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Crohn's Disease Forum » Parents of Kids with IBD » Newly Diagnosed 9yrs old boy


 
01-30-2017, 11:12 PM   #1
TheCrohns
 
Join Date: Jan 2017
Newly Diagnosed 9yrs old boy

Hi were new here...
My son was diagnosed on the 17th January 2017 with crohn's disease after 1+ year of wondering what he have.

We rushed him to the hospital because he had a "boil" with open up and puss was oozing out of it, we didnt know it even existed or that its there.

Prior to the he had been complaining of uncomfortable feeling in his backside and its pain to the touch so we made sure to wash him gently with water after his visit to the toilet.
We thought its just a reaction to gluten since he had been eating outside food for the past few weeks. (we put him in gluten free diet and his diarrhea subsided thats for the whole of 2016)

We spent 10days in the hospital and after numerous examination, blood testing, colonoscopy, endoscopy and a detailed MRI... he is diagnosed with crohns with inflammation in the large intestines and stomach and perianal ulcer.

the MRI results havent come out so we dont know the extent of the inflammation and wether his small intestines is also affected or if he have other ulcers anywhere else.

Now he is on liquid diet (modulen) for 8 weeks
pentasa for 3x a day and antibiotic 3x a day
until he gets his chickenpox vaccine doctor said have to take the above medication before starting on the auto immune suppresant (which im not to keen about and researching about it)

few days after discharge he is complaining of heartburn and has problem passing motion because of the extreme pain he is going thru....
and he seems to be developing a skin tag around his anus and i think this is the one causing the pain and he complains that it is extremely itchy
I can see that the flesh is raw, the last time he pass motion there is a red blood when cleaning him up but when i let him lie down on the bed to check i cant seem to figure out where the bleeding is coming from wether from the anus, the skin tag or maybe a fissure somewhere or from the open wound (ulcer that burst) on top of his anus....

is there anybody have the same experience who can give me advice...
or any remedy for the pain from the skin tag

we will be seeing the surgeon team later today because of this

its been a roller coaster ride for me and husband.
its really hard to see your child go thru pain

thanks in advance
01-31-2017, 02:22 AM   #2
Sascot
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Hi and welcome. My son also struggled with a peri anal abscess which ended up with a fistula. He had lots of antibiotics before it settled then surgery on the fistula. Thankfully that cleared up. We also did the Modulen but I've no experience with heartburn.
Unfortunately immunosuppressants are a necessary evil for us. It took me 6 months to agree to try But the calprotectin kept going up so we had to. It's been 5 years now and it seems to keep things in check. Good luck with all the treatments, hope you get remission as soon as possible
01-31-2017, 12:18 PM   #3
pdx
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I'm sorry that your son is having to deal with so much right now. I hope that the Modulen diet starts giving him some relief from some of his symptoms soon.

I agree with Sascot that immunosuppressant drugs are usually a necessary evil with Crohn's in kids. Yes, the possible side effects are a risk, but untreated Crohn's seemed far riskier to us. My daughter has been on Remicade and methotrexate for several years, thus far with minimal side effects.

What medications are your doctors recommending for your son's long-term treatment?

Hang in there. The first 6 months after diagnosis are hard, but it will get better.
__________________
Daughter E (15) dx with Crohn's 12/18/14 at age 12

Current treatment:

Remicade started 12/24/14 (currently on 9 mg/kg every 6 weeks)
Oral methotrexate restarted 12/2/16 (15 mg weekly)
vitamin D, folic acid, multivitamin, Prozac

Past Treatment
90% EN via NG tube 2/9/15 - 4/2/15
50% EN via NG tube 4/3/15 - 4/18/15
Supplemental EN via NG tube 5/7/15-6/19/15
Budesonide 3/3/15-6/30/15
Oral methotrexate 3/13/15 - 5/14/16 (15 mg weekly)
Topical clobetasol for Remicade-induced psoriasis
01-31-2017, 04:53 PM   #4
Jenn
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Welcome and I'm sorry to hear of your son's dx. My son presented similarly at the same age, but is now 15 and in remission on Humira. Best of luck to you, it's a rough road, hang in there!
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Jennifer ~ son dx at age 8, Sep 2010
currently on Humira, Feb 2012+, MTX (15mg) Aug 2017+, folic acid
past use: 6mp for Sep 2010-Apr 2011 (not effective enough), then Remicade April 2011-Dec 2011 (built antibodies); additional 6MP Aug 2012-Sep 2013; Periactin for appetite Sep 2010-Sep 2013
other: Centrum chewable multi; calcium-vitD;
Derma-Smoothe for psoriasis rashes; Alrex, Zaditor eye drops for vernal conjunctivitis; history of asthma, ear infections
02-01-2017, 01:19 PM   #5
Tesscorm
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I'm sorry that you and your family are dealing with this diagnosis. But, as was said above, the first few months are the toughest, until treatment kicks in and begins to work.

It's been a number of years since my son was diagnosed but he did have some pain from fissures at the beginning... sitz baths with epsom salt and penaten cream helped.

Re the heartburn - my son also had heartburn prior to being diagnosed and he was prescribed Nexium. I think the cause of his pre-diagnosis heartburn was resolved with the nexium and/or treatment but, then he began to have heartburn from using an NG tube. Does your son drink the modulen or is it ingested through an NG tube? If thru the tube, this might be contributing/causing the heartburn. What we were told is that when the tube is in place, it doesn't allow the flap between the stomach and esophagus to completely close and this allows acid to leak into the esophagus. As my son ingested his formula overnight, we elevated the head of the bed to help a bit.

Later in his treatment, my son moved to partial liquid diet. At that time, he was only ingesting the formula 5 nights a week. The explanation above matched his symptoms as he would have heartburn only on the days after ingesting the formula overnight. On those days, he continued with nexium.

Please note that long term use of nexium can also have some long term side effects. However, my son used nexium for two years without a problem.

Good luck, I hope you begin to see improvement soon.
__________________
Tess, mom to S, 22
Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
02-01-2017, 03:23 PM   #6
pooksmom
 
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Location: Virginia
Hi , I am new here to My 11 yr son was dX 12/20.16 . His issues came to our attention with the pain in his backside. His doctor put him on Prilosec to help with the acid in his bile. It seemed to work after a week or so ,in the meantime I found that Dermoplast really helped with the pain he was having on the short term. It worked way better than the prescription cream did ,and it is over the counter. I don't know why the doctor did not suggest it. I thought to use it because it was given to me once after having my first baby. I told the doctor I was using it and she said it was fine , but check with your doctor first.
02-01-2017, 08:46 PM   #7
my little penguin
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Pooksmom what is your Ds dx? And what meds is he on ??

Thecrohns we have all been there at dx
I didn't want Ds to take anything
I cried a lot
He was only 7
I read the scary side effects and was very determined that he shouldn't take these meds since he looked ok on the outside (in pain but ok )
I came here and others explained
Your intestines are like a garden hose very flexible and let things move through as they should
Ibd cause cycles of inflammation
This builds up "scabs" to fix it and later turns to scar tissue
The scar tissue is hard (think pvc pipe ) and not flexible so
You can end up with fistulas (extremely thin tunnels of make shift intestine that GI from the intestine to places it doesn't belong -like the skin /stomach etc...)
Or strictures (the scar tissues narrows the hard pvc pipe too much )
Or obstructions (complete blockage )where intestines can rupture and cause sepsis

Crohns wil cause growth delays of not treated properly
Infections and other things

I only say this so you understand while the drugs have risks of potential side effects
Crohns has a known history of progression
75% of kids dx have surgery within 5 years

So finally after years of only having prednisone as an option (not good long term for anyone )
They know have immunosuppressants such as mtx aza and 6-mp
Ds has taken two out of the three - of enough by themselves for him
Biologics are even scarier on paper but
Less side effects for my kiddo and what he needed

He has had Crohns for 6 years and been on biologics plus immunosuppressants for close to 5 years

Crohns wise things are very good

He also supplements with formula so his growth remains on track with his peers

It is scary but seeing your kid grow and thrive is well worth it

Saving as much of the intestine by keeping it healthy for as long as possible is my goal


So far so good
Since biologics his scopes look pretty

Good luck
And lots of hugs
We have all been there
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DS - -Crohn's -Stelara
02-02-2017, 04:56 AM   #8
pooksmom
 
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I posted the same message twice and do not know how to delete. Sorry.
02-02-2017, 04:56 AM   #9
pooksmom
 
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My little penguin,

His Dx's is crohns and he is on Pentasa ,and predisone along with the prilosec. He is still having painful cramps and bloodly stools and now consitipation , The fissure has improved.
02-02-2017, 09:28 AM   #10
TheCrohns
 
Join Date: Jan 2017
Hello everybody
Thank you so much for all the very important information... we're new to this And Been reading a lot... we just got discharge from the hospital today so sorry for late reply there's not good signal there.

My son is put in liquid (modulen) diet for 8weeks
Taking pentasa 3x a day for two weeks until we see our doctor on the 14 again
And we are taking flagyl 3x a day for another week

The autoimmune suppressant will start after they check if he got the antibody (chickenpox)

Now I'm more inform with all the information you all shared.. I just need my husband to read all your post to get him to understand it as well...

Thank you again 🙏🏼

Oh yeah he is drinking the modulen (it was a relief knowing that he like the taste) but he is starting to hate it now (we are on the second week already)
02-02-2017, 09:33 AM   #11
my little penguin
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Bribery
Lots of bribes
We and grandparents paid Ds by the week when he was een (formula only )

Good luck
02-02-2017, 09:46 AM   #12
TheCrohns
 
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😬 guilty here we do that too 😬😬😬
02-02-2017, 11:29 AM   #13
Maya142
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Yup, we bribed too. It also helped if the formula was cold and if we used a straw (then it bypasses some of the taste buds).

Good luck!!
__________________
Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
02-02-2017, 11:44 PM   #14
TheCrohns
 
Join Date: Jan 2017
we started having problem with taking the modulen starting his 2nd week, even bribery doesnt seem to work anymore because everytime he starts drinking it he will have gas pain... could the pain be from pentasa? or he is not drinking enough...
02-03-2017, 06:10 AM   #15
CYY
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Hello everybody
Thank you so much for all the very important information... we're new to this And Been reading a lot... we just got discharge from the hospital today so sorry for late reply there's not good signal there.

My son is put in liquid (modulen) diet for 8weeks
Taking pentasa 3x a day for two weeks until we see our doctor on the 14 again
And we are taking flagyl 3x a day for another week

The autoimmune suppressant will start after they check if he got the antibody (chickenpox)

Now I'm more inform with all the information you all shared.. I just need my husband to read all your post to get him to understand it as well...

Thank you again 🙏🏼

Oh yeah he is drinking the modulen (it was a relief knowing that he like the taste) but he is starting to hate it now (we are on the second week already)
Hello, welcome to the forum!

Although I'm not a parent myself, I just wanted to let you know that I'm currently on Modulen (2ish weeks more to go), I've recently got the chickenpox booster vaccine, and I'll be starting Azathioprine in about two weeks' time too. Your son is definitely not alone.

Modulen is tough, no doubt. I hate every drop of it too. After a couple of weeks, it does start to take a toll on one's psychological health, be it the patient or the people around him. It takes a bucketful of perseverance, a sackful of determination and a hell lot of grit to see it through. EEN is not a one-man show. Your son requires loads of encouragement from the people around him during these 8 weeks. Food may be a sensitive topic at this point in time.

Is your son allowed to have any artificial flavourings like Nesquik in his Modulen? That may add some variety to drinking nothing but formula milk for the next few weeks. Maybe you'd want to talk to the doctor about it?

There's so much more I want to share, but it's just too much to type at one go. Feel free to give me a shout whenever you feel like it. My inbox will always open to your messages. Please convey my words of encouragement to your son. I hope he achieves remission soon! (づ。◕‿‿◕。)づ
__________________
Hi, I'm CYY! (✿◠‿◠)/
Age: 17
Diagnosed with: Crohn's Disease, Supraventricular Tachycardia, Chronic Asthma
Currently on: Methotrexate 20mg/week, Folic Acid 5mg, Atenolol 50mg, Modulen IBD (10 scoops), Ondansetron (PRN), Debridat 100mg (PRN), Anarex (PRN), Ventolin (PRN)
Previously on: Azathioprine 50mg, Propanolol 25mg, Seretide
02-03-2017, 06:28 AM   #16
GI Jane
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Some of the things I've used for pain around the anus: Tucks wipes, Desitin, A&D, Baby Wipes Natural with Aloe, Ice Cold Wash Cloth between cheeks for relief. If you can afford look into a Bidet, we are getting one soon. My sister has one it washes and dries, gives the bum a needed rest from toilet paper.

Liquid diets get hard. Make popsicles out of soups you get tired of sweet. You miss the chewing more than you'd think so gum helps.

Thoughts and prayers.
02-03-2017, 08:15 AM   #17
my little penguin
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GI Jane
Liquid diets are not the same as een
Een (exclusive enteral nutrition -is formula only and no food)
It's used with kids to induce remission without steroids


Most do not permit gum or candy
Just water and ice
02-03-2017, 09:31 AM   #18
Farmwife
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Hi and a late welcome.

My girl was 3 at dx and had done EEN /EN since then.
She's also been on drugs for most this time.
Remicade had been wonderful and no side effects.

As for bribery. ........
Ya, I can't even number how many beanie babies she had now. Lol
She's 8 now, so her taste is getting more expensive.
__________________
I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
02-03-2017, 09:37 AM   #19
Maya142
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we started having problem with taking the modulen starting his 2nd week, even bribery doesnt seem to work anymore because everytime he starts drinking it he will have gas pain... could the pain be from pentasa? or he is not drinking enough...
Sometimes drinking slowly can help - sipping, instead of drinking the formula quickly. If my daughter tried to drink it quickly to get it over with, she'd get very nauseous.
02-03-2017, 11:16 AM   #20
GI Jane
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Wow I'm sorry that's really sad I had no idea. Not even gum that's too bad. Lots of video games, fruit Ninja challenges against each other kids love competition and great distraction. When I was on the clear liquid diet for awhile they allowed butterscotch candies to suck on, but the sugar I know can cause some problems and the sugar free gums can cause diarrhea but not regular my GI allowed me Doublemint gum, guess I was one of the lucky ones.

Isn't there a teen or kids site on here, or maybe that's a different site might help him to "talk" to his peers.
Thoughts and prayers.
02-03-2017, 11:33 AM   #21
pdx
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we started having problem with taking the modulen starting his 2nd week, even bribery doesnt seem to work anymore because everytime he starts drinking it he will have gas pain... could the pain be from pentasa? or he is not drinking enough...
It may be that your son needs a more broken-down formula. We don't have Modulen here in the US, but I think that it is a polymeric formula, which means that the nutritional components aren't broken down (and also makes the formula taste better, so it's easier to drink).

My daughter tried polymeric formulas first, but they made her feel really sick, even when she sipped them slowly. She had to switch to a semi-elemental formula (Peptamen in her case). In semi-elemental formulas, the components are more broken down, so it's easier to digest. The problem is that they don't taste good. Some kids can still drink them, but many need to use an NG tube, so that they don't have to taste it. My daughter used a tube, and it was actually much easier than we thought it would be. The tube also feeds very slowly, which can make the formula more easily tolerated.

There are also elemental formulas, which are even more broken down and even easier to digest, but they also taste even worse.
02-03-2017, 12:16 PM   #22
my little penguin
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Modulen in the uk is similar to peptamen jr
A semi elemental formula from what I understand


ETA
I was wrong
Modulen is whole protein
Modulen IBD is a unique whole-protein, powdered formulation for for the dietary management of the active phase of Crohn’s disease to be used as a sole source of nutrition and for nutritional support during the remission phase. It is 100% casein-based, supplemented with optimal levels of lipids and carbohydrates with a low osmolality level for good tolerance and great taste.

From
https://www.nestlehealthscience.com/brands/modulen
02-03-2017, 12:25 PM   #23
Maya142
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My daughter could not tolerate polymeric or even semi-elemental formulas either. We had to go to an elemental formula - Neocate - and she was unable to drink it so we used a tube.

NG tubes really sound a lot more intimidating than they are. Some kids insert them every night and do the feed overnight and remove them in the morning. My daughter did that - so no one at school had to know. Other kids prefer to just leave them in - typically younger kids do that.

I was really surprised at how quickly my kiddo got used to the tube. The first couple nights were hard - her nose and throat were sore, but within a few days she was inserting it in 10 seconds, with no issues at all. She finally started gaining weight and had more energy and now she says having a tube is WAY better than drinking formula and she'll never go back to that!
02-09-2017, 11:37 PM   #24
TheCrohns
 
Join Date: Jan 2017
Hello Guys thank you for all the messages Ive read them all and its very helpful.

Tried to give everybody hugs, those I havent...hugs to each and every one. I appreciate all the support, the messages you post really means alot.

An update with my sons condition...

After discharge on the 2nd Feb 2017 we went home with the same medication and was given chicken pox vaccination (additional medicine is LOSEC for reflux)

we had a scare on 6th Feb 2017 because of extreme chest pain that comes and goes every 15-30seconds, he would scream in pain...

(he was having this pain since 1st feb even when we were in the hospital but not as much, his doctors prescribed Losec Mups twice a day but this didnt help at all) The doctor actually thought she gave us this medication when we were first discharge from the hospital on Jan! and telling us that we should have given the LOSEC... and I was like "what is that?"
I was angry because his pain could have been lessen if they check medications given just incase he experience stomach cramps or reflux etc... i mean im sure they have patients with the same symptom specially if you are putting a child into an 8 week liquid diet. Its frustrating you can just imagine my angry red face


so back to the 6th Feb... the losec medication is not working and aside from stomach cramps now he is having chest pain as well, we called the ambulance and he was rush to the hospital . They did an ECG and xray and everything is okay... so the emergency doctor in charge said it could be that he is having reflux and its going up making the chest contract causing the pain, because hes stomach is making adjustment to the liquid diet hence the reflux etc... so the doctor gave him magnesium carbonate and his condition subsides... less chest pain after 20mins....
So we were discharge with additional medicine (magnesium carbonate)

The next day we gave his first round of medication pentasa, flagyl, losec then after two hours we gave the magnesium carbonate!

That day we have less 70% of pain and i was so happy to see him smile again after a week in agony...
Hes drinking his modulen way better without thinking that the modulen will give him pain because after drinking the reflux will come.

With regards to his fissures, I clean it twice a day flushing, antiseptic spray, packing and cover with gauze...

He did had an inflammation again and started the signs of forming a skin tag and redness around his anus.
I tried to give him sitz bath... i boiled guava leaves and mix that with warm water and let him sit in the bathtub for 20-30mins twice a day...
the skin tag became smaller and one of ulcers the smallest close up in 3days and the redness subsided. till today im still giving him the guava sitz bath.

Guava leaves when boiled is great for sitz bath to help cure wounds, they use this for women who gave birth vaginally to help heal the wound faster (as sitz bath as well)

It works wonders.

Were ending our 3rd week of modulen, 5 more weeks to go!
we finished our last tablet of flagyl last night and only on pentasa now...
plus the losec and magnesium carbonate but im trying to wean him off that two meds because I think there is less reflux now and he is starting to have sharp headaches.
Our next appointment is on the 14th we have a valentines date with his doctors hahaha

he will be tested that day and another test if the chicken pox vaccination is good.

The doctors want to put him on immuno suppresants... Azathioprine
but i read about biologics and the best way to go to treat crohns??? any thoughts on this?
I mean they said that biologics has most patient have their life back more quality of life i think...
How long is this medication for (biological also called TNF) is it for lifetime?

thanks for all the informations again...

And sorry for the long update, i dont get a chance to check online so yeah

Loves and hugs!
02-10-2017, 12:58 AM   #25
pdx
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I'm glad to hear that the magnesium carbonate and sitz baths are helping. And congratulations to your son for making it through 3 weeks of Modulen!

My daughter's doctor prefers to start with biologics, so that's what we did, and I'm glad. We added an immunosuppressant (methotrexate) a few months later, which is supposed to help avoid the formation of antibodies to the biologic.

Starting with biologics is more common here in the US. Are you in the UK? If so, it seems like more doctors there start with azathioprine and only move on to biologics if that doesn't work. It also seems like doctors in Europe are more likely to stop biologics after remission is reached, whereas in the US, you tend to stay on them unless you develop antibodies. Let us know where you are located, and then hopefully someone from that area can give you more information.
02-10-2017, 01:11 AM   #26
TheCrohns
 
Join Date: Jan 2017
I'm glad to hear that the magnesium carbonate and sitz baths are helping. And congratulations to your son for making it through 3 weeks of Modulen!

My daughter's doctor prefers to start with biologics, so that's what we did, and I'm glad. We added an immunosuppressant (methotrexate) a few months later, which is supposed to help avoid the formation of antibodies to the biologic.

Starting with biologics is more common here in the US. Are you in the UK? If so, it seems like more doctors there start with azathioprine and only move on to biologics if that doesn't work. It also seems like doctors in Europe are more likely to stop biologics after remission is reached, whereas in the US, you tend to stay on them unless you develop antibodies. Let us know where you are located, and then hopefully someone from that area can give you more information.
were based in singapore, not many kids have crohns here so theres not much support (forum wise like this)

so far we saw two doctors about his diagnosis and the other one pro biologics and the other immunosuppressant azathioprine

I was reading that nowadays they start treatments from top down meaning biologics first then when it is "more in control" then they step down to immunosuppressant.

I hope you dont mind me asking... how long did you take the biologics?
I wanted to know because here in SG biologics comes with a hefty price
so at least i know what im gonna face
02-10-2017, 01:21 AM   #27
Maya142
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In the US, your child would be on biologics as long as they work. My girls have been on biologics for years - 7-8 years. They should NOT be stopped and started because your child can build up antibodies to them - and then the drug becomes less effective or stops working altogether.

The research does indicate that biologics are the most effective drugs for both inducing and maintaining remission. They are also good for kids who have delayed growth. In the US, doctors are starting to use them sooner -- for many kids, right after they are diagnosed. The thought is to get the disease under control quickly, so the child has a better chance to grow and gain weight normally.

They also lessen the chances of complications like strictures, abscesses, fistulae etc.

That said, I understand cost may be an issue.

In the US, Methotrexate is being used more and more now - I'd ask if that is an option. It is safer than Azathioprine.
02-10-2017, 01:34 AM   #28
pdx
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My daughter has been on Remicade for just over 2 years so far. Right now she gets 400mg every 6 weeks. Humira is the other common biologic used for kids with Crohns. Both Remicade and Humira are very expensive, unfortunately. Azathioprine and methotrexate are both much less expensive.

If you decide to start with an immunosuppressant alone, I agree with Maya that it's worth asking about using methotrexate.
02-10-2017, 02:06 AM   #29
TheCrohns
 
Join Date: Jan 2017
thanks pdx and maya,

will ask his doctors about the treatments on the 14th february.
I am keen on biologics because his case of crohns is diagnosed as severe and we have to pull him out of school because he have ulcers in and out the body as well as inflammations in stomach and large bowels.

we havent seen his detailed MRI results so we dont know if his small intestines is inflammed as well...

I just want my boy to be lively again, he lost so much weight its sad and heartbreaking
02-10-2017, 02:10 AM   #30
pdx
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Hope he starts feeling better really soon.
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