My 2 yrs old just diagnosed with pancolitis

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ohgeejen

Joined
May 26, 2015
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My 2 yrs old little girl has just been diagnosed with pancolitis. My husband & I found out recently on May 12, 2015. I didn't understand what it was until the doctor sat us down & discuss it with us. I cried my eyes out. My daughter was hospitalized for the first time on May 8th 2015. I rushed her to emergency after i noticed lots of blood when I wipe her. I freaked out. It was like a girl on 2nd day period which is the heaviest.

In the hospital they ran all these test on her. I cried my eyes out when they first thought it was meckels & if she does have it she will require surgery. Even the surgery doctor came to see me before the results are out! Results negative. But later she had a colonocopy is when they would find out the truth.

I was told she has the worse of all. Pancolitis. Affects all her big intestine. She will be on meds for life. No cure. Expect severe stomachache in the future & bleeding. Watch out if she's fragile due to low in iron. Will be taking iron & steroids for life. & much more.

I had to sit there & digest everything the doctor said to me. I had to pinch myself to see of it was all a dream.

My daughter is very very energetic as of today. She is taking her meds everyday & I have to mix it into her chocolate milk so she doesn't notice the iron. She is still bleeding whenever she goes potty. I'm so worried & this is my only child. I found this forum from Google hoping to find other people with this to help me out throughout my daughter's life.
 
Lots of good people here to provide support. You're definitely not alone! The first year is the hardest as you figure out what meds work best for your child. Lots of trial and error and lots and lots of waiting.

What meds did they put her on?

Hang in there, momma!
 
Hug, hugs and more hugs. Welcome to the forum but so sad you have to be here.

My girl (Grace, aka. Little Farm Girl) was dx at 3 but has suffered since infancy.

As said so well above the first year is the hardest.
It takes time to process this new changed way of life.
But with the despair you'll be shocked at how strong these kids can be.
They'll be able to smile thru pain that we never could.
They'll find more joy in the smaller things that we just take for granted.
Their strength will give you strength!

I'm glad you came to us and please fell free to ask question, vent, cry and even maybe we could give you a laugh...when you ready ;) (these ladies can be down right funny)!

We're all here for you and each other.

HUGS again
 
There is hope but like many for life diseases ( think
Asthma ) once you get a good plan , good GI and good meds you will get normal back again.
DS was dx at age 7 but has had GI issues since birth
He is now 11.

It's hard to hear but you will soon be an expert in the tests /meds/bloodwork etc for your kiddo

The meds sound scary but so does Tylenol if you read the insert .
So focus in the good they will do not the possible side effects she may never ever have .

Hugs
 
Wow! Sounds like it was a rough consult. True there is no cure yet but there is a lot of research going on and I truly feel that medical advances will outpace the disease in our kids and in their lifetime they will find the cause for each of them and they will be cured.

That said, I think your doc was giving you the absolute worst case scenario. It really is the goal of the GI's these days, especially with kids, to spare the steroid use as much as possible so while she will be on meds until there is a cure, I don't think the med will always be steroids. She may do stints here and there to handle flares but it shouldn't be constant.

Also, the pain and bleeding and such should also not be constant. Once you find a treatment plan that works for her, she should experience long periods of remission and feeling great.

My daughter has Crohn's and has been in remission almost 3 years. Her friend has pancolitis and she has been in remission for two years.

Hang in there! The first year is the roughest. and I can only imagine how difficult it is with one so young but it does get easier and better. :ghug:
 
There are better days ahead! You are in a hard place, but once treatment is in place, and her body is responding, you will see big improvements in her health and you will relax a little. Welcome to the forum. You will find lots of help and support here.
 
Thank you every one for telling me there's hope & stuff. I cried when I read everyone's comments. I was so deeply touched by the support I have here. My baby is still bleeding. She has a check up with the hematologist tomorrow. Her face is starting to look pale but still active. I'm very worried for her.
 
Very sorry to hear. It is very hard to get this unexpected diagnosis. Sending you a big hug! Keep us posted how she is doing! I do want to reccomend getting a consult with an immunologist. Sometimes when kids are diagnosed this young they can have an immune issue going on to which IBD is the secondary issue. For some reason many GI's will reccomend this but other's seem not to be aware of the link. I would encourage you to get a consult. We have done one and I know other's on here have as well.
 
Last edited:
Just got back from her hematologist. Her blood count is low again. 7.9. Doc said because she is bleeding more she is not taking in the iron @ home. So they decided to give her iron through IV tomorrow. My baby looks pale. She is being very fussy lately but still a monster @ home.
 
My daughter was diagnosed last year at the age of 3 yrs. It took about 3-6 months to reverse her anemia with daily doses of iron at home by mouth. It took about a year to see a return to energy with medicine they call "biologics".

Just remember that Crohn's or no Crohn's she is still 2 years old! They are supposed to be little monsters at that age! Don't forget a lot of hugs for both of you to get through the rough patches.

I hope the IV iron helps quickly with her energy levels and overall wellness.
 
I am sorry you are having to deal with all of this. Iron infusions are much more effective than the oral iron. There are studies and papers that back that up,I just don't have them bookmarked for easy access.

Is there a plan for a maintenance med?
 
crohnsinct said:
I am sorry you are having to deal with all of this. Iron infusions are much more effective than the oral iron. There are studies and papers that back that up,I just don't have them bookmarked for easy access.

Is there a plan for a maintenance med?
Click to expand...
What is a maintenance med?
 
ohgeejen said:
Her current meds are...
PrednisoLONE 5ml
ESOmeprazole 1 packet
Iron 3ml
Click to expand...

Prednisolone. Is a medication which works to reduce inflammation in the short term but you can't on long term due to side effect.

ESOmeprazole This for the treatment for gastroesophageal reflux disease (GERD).

Maintenance medication is used to stop the inflammation comming back.
 
My baby had a GI check up. Her inflammation is gone for now. Whoohoo! Doc is cutting back her steroids & giving her a maintenance drug now. Forgot the name. She had to get an iron infusion yesterday cause it was a 7.5. Now she is starting to get her color back. Before she look so pale & had dark circles under eye.
 
I'm glad she's doing better.
Folic acid however isn't " normally" a maintenance med.
It's a vitamin given normally with methotrexate or I guess if she's deficient in it.
Did the GI explain why this as the maintenance med?
It's it possible methotrexate will be the next med given?
Sometimes folic acid and Mtx are given in conjunction as the folic acid help stay off side effects and helps do something else...I forget now.:yfaint:
 
I really don't know. She said maintenance drug & I was thinking "oh that's why u guys were referring too! Doc didn't mention any other meds. Just told me if she can tolerate this without bleeding then she will continue on it. If bleeding continues stop & call her, she will prescribe a new med.
 
Folic acid is given with Methotrexate. If my memory is working right.
 
it feels weird to me a doctor would call Folic acid a medication/maintenance drug and told you right from the start your child would be on meds for life... Folic acid is a vitamin supplement. And as others have stated often prescribed along with methotrexate, which is a real medication. are you 100% sure the doctor didnt prescribe anything else aside from the folic acid? I'd personally call the nurse to clarify this issue. Sometimes in the heat of events, we can miss or forget things. i often call my nurse for questions or clarifications.

if no other prescription, maybe the doctor wants to see if your baby can remain in remission only with a course of steroids. When is your next appointment or blood report to be done? In the case of a baby who cant speak her symptoms, Im wishing the monitoring is really tight.
 
She is still taking her other 3 meds but cut down on steroids because of the folic acid. Soon she will not take iron too cause she's getting iron transfusion.
 
Agree with OP
Folic acid is given as a supplment when a child is given methotrexate .
It's nota maintence med for Ibd
 
Sorry hun, agreeing with the others...folic acid is a supplement given usually to those on Methotrexate because the Methotrexate is a folic antagonist.

Did she happen to receive an injection in the office? Would you be going back weekly for injections? Mtx can be given as an injection.
 
Her current meds are:
PrednisoLONE4ml (used to be 5ml)
ESOmeprazole 1 packet
Iron 3ml
Folic acid 1/2 tablet

Iron will be cut out soon because she is getting iron infusion. Hematologist say the infusion last about 6 wks. Her last infusion was wednesday. Doc gave her very little dose & will be getting more this coming Wednesday.

She is still bleeding very very little & her stool improved a lot!
 
Update on my baby. She is going to get iron monthly. They did add another med which I didn't know about. I even confirm with my hub asking him "doc did not presribe another med other than folic acid right? Because the doc said she gave us another one too." He said the same as me. So anyway, her new med is a compound med? My hub will pick it up & I'll let u know what's the name. My baby stop bleeding for almost 2 weeks, but she just started bleeding again on Friday. Doc wants my daughter to start on her new med asap. If she is still bleeding by Friday call them back asap.
 
My baby is taking: sulfasalazine 100mg. 2ml twice a day. Is that a maintenance drug?

Also 3 other meds.... prednisolone... used to be 5ml. Now for every 5 days doc is cutting back 1ml. So now she is only taking 1ml. After 5 days she will stop that med.

Folic acid
Nexium
 
I don't mean to contradict, but I understood from our GI that sulfasalazine (5 ASA drugs) were considered no better than an "aspirin" for Crohn's disease but very good treatment option for UC which is a different disease.
 
If you look in the forum Wiki, on sulfasalazine, you will read that it is used to treat ulcerative colitis. I would question your GI if it is the best drug for a child with Crohn's disease.
 
Oheegen,
I have to agree with what pilgrim said. Where is your daughter being treated? Is it at a small local doctor or a big university setting? I would reccomend taking her for a second opinion and trying to get seen at a university setting if there is one not to far away.
 
Hello,
I have never been on a forum but I am very scared for my son. We are in the children's hospital right now for the third time in 4 months. My 22 month old is due to start remicade infusions in a couple of days. My husband and I are just wanting to know if anyone has started remicade this young.

Our son started to have blood in his stool when I was weaning him off of breastfeeding. He was finally diagnosed with PUC after his second colonoscopy/first endoscopy. We have not been able to get it under control. He just had his 3rd blood transfusion because his iron levels keep dropping to 6.

My little man is so strong and resilient, but the long term effects of remicade scare my husband and I so much. The doctor has basically said that it is between the remicade and surgery, so we will start the remicade.
Any experiences or thoughts would he so appreciated.
 
My kiddo started remicade at 8 years old
No issues

Sorry to hear about your little one

Paging malgrave queen gothel farmwife izzysmom
All have young ones dx before age 5
 
Omg I'm sorry you are going through so much. I know, it was scary for us too. All u can do is be strong for your little one. So far mine is stable with her current meds. Hopefully yours will be too after the meds kicked in.

Lil Trooper Ethan's mom said:
Hello,
I have never been on a forum but I am very scared for my son. We are in the children's hospital right now for the third time in 4 months. My 22 month old is due to start remicade infusions in a couple of days. My husband and I are just wanting to know if anyone has started remicade this young.

Our son started to have blood in his stool when I was weaning him off of breastfeeding. He was finally diagnosed with PUC after his second colonoscopy/first endoscopy. We have not been able to get it under control. He just had his 3rd blood transfusion because his iron levels keep dropping to 6.

My little man is so strong and resilient, but the long term effects of remicade scare my husband and I so much. The doctor has basically said that it is between the remicade and surgery, so we will start the remicade.
Any experiences or thoughts would he so appreciated.
Click to expand...
 

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