10-year old

[heartwalker]

Hello , My daugther is diagnosed with Crohn's (seems to be from rectum to middle of large colon. Per Dr. it's a mild case . She's on ASACOL -800mg ( 2TAB) from last 3-4 days and is feeling much better - No mucus or blood now ....only couple of bowel movements a day. This started around a month ago when he took Amoxy. Is it possible that it's some sort of infection which is now looks as Crohn's? GI, who did Scope said that he's certain it's Crohn's but we are still wating for Biopsy results. What is the prognosis of this sort of Crohn's ?

 

[Jenn]

A scope can be pretty certain, but the biopsy would be definitive. Sometimes Crohn's can be triggered after antibiotic use, I think. So sorry to hear about your daughter. I hope she continues to feel well on the ASACOL for a long time. Every person is different, but having any Crohn's means a roller-coaster ride - good days, bad days, successes and failures. Hang in there!

 

[heartwalker]

Thanks Jenn. I know that it varies from each person but are there cases where remission can be sustained for long period with ASACOL ? Also is there a diet we can start which will help to keep this under control ?

 

[my little penguin]

:hug: everyone is different.
I would really wait for the biopsies.
We were told with our 2nd scope DS was normal - no issues- biopsies confirmed a lot of inflammation and crohn's.
3rd scope we were told he is flaring it looks bad but biopsies results were back to near normal.

Diet- mainly avoid popcorn , nuts, beans, raw vegetables, things with skins unless they are peeled, and seeds.

All other diets are individual and some help and some don't depends on the kiddo.

Asacol or 5ASA's can help some for a very long time if your lucky.

We were not but hopefully you will be.

 

[Sascot]

Hi, welcome to the forum. I hope the Asacol works great! We have no experience with that, so no advice sorry. As for diet - we were told to let my son eat what he wants, but I avoid popcorn, cook all his veg and peel any fruit. Good luck with everything.

 

[heartwalker]

:hug: everyone is different.
I would really wait for the biopsies.
We were told with our 2nd scope DS was normal - no issues- biopsies confirmed a lot of inflammation and crohn's.
3rd scope we were told he is flaring it looks bad but biopsies results were back to near normal.

Diet- mainly avoid popcorn , nuts, beans, raw vegetables, things with skins unless they are peeled, and seeds.

All other diets are individual and some help and some don't depends on the kiddo.

Asacol or 5ASA's can help some for a very long time if your lucky.

We were not but hopefully you will be.

I guess then biopsy can be even deceiving ?

 

[my little penguin]

biopsies - tell what is really going on.
The visual scope can "look" inflamed but not be really inflamed.
That is why its important to see the biopsies.
They can tell if the inflammation is chronic or acute or both.

 

[DustyKat]

Hi heartwalker and :welcome:

I'm sorry to hear about your daughter...:hug:

At this early stage there could be the possibility of it being something else but the biopsy results will be the thing that will hopefully give you more solid answers. For most people they do tell what is going on and they remain the gold standard for diagnosing IBD. My own son had conflicting results with pathology but the doctor and surgeon diagnosed it on what they saw, plus having another child with Crohn's I knew it was that.

It is difficult to predict what course your daughter's disease, if she has Crohn's, will take but for some the 5ASA's are indeed successful for very extended periods of time and I surely hope your daughter is one of them!

Good luck hun and let us know how you get on with the biopsy results.

Dusty. xxx

 

[Twiggy930]

Hi Heartwalker,

Just wanted to drop by and say hi. I also have a 10 year old who was diagnosed with Crohn's earlier this year. I'm glad to hear the Asacol is working well and giving your daughter some relief. I hope you get the biopsy results back soon and have some solid answers to work with.

 

[heartwalker]

Thanks for your support. I was wondring if there are kids living normal life for extended period without flares ?

 

[Twiggy930]

There are definitely people who go years between flares. There are even some people that only ever have 1 flare! I am not aware of any accurate predictors of disease progression. This disease has many grey areas that us parents find frustrating!

 

[heartwalker]

There are definitely people who go years between flares. There are even some people that only ever have 1 flare! I am not aware of any accurate predictors of disease progression. This disease has many grey areas that us parents find frustrating!

In your experience so far do you think there is a way to stop flare up ?

 

[DustyKat]

Both of my children are on Azathioprine and they are both in remission and living life to the full...my daughter has will be in remission for 6 years next month and my son has been in remission for 15 months.

My daughter has made significant changes to her diet over the past two years. Has this had an effect on the progression of her disease? I don't know but it would nice to think it had. I personally don't think diet causes Crohn's and I don't know if it prevents flares. I think keeping a food diary is a good idea so you can remove known food triggers from her diet and I guess it goes without saying that eating healthily can only be of benefit...the less processed food the better. Fresh is best and organic where possible.

My daughters diet would not be suitable for a 10 year old as it is too restrictive for a growing child.

Dusty. xxx

 

[nevilletanner]

Hi,

I also take asacol and it works wonders with me, the only thing that triggers the crohns for me is certain foods, i am not going to say what they are as every person is totally different in what affects them.

I would think about starting up a food diary so you can work out what food/drinks triggers your child, the warning signs for food usually happen the following day - say if i eat beef on monday then i will get pain and the big D on tuesday although it could also start on the same day.

At least with a food diary you can pretty much work out what should be excluded from his food, as a general rule its usually high fibre food that starts our pain off although this does not apply to every one.

all the best

N.

 

[Twiggy930]

Generally prednisone or enteral nutrition are used to stop flares and keep inflammation under control until the maintenance meds (5-ASAs, azathioprine, methotrexate, etc.) have time to work. Has your daughter been given anything aside from the Asacol? If the inflammation was very mild perhaps she doesn't need anything else but if she is still being troubled by symptoms then maybe it is worth looking into either pred or EN to knock the inflammation down quickly and then give the Asacol a chance to work.

I highly recommend enteral nutrition (EN). It is a great and safe way to bring inflammation under control and it provides excellent, easily absorbed, nutrition. My son did a 6 week course of exclusive enteral nutrition and it was beneficial. Check out the EN subforum and there is also a Kids on EN thread in the Parent's subforum that has lots of good info.

 

[heartwalker]

only thing she is given so far is ASACOL -800Mg. Also they have given prednisone as a back up. She was on Flagyl -1000mg per day for 10 days before the scope. Since her symptoms seems to be under control .......only 2 BM a day , no blood or mucus and she's eating fine there seems to be no need to start Pred. at this point. She's also taking ENSURE , Folic Acid, Vitamin d (liquid). Also ...........can one anyone tell us what should we specifically look for in biopsy report to confirm that it's Crohn's or not ?

Thanks for all your support and suggestions.

 

[DustyKat]

The conclusion of the report should say if what they find is indicative of Crohn's or not. The gold standard box ticker is the presence of granuloma's, it was an absence of these that had pathology stating there was no convincing evidence of Crohn's with Matt. Wouldn't you know it, not everyone with Crohn's has granuloma's!

Dusty. xxx

 

[heartwalker]

Looking back..... as this was her first flare and we had no clue that she has IBD. ........ She had mild temprature, her ankle was swollen for couple of days and then suddenly it got better along with her having D with blood /mucus . Still she was able to go to school except may be a day when she had 10 BM. Is it pretty normal in flare up and that what we should except everytime there is one or there is something else to look for ?

 

[DustyKat]

Flares will vary in intensity so they may not present the same way every time. It is certainly not unusual though for symptoms to appear and then ease off, then intensify again, ease off...sort of cycle. I think one of the most useful things you can do when your child is flaring or you are unsure is to keep a diary, it is so much easier to track trends that way...

http://www.crohnsforum.com/wiki/Diary-Inclusions

...it is also helpful in gauging response to treatment.

Dusty. xxx

 

[gabby'smum]

My daughter was 11 when she first showed symptoms and after 6 months of being ill was diagnosed with Crohns. After 6 months of steroids, immuno suppressants and the like, still being symptomatic, she was put on Remicade. For 18 months she had no symptoms!!!
Unfortunately she had break though flare up mid cycle and has developed lupus like symptoms so off the remicade.
The GI wants to put her on Humira. She is 14 next week.
Does any one have any experience with Humira in children?

 

[afidz]

Hi heartwalker. In reading all your comments it seems like your main concerns are diet and how to handle flare ups. When I was diagnosed the first thing I did was see a dietician, and she was extremly helpful and pointed me in the right direction. Like what was said above, everybody can or can't handle different things so keeping a food diary as well would be helpful. as far as flare ups you kinda have to take them as they come. I eat alot of yogurt when I start to flare because the probiotics seem to help. You, your daughter and your doctor need to keep an open line of communication, and since your daughter is 10 she will probably be uncomfortable talking about what is going on, so it might be difficult in the beginning. Make sure you find GI that you are totally comfortable with. And don't be afraid to ask any and all questions. Crohn's is a confusing disease especially because not one person is the same. Sorry if I blabbered my thoughts kinda ran away with me. Hope this helps!

 

[afidz]

My daughter was 11 when she first showed symptoms and after 6 months of being ill was diagnosed with Crohns. After 6 months of steroids, immuno suppressants and the like, still being symptomatic, she was put on Remicade. For 18 months she had no symptoms!!!
Unfortunately she had break though flare up mid cycle and has developed lupus like symptoms so off the remicade.
The GI wants to put her on Humira. She is 14 next week.
Does any one have any experience with Humira in children?

I was on Humira at 18 and it did wonders for me, it also helped with the "crohn's arthritis" I was experiencing I started feeling better I would say about a month or so after i started. Because Humira is still very new to the public they are still doing studies on it, I joined a study that all i had to do was fill out a paper stating how I was feeling and I only had to pay 5 dollars a month. Maybe you can do something like that for your daughter?

 

[LilyRose]

I am sorry to hear about your daughter. I hope that the biopsiees give you some clear answers, and that the medication helps her stay happy and healthy for a long time.

I know I find it hard when the doctors can't tell me what will happen in the future. I know not everyone has severe disease, and i take heart that there are lots of people out there enjoyiong life even with crohns.

Let us know how you go with the results, and how your daughter is going.

Take care,
LilyRose

 

[Jenn]

My 10-year old son has been on Humira since Feb and it's going great. We had to postpone one dose last month to help get him over a pinkeye virus. His protein was also low in that time, so we are in the middle of retesting him a bunch. Might have to increase his dosage, he's right at the weight limit for the pediatric dose. The loading doses were a bit of a shock, we use the syringe now, not the epipen and ice up his thigh beforehand. Sometimes the sub-q shots go easily and other times not so well - I freaked 2 weeks ago when he was bleeding/bruising pretty good (I give them to him). Never a dull moment!

 

[momoftwinboys]

Welcome to the forum, sorry to hear about your daughter. My son was dx at ten last October. It is a lousy disease cuz even when they are doing well you worry about what is around the corner. I am afraid to say anything to anger the crohns gods ...fingers and everything crossed. My son has maintained a pretty normal life. He missed school here and there for appts and a cold here and there. We have found his bowels sometimes start to misbehave when he is extra tired. Sleepovers, early early morning hunting trips, playing 6 flag football games back to back in a tournameNt. Etc. He eats a regular diet except if something really does not appeal to him , we will offer peanut butter and jelly. We include boost and carnation instant breakfast for additional calories and nutrients our gi clinic is not big on EN Got a cool response when i brought it up We tell him to trust what his body is telling him. It is not all roses we have had a few small bumps in the road but ok overall He has an identical twin who is 20 lbs heavier and prob an inch taller so he is not growing as fast as brother. I am looking into paleo diet type of eating for whole family and will make small changes as we go.
Good luck with your girl

 

[heartwalker]

Just wondering ............Are there kids out there who are able to live full and productive life as adults when Crohn's strikes them so early on ?

 

[Sascot]

I wonder the same thing myself. I am assuming/hoping that if we can get the Crohn's under control while they are young - they have a good chance of continuing to be well. I know someone with an uncle who is now 70 yrs old. I believe he's had a few flares but managed to live a good life.

 

[crohnsinct]

I am sure of it! There are many of them here on the forum. They don't live your average life but definitely full and productive!

O's swim coach has a 91 year old aunt on Remicade...he says she is a fire cracker and if you didn't know she was 91 or had Crohns you would never suspect it.

 

[Twiggy930]

My mother-in-law knows someone who is in their 70s and was diagnosed at 19 but had symptoms before that!

I have every confidence that my son will lead a more or less normal life. He will just need to pay a bit more attention to his health.

 

[heartwalker]

So the biopsy results came back and they are calling it indetermined - IBD. Biopsy is not able to confirm if it's Crohn's or UC. they are calling it moderate chronic active colitis. Since she is responding to ASACOL - 800Mg ....GI thinks we should wait and watch