My Son, 9yo was dignosed with Crohn's disease recently

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madhav96001

madhav96001

Joined
Oct 11, 2013
Messages
33
Hi all,
We stay in Singapore!!
2013 July 29th was the most memorable day for our whole family as that was the first day my son, 9 years old had fever. He had fever for almost a month and nothing worked and I had no choice but to admit him in the hospital....He doesnt have any symptoms except fever, no tummy pain..no weight loss etc(he was skinny from childhood) strangely...the fever strikes only in the evenings(5-8pm). Aug 22nd he was admitted in the hospital and the doctors monitored him till 28th and literally no medication given and carried out one FBC. I was pissed off and took him back home to monitor that temperature our self. 28th Aug fever strikes again 38.4, admitted immediately...Hmmmm now they started all kinds of tests, all are negative but inflammatory markers are up in the reports but not sure about the origin....Finally on 3rd Sep we went for endoscopy and colonscopy and finally diagnosed with crohn's disease...damn, moderate to severe range.

we started modulen diet on 4th Sep...so far no fever and he shows some weight gain.
he is going to school and as active as few months ago
now on mesalazine 3 times a day and on modulen diet(300ml water+10scoops of modulen) 6 -7 times a day at 3hr interval(via NG tube). planning to start azathioprene soon, may be next week...

I have 2 questions

apart from frequent blood tests,
how do I know If I have a flare up or an incompatible food, as my son doesn't have any symptoms of intolerance so far.....

is azathioprene safe ?


Thanks for reading our story and appreciate your help:ghug:
madhav
 
I hope that your son does not suffer too much! ?! wish you the best.
Our thoughts are with you and your family at this time
 
Madhav, Welcome to the forum. I'm sorry you had to find us though. You have found an amazing support group! I have a 12 year old daughter who was diagnosed with Crohn's in 2009 and then the diagnosis was changed to Ulcerative Colitis in 2012. I still feel it is crohn's.
My recommendation would be to start keeping a journal. It's a bit overwhelming at first, but will become second nature. Keep track of everything.. anything that goes into his mouth, any fevers, any kind of stomach pain, diarrheah or constipation, anything that leaves him feeling not well. When you are monitoring pain, try to get him to use a pain scale. 1 being the least amount of pain 10 being the most pain you have ever felt. Keep track of his bowel movements... amount, frequency, colour, and if they look funny like oily or bubbles around them etc. This is a great chart to use. My GI and pediatrician use it http://www.sthk.nhs.uk/library/documents/stoolchart.pdf you can just keep track of the # that the bowel movement looks most like.
You will start to notice things that bother him and can then avoid them. I hope the meds work and your son is feeling better. (((((hugs))))))
 
Last edited:
Hi and welcome! Sorry to hear about your son's diagnosis. My son also went onto the Modulen via NG tube for 8 weeks and it certainly helped with all of his symptoms! I hope your son has alot of success with it too. The medications are a difficult area. I tried for a few months not to give my son any (he was a mild case and had no symptoms for a while), but he then developed a fistula and anal abscess which required surgery and alot of recovery. I do now wonder if he had been taking the medicines whether he might have avoided all that.
My son tried the Aza (couldn't tolerate it) and now is on the 6mp (same class of drug but easier on the liver) and so far has had no side effects. It is hard to know whether it helps or not as he has no outward symptoms, but his faecal calprotectin has come down further since starting it.
I hope the meds and Modulen bring your son into remission.
 
Devynnsmom said:
Madhav, Welcome to the forum. I'm sorry you had to find us though. You have found an amazing support group! I have a 12 year old daughter who was diagnosed with Crohn's in 2009 and then the diagnosis was changed to Ulcerative Colitis in 2012. I still feel it is crohn's.
My recommendation would be to start keeping a journal. It's a bit overwhelming at first, but will become second nature. Keep track of everything.. anything that goes into his mouth, any fevers, any kind of stomach pain, diarrheah or constipation, anything that leaves him feeling not well. When you are monitoring pain, try to get him to use a pain scale. 1 being the least amount of pain 10 being the most pain you have ever felt. Keep track of his bowel movements... amount, frequency, colour, and if they look funny like oily or bubbles around them etc. This is a great chart to use. My GI and pediatrician use it you can just keep track of the # that the bowel movement looks most like.
You will start to notice things that bother him and can then avoid them. I hope the meds work and your son is feeling better. (((((hugs))))))
Click to expand...


hi Samanta,
thanks for your time caring for a reply...
we already started noticing great results from modulen diet. he is like normal now and the good thing is he is gaining weight.
we planned to take note of everything that goes in and reactions...but bowel movement chart is something new for me, convincing... Iwill do it

my question is
how do we know if he has taken any food that is not compatible for him?
because till now he didnt complain any adb. pain, difficulty in bowel movements or any other pain..
how to trace what causes flare up if flare up is found via blood test?
Thanks,,
Madhav
 
Sascot said:
Hi and welcome! Sorry to hear about your son's diagnosis. My son also went onto the Modulen via NG tube for 8 weeks and it certainly helped with all of his symptoms! I hope your son has alot of success with it too. The medications are a difficult area. I tried for a few months not to give my son any (he was a mild case and had no symptoms for a while), but he then developed a fistula and anal abscess which required surgery and alot of recovery. I do now wonder if he had been taking the medicines whether he might have avoided all that.
My son tried the Aza (couldn't tolerate it) and now is on the 6mp (same class of drug but easier on the liver) and so far has had no side effects. It is hard to know whether it helps or not as he has no outward symptoms, but his faecal calprotectin has come down further since starting it.
I hope the meds and Modulen bring your son into remission.
Click to expand...

Hi, Thanks for reply
and sorry to know that your son couldnt tolerate aza well, we have an appointment on 17th oct for an MRI to see any fistula issues or not. hope he is clean.

he doing great modulen...but I am worried about post modulen regime, a bit nervous to introduce normal diet...I dont want to see my lil kid having fever.

do you all changed any diet habits to deal with the kids having this disease, like giving up certain foods like pizzas, McD or KFC etc??

Thanks...
madhav
 
Was there some precedent for cd presenting this way that made them do the scopes? I hate to hear that he has crohns but I think you guys are very fortunate that they found it as quickly as they did with no gi symptoms! Good luck!
 
thanks Mark for wishes...
only ESR shoot up to 60, that was the only thing wrong with him...ended up took almost 2 weeks to diagnose the CD. once found, he was put on modulen diet and discharged next day.thank god so far he is doing good..
all doctors surprised with diagnosis(moderate to severe CD) without any symptoms...

Madhav

3 more days to go for MRI....nervous
 
Good luck for the MRI. As for food, it is a grey area. Our docs said to have whatever he wanted but to stop it if it caused pain. For my son we avoid popcorn, nuts and corn. I also cook all vegetables to make it easier to digest.
 
Sascot said:
Good luck for the MRI. As for food, it is a grey area. Our docs said to have whatever he wanted but to stop it if it caused pain. For my son we avoid popcorn, nuts and corn. I also cook all vegetables to make it easier to digest.
Click to expand...

thanks Sascot...that makes me feel good at least we need not eliminate all the foods...we are trying to introduce slowly.:)
 
Hi and welcome.

I'm sorry to hear his dx but I happy his symptoms so far are not bad.

Yes, diet is so individual to the person. Some with IBD can eat anything but others find food to cause problems.

All I did when my son (non-IBD'er) when introducing food is to keep it soft for a week.
 
I think if you keep a food/pain/symptom/bm journal type thing, even if you don't see what it is that is bothering him, if his doctor looked he may see something. Just make sure you really document everything. Its hard, but it will get easier.
 
Devynnsmom said:
I think if you keep a food/pain/symptom/bm journal type thing, even if you don't see what it is that is bothering him, if his doctor looked he may see something. Just make sure you really document everything. Its hard, but it will get easier.
Click to expand...
Thank you dear...:)yes, this is what we are planning to do
 
Good luck with MRI. My son was diagnosed when he was 10 years old. He is 14 now and we are currently doing a diet similar to modulen. He is doing Peptide drinks now and we just finished the second week only 4 more to go. We will slowly reintroduce food at that point and also repeat blood test to check CRP and ESR rates.
My son was on azathioprine for several years and he did really well on it.
 
Jmrogers4 said:
Good luck with MRI. My son was diagnosed when he was 10 years old. He is 14 now and we are currently doing a diet similar to modulen. He is doing Peptide drinks now and we just finished the second week only 4 more to go. We will slowly reintroduce food at that point and also repeat blood test to check CRP and ESR rates.
My son was on azathioprine for several years and he did really well on it.
Click to expand...

Hi Jacqui
thank you,

why Jack needs peptide drinks now? had CD flare up again??
good to know that your son did well with AZA, keep updating us

Madhav
 
Yes we had a flare we just couldn't seem to get back under control. I think it started with an infection he had over the summer and we just went downhill from there.
He is doing really well with the Peptide and symptoms have disappeared but of course I'm worried once we add food back in. If inflammation comes back then we may go back to azathioprine or try remicade but I'm hopefull that this will help.
One of the most important things is to keep inflammation under control especially as they are growing
 
Welcome. Madhav! Sorry your son is suffering so. My 8 yr old son was dx'd with moderate CD (mostly in his small intestine) in March. He started getting sick in Jan. Symptoms were fevers (increasing at night), night sweats, mouth ulcers, abdominal pain, and fatigue. No diarrhea, but always suffered from constipation. He was becoming anemic and was starting to lose weight.

All food bothered my son at this time. He had constant abdominal pain, which increased when eating. The pain was very bad if he had lactose, anything really sweet, or anything processed or a junk food. These foods hurt the ulcers in his mouth too, so we knew if it hurt his mouth, it would hurt his belly. As the others have mentioned, a journal is a great way to track foods and symptoms. We moved to a low residue diet, changed his milk, and otherwise stayed away from unhealthy foods.

Bloodwork, ultrasound, indium scan, MRE, and scopes were done to confirm the dx. We were given the choice of prednisone or EEN with NG tube for initial treatment. We chose prednisone, and aza (Imuran) was started. Unfortunately my son was unable to tolerate the aza (high fevers and elevated liver enzymes). The dr decided to try methotrexate injections as he thought 6 mp may cause the same reaction. My son finished his prednisone taper in Aug and is doing well.

Don't worry about the MRI. I'm sure it will go smoothly. Good luck with discovering what foods are making your son's symptoms worse. And hang in there, once treatment takes affect you'll see a great improvement in your son. Take care!
 
Jmrogers4 said:
Yes we had a flare we just couldn't seem to get back under control. I think it started with an infection he had over the summer and we just went downhill from there.
He is doing really well with the Peptide and symptoms have disappeared but of course I'm worried once we add food back in. If inflammation comes back then we may go back to azathioprine or try remicade but I'm hopefull that this will help.
One of the most important things is to keep inflammation under control especially as they are growing
Click to expand...

ya, we need to keep inflammation under control..thats why i went for modulen over steroids

lets see how it goes, :)
 
CrohnsKidMom said:
Welcome. Madhav! Sorry your son is suffering so. My 8 yr old son was dx'd with moderate CD (mostly in his small intestine) in March. He started getting sick in Jan. Symptoms were fevers (increasing at night), night sweats, mouth ulcers, abdominal pain, and fatigue. No diarrhea, but always suffered from constipation. He was becoming anemic and was starting to lose weight.

All food bothered my son at this time. He had constant abdominal pain, which increased when eating. The pain was very bad if he had lactose, anything really sweet, or anything processed or a junk food. These foods hurt the ulcers in his mouth too, so we knew if it hurt his mouth, it would hurt his belly. As the others have mentioned, a journal is a great way to track foods and symptoms. We moved to a low residue diet, changed his milk, and otherwise stayed away from unhealthy foods.

Bloodwork, ultrasound, indium scan, MRE, and scopes were done to confirm the dx. We were given the choice of prednisone or EEN with NG tube for initial treatment. We chose prednisone, and aza (Imuran) was started. Unfortunately my son was unable to tolerate the aza (high fevers and elevated liver enzymes). The dr decided to try methotrexate injections as he thought 6 mp may cause the same reaction. My son finished his prednisone taper in Aug and is doing well.

Don't worry about the MRI. I'm sure it will go smoothly. Good luck with discovering what foods are making your son's symptoms worse. And hang in there, once treatment takes affect you'll see a great improvement in your son. Take care!
Click to expand...

great to know your son is doing well now, how long he was on prednisone?
my worry is all about symptoms only, he didn't develop any symptoms until the recent fever at nights episode, no diarrhea, no tummy pain no constipation nothing at all, so once we introduce food, if there is any food that is not suitable for him, how do I know, without any symptoms?

thanks, I wish MRI will be clean too..

Madhav
 
My son was on prednisone for 5 months-2months longer than hoped. As the aza did not work for him, that delayed him getting off of it. Our GI I also does a very slow taper. I can't give you great advice about introducing food, as my son didn't do EEN, but we gave him easily digestible food during his flare, low fibre, soft cooked veggies, no popcorn or nuts, easy on fruits with seeds. Other than adding in a bit more fibre, we stick to the same kind of diet even though they think he is in remission. We eat as healthy as possible, and stay away from junk food or fast foods. I know, there is so much to think and worry about!
 
MRI done on 17th, scheduled 45min MRI took 2 hours, followed by an ultrasound,
It seems something wrong with his intestines....need to wait for 2 more days to see doctor(24th). nervous, anxious, a bit of scared...and what not.
His appetite getting worse, last month every 2-3 hours he felt hungry, now after 4 hrs also not hungry. but only good thing I can see is he gained weight from 22 to 29kg in last 6-7weeks of modulen.

after reading posts from members those are having more than one kid with CD or UC, I have another headache, my 4yo+ daughter.

what is the chance of getting CD for sibling?
 
:ghug:..Waiting for the results is always the hard part but try not to worry as things might not be as bad as you think.

Good luck with the results.
 
Good luck for the results, hope it's not too bad. I also worried about my daughter getting Crohn's - there is a risk that siblings can have it too, but so far so good. The one good thing about having one kid with Crohn's - they tend to listen to you more if you are worried about the second child.
 
yesterday met Infectious diseases doctor, who was the first to suspect my son's crohn's disease and suggested colonoscopy...
relaxed to know that so far he didn't have any other problems. all the results are negative
only waiting for TB results, but I am not worried about it as 72hr patch test,blood test and x-ray are clean for TB.
still waiting for MRI and ultrasound results.:rof:
next appointment with GI is on 28th....hope the results will be out by then
introducing foods from 28th onwards....
2 whole months with out food, don't underestimate kids:ybatty:
mission accomplished, he crossed 29kg mark(90%), now he is 29.3 hopefully he will reach 30 kg(ideal) within next 3 days ::fingers crossed::.
 
hohohooo..
just met our doc to know that his MRI and ultrasound are clean....
so relaxed.
Rx AZA from tonight daily 50mg
now he is 29.6, just 400g less than his ideal weight but doc is satisfied with his growth so tomorrow he is going to have his white bread slice with jam:)
 
Will probably be the best white bread with jam he has ever had :)
Glad results were good, hope he continues to improve.
 
thanks all for the support..

this is what we have been told to follow for one week(or two weeks)
much awaited to see:)
this is designed for asian(indian) style of food, few may be wondering what is idly and dosa (can google for it)

he had his first slice of bread today after modulen 250ml(reduced from 10scoops to 6scoops), unable to complete as he feels full.

advised to go for bloods in 2, 4 and 6 weeks time to see how he is doing with AZA.
keep you posted...
 

Attachments

  • food reintro.pdf
    240.1 KB
That's awesome, I love how they have written out a menu for you.
We introduced chicken broth, jello and applesauce tonight - he had a smile on his face the entire time he was eating. I was wondering how long till I gave him some stewed chicken so your menu has helped there. Thank you for posting. Hope food reintroduction goes well.
 
Hi all,
Did anyone of you claim modulen ibd under insurance? I can get a letter from our doc to produce that he is on EEN. Understand different ins companies in different countries operate differently. Just curious....
 
Yes as sole source of nutrition and medical necessity insurance covered but it did take phone calls from me, the doctor and our durable medical supply company that supplied the formula
 
Hi madhav,

Sorry for the late reply and so very sorry to hear that your boy has Crohn's. :( How is he doing with the reintroduction of food?

I have two children and they both have Crohn's. Most literature states that if you have a sibling with IBD then you have 30% chance of also developing it. Guess we lucked out on that one! The disease my two have mirrors each other so in our case I am really hard pushed not to believe that a genetic mutation is the big player here.
Generally though...it is so hard to say as there are loads of kids and adults here that are the only one in the family to have it.

Hope your lad is picking up. :ghug:

Dusty. xxx
 
Hi Dusty,
Thanks for the reply...
The luck you(no one infact) didnt want :(

Generally though...it is so hard to say as there are loads of kids and adults here that are the only one in the family to have it.

too good to hear this...:)
 
Hi Madhav,

We live in Singapore too and there is a Crohn's and Colitis society of Singapore. It would be great if you can get in touch with the members and parents. Please do look them up on google as I am unable to post the link here it is - ibd.org.sg

Also a facebook page too for members - hope you can look that up too. I was trying to send you a Private message but unable to do so.
 
Hi hope4kids

You have to have 10 post to post a link.
I'll be happy to do it for you.

Press HERE

Madhav,
I hope all is going well.
HUGS
 
hope4kids said:
Hi Madhav,

We live in Singapore too and there is a Crohn's and Colitis society of Singapore. It would be great if you can get in touch with the members and parents. Please do look them up on google as I am unable to post the link here it is - ibd.org.sg

Also a facebook page too for members - hope you can look that up too. I was trying to send you a Private message but unable to do so.
Click to expand...

hi, thanks for the concern and info, I heard about this society from our GI. we are still in CD trance and I really need a break to finish my pending projects.
I will look out for that society in Jan'2014

Thanks again.
Madhav
 
Farmwife said:
Hi hope4kids

You have to have 10 post to post a link.
I'll be happy to do it for you.

Press HERE

Madhav,
I hope all is going well.
HUGS
Click to expand...

Hi FW,

so far so good, everything looks good so far
AZA started a month ago and blood reports and LFT were good two weeks ago and he is in the laboratory now for bloods and LFT. :):)
 
madhav96001 said:
hi, thanks for the concern and info, I heard about this society from our GI. we are still in CD trance and I really need a break to finish my pending projects.
I will look out for that society in Jan'2014

Thanks again.
Madhav
Click to expand...

I totally understand that. Give yourself all the time you need. We've all been there.
 

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