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3 year old son diagnosed with Crohns

Hi. My 3 year old was diagnosed with Crohns about two months ago. This is a very difficult time for my entire family. He is so little and so young and doesn't understand. At this point of course he just hates doctors because every time we see one he gets blood drawn. The doctor has diagnosed him with peri-anal Crohns (sp?), so the doctor is wanting to start Remicade infusions. After researching Remicade, I am very concerned. I have read a lot of bad reviews and a couple of good reviews for this medicine helping Crohns. If anyone has any personal experience, I would be so thankful. I just want to do what is right for my child.
 
Hi there, I am 22 years old and was diagnosed with Crohn's this past July. I also have perianal Crohn's, and have had 4 Remicade infusions so far. I have nothing bad to say about the drug. It has caused no adverse symptoms, and has even reduced the issues I have in my small bowel. In regards to my perianal symptoms, they are slightly more tricky and take some time to heal. But with the Remicade and eating appropriately I believe they will clear up soon.

I know the biologics can be scary, but I feel that the pros greatly outweigh the cons.
 
Welcome. It is not the same for everyone. I was on Remicade a few years ago. I made the mistake of stopping it because of the expense. That caused me to have a flare and I needed surgery. About seven months after the surgery, my doctor tried to restart me on the Remicade but I had developed an allergic reaction by that time. I hope the best for your son. I am going to tag Clash, my little penguin and Maya 142.
 

my little penguin

Moderator
Staff member
:Welcome:
Crohns is scary and especially for little kids
It's hard to treat and wrap around the idea of damage since it's all inside
Ds was Dx at age 7
He soon will be 13.
So I get the fear and anger and wanting to make it all better for your child

We have a parents group here
http://www.crohnsforum.com/forumdisplay.php?f=49

Come join us

As far as remicade - and risks and benefits
Doctors prescribe meds when the benefits out weigh the risks
Under treated or untreated crohns can be dealt ALOT of parents here have had their children have surgery or even the icu .

But the good is a lot have been given their kiddos lives back with biolgics including remicade .
It lets them heal and grow and not be in pain so they can be kids again

Every single med you have ever given your child has risks the difference is no one is sitting you down to say
Your infant has a high fever you give infant Tylenol
But there is a risk of liver damage , Steven Johnson syndrome or even death (extremely low risk ) same can be said for amoxicillin etc....

I am not saying that I easily jumped on the drug bandwagon or even the remicade bandwagon, it took a lot of reading here to fully understand that these meds are the best shot kids have right now at keeping their intestine healthy for as long as possible .

I felt physically ill when ds got his first remicade infusion
But then he started to get better and I realized just how sick he was .


As parents we take risks every single day
For better quality of life
The stats for death for kids under 14 in the US

By car 1 in 250
Be drowning -1 in 1000

The average person on the street of having t call lymphoma
2 in 10000

A person with ibd getting T cell lymphoma when on the combination of immunosuppressants and biolgics 6 in 10000


Most insurance though has restricted more expensive meds and may make your child "fail" each class of the lower meds before they will even cover remicade
And by fail I mean months of 5-asa , 6-mp and methotrexate.
It took over a year before Ds was covered for remicade
A year of being sick and getting worse to prove the other meds didn't work .


Really hope remicade is approved and your child gets to be a kid again soon


Realize remicade take 6-8 weeks to work
Methotrexate takes 8-12 weeks to work
6-mp /Aza takes 3-4 months to work

5-asa (pentasa etc..) are not approved or recommended for monotherapy for crohns .
Most studies show it's not much better than a placebo
 

my little penguin

Moderator
Staff member
Aggressive therapy aimed at minimizing the inflammatory process, maximizing nutrition, and ensuring physical activity is the cornerstone of a suc- cessful treatment regimen. Anti-TNF-alpha therapy is to date, the only pharmacologic therapy that has shown improvement in growth parameters. Nutritional sup- plementation 5%–35% beyond the RDA promotes catch-up growth. Physical activity and adequate vita- min D/calcium intake are important to maintain skele- tal health. Enhanced assessment of factors predictive of growth will allow the inclusion of growth parame- ters as an independent outcome variable in future clin- ical trials, ultimately improving the well-being of pedi- atric patients with CD. ■

From
http://www.practicalgastro.com/pdf/January06/FaubionArticle.pdf
 

my little penguin

Moderator
Staff member
Crohn's disease affects increasing numbers of children worldwide. Generally, childhood-onset disease runs a more severe course than in adults and has a greater impact on quality of life. Therapy in children must take account of a different set of risks for toxicity compared to adults, but also to their longevity. Biologic drugs present remarkable advantages in terms of disease control for children, especially in those whose disease cannot be controlled with conventional therapies, but their long-term risks are still being assessed. Data regarding biologic use in children is limited and mostly amounts to case series, but results have been promising, both in terms of controlling disease activity and improving growth parameters. Adverse reactions are infrequent in the short term, but loss of response is a long-term problem, particularly in children. More information is needed about very long term risks. Infliximab and adalimumab are the most studied agents in children, while there is relatively limited data on certolizumab and natalizumab. Further collection of data on these agents is still needed, but this should not restrict access to these agents for children in whom no other agent is effective.

From
https://www.hindawi.com/journals/grp/2011/287574/
 

my little penguin

Moderator
Staff member
Considerable debate exists as to whether the risk of complications and need for surgery has truly decreased in Crohn's disease (CD) over time. A recent systematic review and meta-analysis reported that after the year 2000, the surgical rates at 1, 5 and 10 years have significantly decreased. It is unclear whether this decrease can be solely attributable to the introduction of biologics, the more effective use of thiopurine dosing with monitoring or perhaps earlier disease recognition and early use of effective interventions. Uncontrolled observational studies confirmed that scheduled maintenance treatment with anti-TNF as compared to episodic or discontinued use of anti-TNF resulted in fewer surgeries. Recent population-based studies have shown similar improved disease outcomes with early immunomodulator use. There is a dearth of pediatric-specific natural history studies for both short and long term. Multiple pediatric observational cohort studies have reported that up to one third of pediatric-onset CD patients progress to surgery within 5 years. This is a slightly higher proportion than that of adult patients followed in the same time frame. This discrepancy may be explained by less early biologic use in pediatric patients. More data are needed to follow all CD patients for longer follow-up periods with an emphasis on pediatric onset to better gauge whether our proposed treatment strategies are actually altering the natural history of disease and what role biologics play in this regard.

From

https://www.karger.com/Article/Pdf/358137
 

my little penguin

Moderator
Staff member
Inflammatory Bowel Diseases


P-206 YI Disease Progression in Pediatric Patients with Crohn's Disease on Biologic Therapy.
Denease, Francis; Usmani, Kathleen; Daniel, Sherin; Morganstern, Jeffrey; Chawla, Anupama



Background: The use of infliximab and adalimumab has become standard treatment options for pediatric patients with Crohn's disease. Initiating these therapies when they would be most effective would benefit those patients most at risk of rapid disease progression. Hence, the ongoing debate exists regarding step up versus top down treatment strategies. We present 3 patients with severe Crohn's disease with significant disease progression rapidly escalating to biologic therapy.

Methods: Case Series: 19-year-old M diagnosed with Crohn's disease at age 7. Since diagnosis he has had recurrent perianal abscesses requiring seton placement. Initially he was treated with 5ASA's, and immunomodulators. At age 11 he was started on infliximab. By age 12, due to poor response, he was started on adalimumab with dose escalated to weekly therapy by age 17. At age 19 Crohn's disease activity index remains moderate. 16-year-old F diagnosed with Crohn's disease at age 9. Disease course was complicated by failure to thrive with gastrostomy tube placement, worsening perirectal disease, and multiple hospitalizations. She was initially managed with 5 ASAs then thiopurines. Due to ongoing disease activity, therapy was escalated to Infliximab at age 11. She subsequently developed HACA antibodies. Following a short course of adalimumab, Cimzia was started in conjunction with methotrexate. Colonoscopy at age 16 showed a new stricture at the hepatic flexure. Therapy was escalated to vedolizumab. 8 yo male diagnosed with Crohn's disease at age 4. Disease course was complicated by perianal fistula, poor growth, and frequent flares despite treatment with sulfasalazine then thiopurines. Due to poor control, he was switched to infliximab. He subsequently developed HACA antibodies and was started on adalimumab at age 6. Colonoscopy at age 8 showed significant disease. Methotrexate was added to treatment regimen.

Discussion: Crohn's disease is a chronic, progressing inflammatory disorder. Crohn's patients with perianal involvement have a higher risk of disease complication including abscesses, fistulae, and stricture formation, as these cases demonstrate. Conventional guidelines for management of Crohn's disease utilize a step-up approach with corticosteroids +/- aminosalicylates as first line, followed by thiopurines then biologics. All 3 patients, despite moderate to severe Crohn's disease at diagnosis, were treated conservatively. Prior to therapy escalation all 3 continued to have active moderate to severe disease, raising the question of early use of biologic therapy. A recent retrospective study by Lee et al showed that treatment with infliximab leads to a longer remission period thereby indicating that biologics should be used earlier in patients with moderate to severe disease. Parents and physicians are often reluctant to step up therapy due to concerns of serious adverse effects.

Results: N/A

Conclusions: Patients diagnosed with severe IBD tend to progress to biological therapy after having been sub-optimally controlled for several years. Parental and physician reluctance to step up therapy due to concerns of potential serious adverse effects may play a role in disease progression leading to patients often functioning at a suboptimal quality of life when compared to their peers.

From
http://mobile.journals.lww.com/ibdj....aspx?year=2016&issue=03001&article=00225#ath
 

my little penguin

Moderator
Staff member
Abstract
The incidence of in ammatory bowel disease (IBD) in children has increased over the past 20 years and treatment with biologics is increasingly used.
Objective: We assessed the associations of biologics to IBD outcomes in children.
Methods: A retrospective investigation was conducted on a cohort of children with IBD between 1988/2008 who were enrolled in the Pediatric IBD registry. The diagnosis of IBD was based on clinical, radiological, endoscopic, and/or histological examinations. Clinical outcome measures were grouped into surgical, extra intestinal manifestations (EIMs), and frequency of clinical visits. Patients were categorized into two groups based on receiving biologics (exposed) and (non-exposed). The dates of each in/out patient visit and/or hospitalization were recorded. 1.3. Results: Of 335 patients, 73 children received biologics. There was no difference between the two groups in respect to age (mean = 11.6 ± 4.1 years) and gender. The exposed group had more number of surgeries than the non-exposed (OR = 2.5; 95% CI = 1.4-4.7, p = 0.004). The same trends were observed in musculoskeletal EIMS (OR = 3.7; 95% CI = 2.1-6.3, p ≤ 0.0001) and having any type of abscess and/ stula (OR = 3.0; 95% CI = 2.0-5.6, p = 0.002). However, the incidence of dermatologic and oral EIMS decreased in the exposed group than the non-exposed, 3/73 (4.1%) vs. 23/309 (7.4%) respectively, (OR = 0.5; 95% CI = 0.2-1.8, p = 0.44). This trend continued among those with renal or hepatobiliary complications (OR = 0.2; 95% CI = 0.03-1.7, p = 0.14). The 335 children had 3387 visits with a median number of visits signi cantly dropped from 1988-1994 to 2001- 2008 (16.3 ± 6.6 vs. 3.7 ± 1.9, respectively, p = 0.0001).
Conclusions: Biologic therapy offers protective effect to several EIMs in children diagnosed with IBD and it is recommended in severe cases. Moreover, the outpatient clinical visits signi cantly dropped as did the frequency of hospitalization despite the increase of the number of IBD cases that may re ect the effect of biologic therapy.

From
http://clinmedjournals.org/articles...gastroenterology-and-treatment-jcgt-1-003.pdf
 
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