2 year old just diagnosed with Crohns

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Augustine

Augustine

Joined
Jul 18, 2013
Messages
8
Hi,

My son has never had normal BM. He nursed 2 years and wouldn't take any solids until 14 months. He started having tiny amount of blood off and on the last few months, ped. told me if it kept happening it might be colitis. Allergist diagnosed FPIES. This past Saturday he had a lot of blood and really scared us. I called the on call doc and they said if it happened again go to hospital if not go to pediatric GI Monday. We made it to Monday and he had three bloody diapers and last just blood and mucous. Husband took him and diapers in and I stayed with our 3 other children. Doc didn't like the last diaper at all and scheduled a colonoscopy and endoscopy the very next morning. I just got the results today that he has Crohns in the stomach, colon and illium. I have no idea if this is really bad or mild. She did tell my husband his colon looked like raw meat. I'm trying to get him to drink Neocate Jr. Doc wants him to take 14 days of Alinia antibiotcs but he started screaming out in pain this afternoon and I don't know what that is about. I called the on call GI and he said maybe we need to quit messing around with antibiotics and get on prednisone to take down the inflammation. I don't know anything. My oldest has severe food allergy, which right now seems way easier than Crohns. Tell me anything. I'm sort of a crunchy path of least resistance type of mom if there is such a thing with this stuff. Help.
 
:welcome: I see you found the place

WOuld they do an NG tube for his formula?

I know we ended up needing pred for DS.
IT is a love hate relationship
we love it since it works so well for kids and inflammation
but hate the side effects they sometimes get.

My son has been on two courses of pred.
One 6 weeks the other 3 months.
He also did 9 weeks of formula only.
:hug:

The facts are simple the younger the age of dx the more severe the disease course.
anything less than 19 is considered very young for IBD.

YOu tried to save the intestine from as much damage as possible.
THe longer inflammation goes on the more likely scar tissue forms.
scar tissue can not be fixed only removed.

So our kids take the scary drugs
it keeps there gut healthy (somewhat if we are lucky) until safer drugs come along.

most parents just pray for the scary drugs to work.
 
I'm sorry your baby is so sick! I would recommend scheduling an appointment with the GI where you can discuss the diagnosis in detail and get all of your questions answered. I brought my Mom with me so she could keep my daughter occupied and I wouldn't be distracted. We were given a nice IBD folder full of information and resources and our GI discussed possible treatment courses in detail. I think that is important. Plan A didn't work for my daughter and now we are working on Plan B. Things change.

As for medications, my daughter does seem to improve with antibiotics but also needs other meds to keep her healthy. It is a trial and error sort of thing. I hope you are able to find the right combo for your son quickly so he can feel better. Poor little guy.
 
So sorry to hear about your little one. I also am a "crunchy" type but I will tell you MLP hit the nail on the head. The faster you get inflammation under control the less likely he will need surgery down the road. I have seen what untreated Crohns is like and it isn't pretty. I took the prednisone and within days I had a different daughter. Fair warning though, after the prednisone or even a course of Exclusive Enteral Nutrition, maintenance meds are needed. Your doc will probably start talking to you about the different treatment courses. We are hear for you! I hope your little guy gets some relief soon.
 
Thank you so much. So is the doc thinking the 14 days of antibiotics is supposed to take down inflammation? Does that happen for some people?
 
I have heard of it happening but not a lot with the kids. Pretty much all the people I am aware of start with steroid or EEN to attack inflammation quickly and also many start the maintenance drug of choice because some of them take a while to build to therapeutic levels.
 
What is MLP, what is EEN? Neocate count for that?

Is there any chance the diagnosis is wrong or are the biopsy results straight for sure for Crohns?

Will he be on drugs constantly?

Was he born with this?
 
MLP is me- My little penguin :ylol2:

EEN is Exclusive enteral nutrition
Basically formula only with NO food for 6-8 weeks
Neocate is amino acid based so is counts as EEN if you dont have any other food with with and doc has it has his sole nutrition

WE got three opinion from three separate Gi's to determine if ds truly had crohn's
all said the same thing.

Medicine is for life but what that combo will be will probably change over time.

Take it one day at a time
 
My Little Penguin is being humble! MLP= My Little Penguin and so much more! She is pretty much our ace in the hole! Our source for all research, information and our constant companion and shoulder to lean on. She even has her own fan club!

She gave you great advice. Breathe. Take your time to process all the info and do your research. This is an amazing place for information and support but it can be overwhelming at times. Duck in and out as you see fit. There will always be someone here when you get back.

I like to think meds aren't for life because they are going to find a cure. So meds are just until...and they do change.

Ha! I am 17 months into this journey and my daughter is doing so well I actually found myself wondering the other day if they actually got it right. Maybe she doesn't have Crohns after all. Then I came out of my castle, put my big girl panties on and faced the music.
 
Welcome to the Forum, Augustine. I'm sorry to hear your little guy has been so miserable... poop pumpkin.

On a positive note, you have a diagnosis and now you can work towards helping him feel better. Antibiotics never worked for my son in terms of inflammation. Often times actually made his symptoms worse. Every child is so different though and like the others have said, there may be a lot of trial and error before you find the right med(s) for your son, but there is a good chance something will be his "miracle drug".

Right now I'd focus on knocking out that inflammation. Be patient though, it sounds like he has a lot of healing to do. Prednisone can work wonders, but an NG tube with EEN is very much worth considering since he's so young and, unfortunately, will likely struggle with this disease off and on for the rest of his life.

Definately follow up with a pediatric GI that you're comfortable with, start keeping notes on your son, and ask for copies everything for your own records. Come back here often and ask lots of questions. We've all been there and done that and are here for you.

While this is all overwhelming now, there will be better days to come once you get things under control. There are many kiddos here who lead perfectly normal lives, are healthy, play sports, are growing like weeds, and who have learned to appreciate the good days.

Keep us posted on how things go...
 
Hi Augustine and :welcome:

I am so very sorry to hear about your little one. How difficult and heartbreaking for you. :ghug:

You have already been fabulous advice so I will just chime in with three things: :ybiggrin:

1. I can't help but offer my support for the advice you have been given about bringing this disease under control ASAP. Fast response time = less inflammation = avoidance of lasting damage. My children did not get this opportunity due to complications and as such surgery was their only option. Now while it has provided them with a what has turned out to be a wonderful outcome thus far it nonetheless remains a lasting legacy. Yes the drugs are scary but for most, if a side effect develops or it doesn't work you walk away and move to the next one and normally with no lasting effect but surgery is for life. Once that piece of bowel is gone it is gone for good. I hope my saying this isn't scaring you hun as that is not my intention. I just want you to see things differently so that the need to give your little boy medication doesn't become overwhelming and guilt ridden for you. :hug:

2. Antibiotics: They can and often do have a very specific role in IBD. The bowel, by its very nature, is not sterile. When you have inflammation present in the bowel it will breach the first layer of the bowel wall and by breaching that wall you are now introducing non sterile matter into a sterile environment. This is turn not only creates further inflammation but it is also likely that infection will now take up residence. It is very common when someone is having and acute episode (flare) that steroids will be prescribed along with with an antibiotic like Flagyl. Flagyl is often the preferred antibiotic as it also has anti-inflammatory properties.

3. mlp: We are very blessed indeed to have mlp here. Her research and knowledge are second to none and...well she just rocks! :headbang:

Good luck and please keep us posted with how you are getting on. :heart:

Dusty. xxx
 
Welcome Augustine! Your poor baby! I'm sure you are very stressed right now, to say the least. My son is 8 and was dx'd in March. Our GI gave us 2 options for treatment, steroids (Prednisone), or EEN- formula through a nasal tube, no food. Both are deemed very successful in bringing inflammation down. EEN, particularly so, which is what our GI was recommending. Given my son's age, we thought the NG feeding would be hard, so we opted for prednisone... but maybe if my son was older, or younger... I asked about antibiotics, but our GI thought they would be of little use-at least in my son's case.

Take care, Augustine. Drop by the forum anytime. I have learned so much here. Thank you MLP and DustyKat and all others!!!
 
Welcome!

So sorry to hear about your little one, you must be devastated :(.

You have come to the right place though. You already have some fabulous advice.

If you have any questions or concerns someone on here will always have some advice and support.

Good luck, I really hope your little lad feels better very soon xxx (((HUGS)))
 
Are there any others with diagnosed children this young???

And if the biopsy showed Crohns in 3 places it's pretty certain diagnosis???
 
I thought my son, age 8, was young, until the GI nurse informed me that they often see 1 and 2 yr olds in the clinic. It's more common in teens and young adults, but according to our GI they treat lots of little ones.
 
Yes I would say it is pretty certain. Some docs won't dx certain Crohns unless biopsies confirm it.

I can't imagine how hard this is for you. With older kids at least we can ask questions and get responses. So hard with a young one without the vocabulary to convey what they are feeling. Hugs to your whole family :hug:
 
Welcome to the forum Augustine,
Yes, there are others with young children Polly13, Mylittlesunshine, ethanclark, farmwife, are just a few off the top of my head who have young children. They are on and off the forum as time permits.
You have been given some great advice and I can only agree about getting inflammation under control fast.
 
Thank you all so much. I ordered the Crohns for Dummies book and that one about the 1st Year after diagnosis. We have an apt next week to go over treatment options and nutrition. I got him to take the vanilla neocate jr on his rice cereal this morning, maybe he'll acquire taste. Our house is already top 8 allergy free due to oldest child's severe allergies. I wonder if thing may have been diff. in a normal food household?

Is it likely after a little while doc will want to scope again pretty soon?
 
Docs differ on the scoping part. Our doc scopes about 2 years post dx and treatment commencement to confirm mucosal healing. Even if clinically symptom free and blood tests are all normal there is a small chance that there may be simmering inflammation so he goes in to see. If all clear at that point then every 5 years or so.
 
Our GI only scopes every 5 years unless there is a problem. I don't think most GI's like to do the invasive procedures on kiddos too often. Another good test of inflammation is the fecal calprotectin stool sample. That one is easy... just collect some poop and ship it off.

Do your research on EEN and have your case ready for the appt if that is the route you'd like to try. Be forewarned though that EEN isn't hugely popular in the US like it is in some other countries, so you may find some resistance from your GI. If you think your son would tolerate it, it is a great option.
 
Yeah dat^^ There was a time when my daughter wasn't fully responding to Remicade and every time we dropped down in Prednisone my daughter got worse. Doc suggested adding MTX. Because of what I learned here I asked if a course of EEN would help rather than jumping to another med. He said we could try it and it worked. Saved my daughter a whole year of Mtx and even though we recently added it for other issues it is low dose and I don't think last year it would have been so low. I will never understand why we parents have to be the ones to bring up a treatment option. Oh I get the docs view...parents don't like it..compliance tough...no one sticks with it. But still they should present it.
 
A positive biopsy is the gold standard for a diagnosis of Crohn's. If you have that then you have your diagnosis. :(

Dusty. xxx
 
Hi Augustine and welcome to the forum
My daughter Lucy was diagnoised when
She was 3years old.
We started on EEN via NG tube but now
She has a mickey button fitted, it has worked
For Lucy now Lucy is on low does of pred
And 6mp. I hope u find a good treatment plan
To make your little one feel better x
 
Hi Augustine and welcome to the forum!

My son was also 2 when diagnosed and your son's symtoms sound so familiar to me. We were told that when a child so young gets IBD, the reason may sometimes be immune deficiency. That's why basic immunity tests should be done too.

I know how confused you are feeling at the moment! Everything is new and scary. But try to read as much as possible. This is the best forum ever for that and you will get a lot of support and advice here!
 
Hi and welcome.

My little Grace has struggled since birth.
She has more then colitis but I agree, her colitis is the most challenging.
You've been given great advice. I second the EEN. Grace has a g-tube that can be used for her feedings. One thing to remember for kids as young as ours is growth. They NEED to grow. I think EEN should be pushed by all GI's with young patients. The fact remains that our kids Will ALWAYS need extra "help" to keep growing.

Please feel free to pm me. The farm is busy but I try to check in.
 
Thank y'all so much. So far I've gotten him to take the neocate jr on his rice Chex the last two days. I let it soak and get soft so it's all in there good. I got some Nesquik syrup in strawberry and one in chocolate. Before I knew he had Crohns I did notice the couple times he had chocolate he seemed like he had gas pain. I remember when my food allergy child was a baby on the food allergy forum people did the syrup flavors to get them to drink the neocate and elecare. Is there any reason y'all know of why that might not be worth a try for someone with Crohns? Also my little guy wants to eat chicken and turkey constantly. He eats way more protein than for his age, but on the blood test it was still slightly under. Is it okay to just let him eat all the chicken and turkey he wants or can that be bad for some reason? This past week he's been eating soft chicken and turkey and soft rice and softened rice Chex and drinking white grape juice and water and maybe some rice milk and I've been trying to get him on the neocate jr more and more. we see the doc next wed.
 
Last edited:
The only thing I can think of with the syrups is if they have carrageenan in them. Some people with Crohn's avoid carrageenan because some studies have shown that it can cause inflammation in the gut. Personally, we don't avoid it completely here, but are more conscious of it.

With the food, if he's inflamed and has been for awhile he's probably not absorbing nutrients well and is therefore craving the chicken and turkey. Once you get the inflammation under control, absorption will get better.
 
Hi and welcome. Sorry to hear about your son's diagnosis. I don't have any experience of dealing with this for younger kids - my son was 12 when diagnosed. However, our first line treatment for Crohn's is the 8 week EN liquid diet (no food at all) which he had to have through an NG tube as he couldn't stand the taste! It certainly got rid of all my son's symptoms for a good few months with no other medications, but now my son is on 6mp and doing okay.
Good luck, hope the treatment helps your son quickly.
 
^^^^^ yeah that
If the doc is having him do neocate as a treatment ( not supplement )
Then there is no added flavoring ( syrup or otherwise )
And he would have to drink it all or have an ng tube .
My son drank about 64 oz a day of peptamen jr ( 7-8 boxes)

Neocate sells flavor packets
Plus they make flavored E028 splash juice boxes .

Good luck
 
Augustine said:
Is there any reason y'all know of why that might not be worth a try for someone with Crohns?
Click to expand...

There's always some discussion about sugar feeding bad bacteria. We've always encouraged moderation for our son but we've never noticed any immediate problems with sugar. He was much older when dxed though Mom! I can't imagine how tough it is for all you guys with the little ones. Many hugs!!
 
If you aren't doing exclusive EN just yet then I think the chicken/turkey and rice should be fine. Those are the first two foods our GI had O add when she transitioned back on to food.

Hang in there mama! Wednesday is coming and you will have a lot more answers, professional advice and hopefully a good solid plan!
 

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