.
Some doctors will use this in place of steroids.

My girt still does her formulaas needed for flares and to make sure her body is getting enough calories.

 

[amor1218]

Pilgrim-you gave me a new term to research! I had no idea the little ones were classified as VEO-IBD...I've been reading all morning!

Farmwife-I don't have the pathology yet so I don't know the severity of what they found and we have to wait a few weeks for a follow-up but I'm definitely wondering how bad it is and where it's affecting him the most. He was actually on PurAmino formula until recently. He weaned himself before this diagnosis but I think I could get him to drink it again since it hasn't been too long since he had it. He started Nutramigen when he was a few months old and then was switched to PurAmino before he turned one for the dreaded "milk protein allergy" that they thought he had. Hopefully we go over some sort of nutrition plan at his follow-up cause my little guy is having a hard time growing. He keeps falling in percentiles at every appointment.

 

[Farmwife]

Yes a lot of our kids have the growth issue.
Sometimes you can ask for samples of different formulas.
This way you can see what he likes best.
My daughter has a gtube surgically placed to get her feedings if she doesn't want to drink it. The tube had been a life saver and we've avoided many hospital stays.
Grace now drinks Boost kids essential (prescription strength).
The flavor is better and she takes it be mouth.
To funny, Grace has the dx of milk allergy but didn't have it. Lol
Now my son and I do. Figure that one out. Lol

 

[CrohnsKidMom]

Welcome to the forum! Sorry to hear your little guy has been sick, but there's a great measure of relief in getting a diagnosis. My son was 8 at diagnosis, so a little older, but did show mild symptoms from about 2 yrs old. His disease was located in the middle of the small intestine at diagnosis, but MRE showed affected area from bottom of stomach to bottom of small intestine when he had a flare 1.5 yrs ago. Always keeping me on my toes! Once treatment is in place, those percentiles will hopefully start climbing higher for your little guy. It's a rough ride for sure, but things do get easier.

 

[amor1218]

Thanks for all of the warm welcomes. It makes me sad that so many little ones are dealing with this awful disease. I keep rereading the biopsy results and shaking my head in disbelief.

 

[polly13]

Hi amor and welcome and sorry you had to find us. My little girl Lucy now 8 was diagnosed at 2 also. Big hugs I know what a difficult time you are going through

 

[amor1218]

I have the pathology report in hand. Just wanted to put out there what it all says.

Terminal ileum biopsies:
-Benign superficial small bowel mucosa with lymphoid hyperplasia and focal active ileitis.
-negative for granulomas, atypical change, or malignancy

Right Colon biopsies:
-benign colonic mucosa with moderate chronic colitis with focal activity
-negative for dysplasia, malignancy, or granulomas

Left Colon biopsies:
-benign colonic mucosa with moderate chronic colitis with focal activity and focal areas of architectural distortion.
-negative for dysplasia, malignancy, or granulomas

Espophagus biopsies:
-Superficial benign squamous mucosa with focal acute esophagitis
-negative for glandular mucosa, eosinophils, or organisms

Antrum biopsies:
-fundic and antral mucosa with mild chronic antral gastritis
-negative for active inflammation, atypical change, or intestinal metaplasia

Duodenum biopsies:
-superficial small bowel mucosa with intact villous architecture with mild chronic duodenitis
-negative for foveolar metaplasia, active inflammation, atypical change, granulomas, or organisms

Comment:
The colon biopsies display chronic colitis with focal left-sided changes of chronicity in areas of activity. This may represent an inflammatory bowel disease in the appropriate setting and there is focal active ileitis favoring Crohn's disease. Correlation with the clinical and endoscopic features is suggested.

I asked the doctor and he said that his case his mild to moderate Crohn's. All of this inflammation came about within 11 months since his last set of scopes. The only thing on that was focal active colitis, mild chronic gastritis, and lymphoid hyperplasia. Visually, the doctor only saw nodules in the colon this time around. I think his Crohn's was caught very early.

 

[Farmwife]

Very similar to Grace's.
Unfortunately, kids are put into the moderate to severe because there're children.
Kids tend to have more aggressive cases than adults.
But I hope yours doesn't.

 

[amor1218]

Hey all...just and update. We had our first follow up since the scopes today. The doctor said his Crohn's is mainly in the ileum and colon. He ordered blood work for the usual stuff and also wants to rule out Celiac with blood work. He said that sometimes, Celiac can cause duodenitis and since L had that, he wants to make sure to rule that out completely. He wants to do a CT scan to check the small bowel. Since L had inflammation at the beginning and end of the small bowel, he suspects that he may have it throughout and if that's the case, he wants to switch his medicine to treat that area as well. He put him on some benefiber to help L go easier. The medicine has firmed things up a bit, and sometimes L has a hard time. He will say he pooped and whine and tell me to change his diaper, but it will be empty...and his poop resembles constipation poop even though he is going every day. The doctor is putting an email in to his colleagues from CHoP (he used to work out of there) for a kit to do blood work to check genetic markers for IBD. He also said we may be able to try Cow's milk in the future depending on how things look with the CT and blood work.

 

[Farmwife]

I'm glad there's a plan.
Is it all hard stool or is there liquid also?

My kiddo could never have much fiber but she tended towards constipation normally.

 

[my little penguin]

Yeah that ^^^^
Most do not recommend fiber for Crohns patients
What other meds is your child on ?
Can you get a second opinion ?

 

[Maya142]

If you add fiber, make sure you increase his fluid intake.

I believe CHOP does a lot of research on VEO IBD - especially genetic research. I hope they're able to help your kiddo!

 

[Pilgrim]

The typical bloodwork for celiac can be unreliable for children under 3.

 

[amor1218]

Hey all. His blood work came back. There were some slight abnormalities with his basic chemistry (protein and albumin slightly elevated, anion gap high, co2 low, high lymphocyte percentage, low neutrophil percentage) but everything else looked generally ok. The doctor said that the blood may have hemolyzed slightly so he will recheck the abnormalities at an upcoming appointment. His inflammatory numbers were low so that's definitely a good thing. He put him on an additional vitamin d3 supplement as L's is low and we also have to see about getting a Hep B booster as he is still not immune to Hep B, even after completing the 3 part vaccine series.

Farmwife--without his medicine, L tends to be on the mushy/mucusy side of poop with anywhere to 3-10 bowel movements a day. With his meds, he is down to 1 every day to every other day, however it resembles constipation poop (either hard balls or cracked poop with some mush). He actually does ok with fiberous food...its the laxatives that bother him. Miralax caused him to poop 13 times in one day and that was after one dose. The doctor wants to soften his poop up to make it less painful for him so he said we can actually try whatever L will tolerate and he will give correct dosage accordingly. We opted to go benefiber and see what happens.

My little penguin--L is on Apriso once a day. The doctor is potentially going to change that depending on the results of the CT scan.

Maya--Good call on increasing the fluids. L drinks a lot but i'll be sure to get him to drink more water...you can never have enough of that!

Pilgrim--I had no idea that the blood work may not be accurate. I'll ask his doctor about it. He doesn't believe it's Celiac anyway but was running it to make sure.

 

[Mehita]

Just reiterating what Pilgrim said on the Celiac. Not always accurate for little ones and as a side note... the Hep B non-immunity thing is fairly common amongst Celiacs. My Celiac son was tested and had no Hep B so had to do the booster. Even if the bloodwork comes back negative, just keep Celiac in the back of your mind as he grows, especially if he has ongoing or nagging problems. The genetic test might help confirm or deny Celiac risk as well. Good luck!!

 

[amor1218]

His Celiac blood work came back negative which is a relief, but I will definitely keep it in mind with him being under 3. I have to get his Hep B series redone and they will check his immunity afterwards. The doctor also wants to do an MRI instead of a CT scan because they would have to sedate him either way since he's so little and they say that its best if he doesn't have to drink the solution and be sedated right away so the MRI is the best way to go for his age. Waiting for an approval on it is seriously the worst.