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Looking for advice

Hello everyone! Our 16 year old son (5ft 7 in 110 lbs) is currently being tested for Crohns.. His Calprotectin level came back a little over 1800 so the pediatric GI doc wanted to do an endoscopy and colonoscopy. She said she saw a little inflammation on the endoscopy and when she tried to do the colonoscopy she couldn’t because of a structure... They did a CT scan, but said the image wasn’t very good because of all the air in his colon from the attempted colonoscopy.. She isn’t sure yet , but she is leaning towards a Crohns diagnosis.. So he is scheduled for a MRE Friday.... We are supposed to meet with the doctor on December 3rd for follow up to go over blood work and test results... We have been trying to do our homework before we go meet with doctor and are looking for some advice on the questions we should ask and treatment options available in case he does come back positive.... Thank you!!
 

my little penguin

Moderator
Staff member
Hugs to you
My son is 16 as well
He was dx at age 7
There are three tiers of drugs
5-ASA (sulfanazine, Pentasa etc..) - lowest level -least effective (not recommended by Cochran as monotherapy) abd least risk -treats top layer of the intestine but not underneath
Ds took Pentasa for a month it did nothing

second tier is immunosuppressants-6-mp/aza (imuran) or methotrexate
6-mp/aza is no longer recommended due to higher lymphoma risk as well as fatal T-cell lymphoma risk when combined with biologics in teen boys
Ds took 6-mp for 8 months went straight to his liver

methotrexate is used for moderate disease but takes 12 weeks .side effects -flu like symptoms/nausea /fatigue can be very hard
For my kiddo mtx by injection had side effects for 6 days then it was time for the shot again on day 7
It did not work well by itself for his crohns -he developed an extra intestinal manifestation (EIM ) vasculitus

He now takes mtx by pills woth Stelara some side effects of nausea .fatigue but 1-2 days each week

third tier is biologics
Remicade -iv infusion every 4-8 weeks
Tajes 6 weeks to work
Recommended for strictures (severe disease)
Can up dosage by weight
Blood draws same time as infusion
Kids get spoiled
Long safety track record in crohns

Ds took this at age 8 - worked like a charm
Till he had allergic reaction after 8 months (he is allergic to most things drugs ,foods etc..)

humira is a shot every 5 days to every 14 days
Only one dose 40 mg
Does not change with weight gaining growing kiddo
Similar to remicade (anti tnf ) takes 3-5 months to work
Ds took this for 5 years - worked well no side effects except injection site rash

entyvio -by iv infusion -gut specific -seems to work more on the colon so used more in UC
Less in crohns
Takes 12 months to start working on average
Ds never took this one

Stelara -iv infusion loading dose then 90 mg injection every 4-8 weeks at home
Does not change dosing with weight gain or growth
Seems to do better on the small intestine
Takes on average 8 months to work
Ds started this one 3 years ago with methotrexate
He takes Stelara every 4 weeks
But uses it and mtx for his juvenile arthritis as well as crohns

no issues so far

Things to expect
No matter what maintenance med
Expect steriods or een (exclusive enteral nutrition-formula only no solid food ) for 8 weeks to get the inflammation down while waiting on the maintenance med to kick in
Steriods can cause moon face , acne , moodiness and weight gain short term .
Steriods abd /or een are used to slow .stop flares that will happen over the years
Steriod foams (rectal such as uceris ) can also be used for the rectum/sigmoid area .
Uceris pills can be prescribed as well for colonic inflammation.
These steroids are all short term until your maintenance meds are working

expect bloodwork often at first
Then every three months as standard
Gi appt often at first (year or two ) then spread out to every 3-6 months .

get a 504 plan if your child is expected inperson class
Thus allows extra time (stop the clock testing , time to go to the bathroom , school abscence etc..)
Not as important due to covid now but ....nice to have if inperson school is in place
Ccfa abd improve care now websites have lots of school tool boxes

Camp oasis (again when covid is calmed down ) good place for crohns kids to feel normal
My kiddo hates any type of outdoor style camp
So ... not his thing

remember the best med for your kiddo despite scary looking possible side effects is the one that heals /stops the inflammation

things may look tough at the moment
The first year or two is very tough to adjust
But you will get to a new nornal
You would know Ds had crohns by looking at him
His intestine is pink and healthy
Fecal cal less than 15
And bloodwork extremely normal (just had it drawn for routine and ESR was 2 .)
 

Lady Organic

Moderator
Staff member
Hi and welcome to the forum. Im sorry for you son's health issues. Seems like your son is being given a very good proactive global evaluation so far, thats a good start.
A member just posted a research on the benefits of enteral liquid nutrition diet for strictures here (if this was a typo error in your word ''structure''):
If your son is willing to do EEN instead of prednisone (corticosteroids), if a initial treatment is proposed by GI, I'd encourage EEN to avoid the short and long term side effets of prednisone. Prednisone is often needed in the lifetime course of IBD and if we can avoid it with alternate option, it is really best.
 
Thank y’all for all the information!!!!! It’s a lot to take in!! Sorry for the typo!! It should have been stricture! The side effects of the meds are very scary!! To my little penguin, I’m glad to hear your son is doing well!!! Thanks again for the info and I’m sure we will have many more questions if he does have Crohns..... thanks again!!
 

my little penguin

Moderator
Staff member
One last thing to put in perspective
All meds have side effects
Docs typically don’t point them out like they do with crohns meds
Infant Tylenol can cause Steven Johnson syndrome , liver failure and death
But I know I used it many times on my kids without a second thought - why because the benefits outweighed the risks

similar to other quality of life things
For kids under 14 in the US
Risk of death
In a car is 1 in 250
Drowning even if they know how to swim 1 in 1000

compared to T cell lymphoma when you take
6-mp with a biologic like remicade it’s 6 in 10,000.
Vs average person on the street without crohns or
Meds risk is 2 in 10,000.

Did my kids ride in a car -definitely
Both were on the swim team but still were watched in the pool .
Quality of life

of lot of the meds have possible risks -stress possible side effects
But when they work right
They are priceless and give your child they normal life they deserve.

good luck with the appt next week
 
Hello everyone! Our 16 year old son (5ft 7 in 110 lbs) is currently being tested for Crohns.. His Calprotectin level came back a little over 1800 so the pediatric GI doc wanted to do an endoscopy and colonoscopy. She said she saw a little inflammation on the endoscopy and when she tried to do the colonoscopy she couldn’t because of a structure... They did a CT scan, but
One last thing to put in perspective
All meds have side effects
Docs typically don’t point them out like they do with crohns meds
Infant Tylenol can cause Steven Johnson syndrome , liver failure and death
But I know I used it many times on my kids without a second thought - why because the benefits outweighed the risks

similar to other quality of life things
For kids under 14 in the US
Risk of death
In a car is 1 in 250
Drowning even if they know how to swim 1 in 1000

compared to T cell lymphoma when you take
6-mp with a biologic like remicade it’s 6 in 10,000.
Vs average person on the street without crohns or
Meds risk is 2 in 10,000.

Did my kids ride in a car -definitely
Both were on the swim team but still were watched in the pool .
Quality of life

of lot of the meds have possible risks -stress possible side effects
But when they work right
They are priceless and give your child they normal life they deserve.
Hello everyone! Our 16 year old son (5ft 7 in 110 lbs) is currently being tested for Crohns.. His Calprotectin level came back a little over 1800 so the pediatric GI doc wanted to do an endoscopy and colonoscopy. She said she saw a little inflammation on the endoscopy and when she tried to do the colonoscopy she couldn’t because of a structure... They did a CT scan, but said the image wasn’t very good because of all the air in his colon from the attempted colonoscopy.. She isn’t sure yet , but she is leaning towards a Crohns diagnosis.. So he is scheduled for a MRE Friday.... We are supposed to meet with the doctor on December 3rd for follow up to go over blood work and test results... We have been trying to do our homework before we go meet with doctor and are looking for some advice on the questions we should ask and treatment options available in case he does come back positive.... Thank you!!
Hello, I've had gastric problems for years and every time I've had symptoms like diarrhoea and bloating, my GP has advised a plain diet with no fat for a couple of weeks. No fibre but toast, white rice, pears. No fizzy drinks, caffeine, chocolate, red meat, fast foods or fried foods. Probiotics, live yogurt,
lots of water and herbal teas like camomile.
No citrus fruits or juices, no acidic foods.
Chew food, no lying down after eating and five to six small meals a day when symptoms subside. A change in diet is key and joining Crohn's and Colitis UK which has a helpline. Lots of videos on You Tube for all ages.
Best Wishes.

good luck with the appt next week
said the image wasn’t very good because of all the air in his colon from the attempted colonoscopy.. She isn’t sure yet , but she is leaning towards a Crohns diagnosis.. So he is scheduled for a MRE Friday.... We are supposed to meet with the doctor on December 3rd for follow up to go over blood work and test results... We have been trying to do our homework before we go meet with doctor and are looking for some advice on the questions we should ask and treatment options available in case he does come back positive.... Thank you!!
 
So we went back to the doctor today and we were told our son had Crohns.... The MRE showed inflammation/stricture in his ileum... said his colon looked great and he didn’t have a stricture in his sigmoid colon as originally thought. Starting him on steroids tomorrow for 6 weeks to help reduce inflammation(hopefully) and then depending on insurance he will start on Humira or IV infusion of Remicade... Is this pretty standard treatment for Crohns? Also, do most parents go get second opinions before starting on these meds??
 

my little penguin

Moderator
Staff member
Stricture equals moderate to severe Crohn’s disease leaning more towards severe.
Remicade has a proven track record for helping in folks with strictures in crohns .
Remicade is an anti tnf alpha inhibitor.
Humira is a humanized version of anti tnf alpha inhibitor as well
Remicade has been used for decades in crohns and kids with crohns
Humira has been used almost as long (started more in arthritis kids who were very young )

when Ds was 8 he failed more than a few crohns meds (Pentasa ,6-mp and methotrexate) but he had “mild “ crohns with big time extra intestinal manifestation (EIM). The EIM (vasculitus) required biologics to calm it down without staying on steriods constantly.
We got a second opinion at another hospital but also started remicade prior to the second opinion

10 years later glad we started before the second opinion
And while biologics are scary as are 99.9% of all crohns drugs
Watching the damage that can be done if the disease is under treated or the drug that looks better on paper but your kids body doesn’t like is so much worse
Biologics imo parent opinion are like gold
They let a kid heal , feel normal , grow and go live their lives

immunosuppressants like methotrexate cause nausea /fatigue flu like symptoms but sometimes are necessary as an added med (Ds takes this as well but fir arthritis)

Sorry your kiddo has a dx
But glad they are attempting to get his disease under control quickly and stop the damage to the small intestine
 
It's great that you know what is going on now and your son can start treatment. The right treatment will make all the difference and will enhance the quality of your son's life. Remicade was a game changer for my son. Good luck!
 

Lady Organic

Moderator
Staff member
according to the CD diagnosis and stricture, this sounds like standard treatments being offered to your son in 2020. Humira is a at home injection and easy to shoot on the belly every 2 weeks. I chose Humira over Remicade main reason for the autonomy it would give me. Self at home treatment over an IV treatment in a medical center every month can help reduce the psychological burden of having a chronic disease and also help for motivation to adherence to treatment in the long term.
Really hoping your son will feel better soon!
 
Steroids and a biologic (like remicade or humira) is pretty standard and appropriate. The drug you don’t want for a teenage boy is azathioprine and they aren’t suggesting it.

Biologics are a fairly recent development and have really improved treatment options for Crohn’s. There are also lots of things in development so will be more options in future.

A few kids respond well to diet, either CDED (shakes and certain food) or SCD (but might be hard to get enough calories for 16 year old boy). Some swear by them others don’t benefit at all. I would consider this an add on to biologic meds not instead of.

Good luck xx
 
Thank you all for the info and the advice. It’s comforting to hear y’all’s kids are doing wel!!! I was looking online at the costs of the Remicade and the infusion facilities..(WOW). Do most insurances cover most of the cost? Are there any discounts or coupons that help offset the cost of the med?
 

my little penguin

Moderator
Staff member
They won’t do a remicade infusion without insurance covering it
Copay card -

So your insurance coverage may be different than someone else
Hospital costs for infusion/Tylenol/Benadryl and then the actual remicade Vary widely
The copay card helps cover your copay of the drug
Most infusions are considered medical procedures just like mre /scopes so
Typically your insurance covers 80% after deductible abd you pay 20% out of pocket until you reach out of pocket max then they cover 100%
If you have an 80/20 plan
20% is a lot
Jansen has a copay card
They cover the 20%( up to a certain dollar amount a year ) then you pay about $5

some insurance requires you switch to a home health nurse after an infusion or two since this is cheaper
Others require you use a stand alone infusion center and not a hospital based one

we use the copay card for Jansen for ds Stelara
Otherwise the copays would be ridiculously high ($$$$ )
Medicines like Stelara/humira fall under the prescription side of insurance not the medical side so those have different up front costs /prior authorization forms etc but the copay cards still work .
 
I’ve been reading a lot about diet... His doctor said right know she wasn’t to concerned with his diet.... just try and stay away from fiber and anything that feels rough he should stay away from and things with seeds.. She wants him gaining weight.. Do you guys have any opinions/experience with some of the diets for Crohns? Also, for a 16 year old boy, if you had a choice would you go with Remicade or Humira?
 

my little penguin

Moderator
Staff member
So diet is controversial
Because some believe if you only eat certain things (paleo avoid sugars etc...) abd don’t take any meds you are magically fixed ......

that said een (exclusive enteral nutrition) is formula only (polymeric ,semi elemental, and elemental-ensure/boost, peptamen, vionex) is peer reviewed and as effective as steriods in crohns in kids

you drink formula only for 6-8 weeks while waiting for your maintenance meds to kick in .
Sometimes een is done with steriods to help healing and get weight gain

other times een issued As supplemental in addition to solid food this helps the most with weight gain
If they are on steriods and a maintenance med .

Ds did een instead of steriods at dx (age 7) but still needed steriods many times after that
But he has drank some sorta of shake (semi elemental (peptamen jr ) for years . Switched to elemental (neocate jr) for a few more years .
Past year he switched to carnation instant breakfast shakes

these plus meds have let him grow to 5’10” and 158 lbs. he just turned 17.

he has tried fodmaps, free of everything diet (sugar free , gluten free etc..) , cced ( crohns exclusive diet) , anti inflammatory diet
and maybe a few more over the past 10 years
Cced principle foods (eggs, potatoes ,chicken , turkey , limit to whole grains , certain veggies etc..) he still has as part of his diet

right now they want him to avoid beef (red meat), abd pork
Sticks to mostly Mediterranean style diet as much as possible /Whole Foods organic as much as possible which is what His Gi recommends

he never did scd since kids tend to lose weight on that . He was underweight at dx And he has allergies to nuts and fish so that makes it harder


16 is a tough age
Remicade
Pros
more compliance
Since they can up the dose when he gains weight so he is still getting 5 mg/kg
Blood draws are done at infusions so no separate trip
Day to rest , gets weight taken and medical staff can lay eyes on him if in an infusion center
Medical staff gives the iv /med vs him or parents

cons
He has to be close to an infusion center at every 4-8 weeks or home health come to him in the dorm (college )
so planning trips has to happen around it
Scarring on the veins from ivs every 8 weeks adds up over the years and makes Hospital ivs
Harder to get
Unfortunately blood draws every three months for years also has the same effect ..so no getting around it
Ds has too much scar tissue after 10 years abd he was only on remicade for 8 months
The rest of the scar tissue was from blood draws

Humira
Pros
Portable
They will ship it to ups anywhere in the country so even if your on vacation you can pick it up.
You can carry it with you on a trip or plane woth a cooler .
It comes in a pen or syringe
Pen is easier for some to give themselves a shot (similar to epi pen spring loaded )
But spring loaded so it can misfire and may be more painful
Syringe you control the speed less pain per ds

humira and college ....

Cons
Your or your child must give himself an injection every two weeks
He may get welts or selling at the injection site
As he gains weight (gets healthier ) the dose he was given goes down - so at 110 lbs he gets 40 mg syringe every two weeks
Say He gains 50 lbs. he would still only get 40 mg at 160 lbs .
As Ds grew and gained weight they had to increase the frequency of his humira since they couldn’t increase the dosage
There is only one adult dose
Frequency can be every 14 days down to every 5 days .

It may not be a choice just depends on insurance approval
So require you fail the cheaper drugs first
So require you start /fail immunosuppressants (aza or mtx first )
Ours required Ds fail each tier one by one
5-asa
Immunosuppressants
Then cheaper biologics

so they would not cover Stelara until he had failed
The cheaper biologics of humira and remicade
Some require failure of one of the two above
Some state which one is used first (remicade or humira )

good luck

best success Ds had for weight gain was steriods plus remicade plus 3 peptamen jr a day
Gained 30 lbs .
He had not gained any weight at all from age 5 to age 7 .
gained 30 lbs at age 8
 
So diet is controversial
Because some believe if you only eat certain things (paleo avoid sugars etc...) abd don’t take any meds you are magically fixed ......

that said een (exclusive enteral nutrition) is formula only (polymeric ,semi elemental, and elemental-ensure/boost, peptamen, vionex) is peer reviewed and as effective as steriods in crohns in kids

you drink formula only for 6-8 weeks while waiting for your maintenance meds to kick in .
Sometimes een is done with steriods to help healing and get weight gain

other times een issued As supplemental in addition to solid food this helps the most with weight gain
If they are on steriods and a maintenance med .

Ds did een instead of steriods at dx (age 7) but still needed steriods many times after that
But he has drank some sorta of shake (semi elemental (peptamen jr ) for years . Switched to elemental (neocate jr) for a few more years .
Past year he switched to carnation instant breakfast shakes

these plus meds have let him grow to 5’10” and 158 lbs. he just turned 17.

he has tried fodmaps, free of everything diet (sugar free , gluten free etc..) , cced ( crohns exclusive diet) , anti inflammatory diet
and maybe a few more over the past 10 years
Cced principle foods (eggs, potatoes ,chicken , turkey , limit to whole grains , certain veggies etc..) he still has as part of his diet

right now they want him to avoid beef (red meat), abd pork
Sticks to mostly Mediterranean style diet as much as possible /Whole Foods organic as much as possible which is what His Gi recommends

he never did scd since kids tend to lose weight on that . He was underweight at dx And he has allergies to nuts and fish so that makes it harder


16 is a tough age
Remicade
Pros
more compliance
Since they can up the dose when he gains weight so he is still getting 5 mg/kg
Blood draws are done at infusions so no separate trip
Day to rest , gets weight taken and medical staff can lay eyes on him if in an infusion center
Medical staff gives the iv /med vs him or parents

cons
He has to be close to an infusion center at every 4-8 weeks or home health come to him in the dorm (college )
so planning trips has to happen around it
Scarring on the veins from ivs every 8 weeks adds up over the years and makes Hospital ivs
Harder to get
Unfortunately blood draws every three months for years also has the same effect ..so no getting around it
Ds has too much scar tissue after 10 years abd he was only on remicade for 8 months
The rest of the scar tissue was from blood draws

Humira
Pros
Portable
They will ship it to ups anywhere in the country so even if your on vacation you can pick it up.
You can carry it with you on a trip or plane woth a cooler .
It comes in a pen or syringe
Pen is easier for some to give themselves a shot (similar to epi pen spring loaded )
But spring loaded so it can misfire and may be more painful
Syringe you control the speed less pain per ds

humira and college ....

Cons
Your or your child must give himself an injection every two weeks
He may get welts or selling at the injection site
As he gains weight (gets healthier ) the dose he was given goes down - so at 110 lbs he gets 40 mg syringe every two weeks
Say He gains 50 lbs. he would still only get 40 mg at 160 lbs .
As Ds grew and gained weight they had to increase the frequency of his humira since they couldn’t increase the dosage
There is only one adult dose
Frequency can be every 14 days down to every 5 days .

It may not be a choice just depends on insurance approval
So require you fail the cheaper drugs first
So require you start /fail immunosuppressants (aza or mtx first )
Ours required Ds fail each tier one by one
5-asa
Immunosuppressants
Then cheaper biologics

so they would not cover Stelara until he had failed
The cheaper biologics of humira and remicade
Some require failure of one of the two above
Some state which one is used first (remicade or humira )

good luck

best success Ds had for weight gain was steriods plus remicade plus 3 peptamen jr a day
Gained 30 lbs .
He had not gained any weight at all from age 5 to age 7 .
gained 30 lbs at age 8
Thanks again for all the info! Our son also has some food allergies (nuts and eggs) but on his last check they seem to have decreased a good bit.. Hopefully he will start gaining some weight soon! Glad your son is doing well!!! I’ll let you know what the insurance company tells us..
 
Hi,

My 15 year old daughter was diagnosed with Crohns 3 years ago. She started on steroids and then onto Humira. Her gut healed quite quickly and she became quite well again almost straight away. In the three years since diagnosis she has gained over 3 stone in weight and grown 4 inches. She is doing really well. Although I know this is not a cure I know only too well how important it is for a parent with a newly diagnosed child to hear these positive stories.
Wishing your son all the best.
 
So we got approved for Remicade and he gets his first infusion Dec.16th and the on the 30th and then January 29th. After that he goes every 8 weeks. Our son and us are getting nervous and scared about this treatment and the possible negative effects it could cause.. Starting to wonder if we should have started with something else first!? Any thoughts and opinions are welcome!!
 
This was my son's first treatment method and it changed his quality of life. He was 19 at 110 lbs at 5'8" - two years later, he is at 150 lbs. He had mobility issues - now that isn't an issue. He has no side effects. I was afraid as well but every medication has POSSIBLE side effects. It is great that he is getting this as first treatment. If it works for him, it will do wonders. It is natural as a parent to be worried. Tell your son to bring some music or some form of entertainment as it will take several hours, especially at the start.
Good luck.
 
I agree totally with Jo-mom"s post. I also understand your concerns you are allowed to be worried this is so new to you all.

If I knew at the beginning how important biologics is for treating a child with IBD I would not have worried myself to death. Biologics has been a complete life changer for my daughter and it gave us our daughter back. Since starting treatment she has become the bubbly confident young lady that she is meant to be.

Don't get me wrong I am sad to think she may be on this treatment for life but if that means she can have a normal active life just like other children then I am so glad she has been given the opportunity.
 
Sorry when I say how important biologics is what I meant was if I knew that my daughter would go back to having a normal active life I would never of hesitated.
 
This was my son's first treatment method and it changed his quality of life. He was 19 at 110 lbs at 5'8" - two years later, he is at 150 lbs. He had mobility issues - now that isn't an issue. He has no side effects. I was afraid as well but every medication has POSSIBLE side effects. It is great that he is getting this as first treatment. If it works for him, it will do wonders. It is natural as a parent to be worried. Tell your son to bring some music or some form of entertainment as it will take several hours, especially at the start.
Good luck.
Thank you for your encouragement... my wife is on a different forum and has seen a lot of negative stuff... It’s nice to hear the positives!!! We are glad to hear your son is doing well!!! Thanks again!!
 
Sorry when I say how important biologics is what I meant was if I knew that my daughter would go back to having a normal active life I would never of hesitated.
Thank you for sharing that with us!!!! Like I told Jo-mom, it’s nice to hear the positives! Nice to hear how well your daughter is doing!!! Thanks!!!
 

my little penguin

Moderator
Staff member
I would like to add to the positives
Ds was 8 when he started remicade
His swim coaches at the time knew by his swim times when he got remicade and when it was due
Game changer
Prior to that
The kiddo was tired /pale /no appetite had weighed 50 lbs for 3 years
Biologics have allowed him to grow /gain over the years

9 years of biologics here
And no regrets
Normal kiddo here

wanted to add typically on forum last only the sickest of the sick stick around where meds did not work
This group is different
So you typically miss all the good my kid is great stories since they are off leading normal lives abd don’t need the support any more
 
I would like to add to the positives
Ds was 8 when he started remicade
His swim coaches at the time knew by his swim times when he got remicade and when it was due
Game changer
Prior to that
The kiddo was tired /pale /no appetite had weighed 50 lbs for 3 years
Biologics have allowed him to grow /gain over the years

9 years of biologics here
And no regrets
Normal kiddo here

wanted to add typically on forum last only the sickest of the sick stick around where meds did not work
This group is different
So you typically miss all the good my kid is great stories since they are off leading normal lives abd don’t need the support any more
Thank you for sharing the positives with us!!! I’ve shared them with my wife and plan on showing them to my son after school!!! It has helped us feel somewhat better about the path forward!!!! Are there any forums for the teens so they can talk to others that are going through the same experience?
Thanks again for always sharing with us!!!
 

my little penguin

Moderator
Staff member
So if your in the US
Camp oasis (once covid is over ) great for kids/teens
Ccfa has walks where you can meet other teens
I know the big university pediatric hospitals have teen ibd virtual groups
Improve care now has groups for teens to chat

my kiddo is 17
But since he has only known crohns (dx age 7)
He doesn’t remember normal before ....
So for him not a big deal really any more
He doesn’t want to do any of the groups or camp
 
So if your in the US
Camp oasis (once covid is over ) great for kids/teens
Ccfa has walks where you can meet other teens
I know the big university pediatric hospitals have teen ibd virtual groups
Improve care now has groups for teens to chat

my kiddo is 17
But since he has only known crohns (dx age 7)
He doesn’t remember normal before ....
So for him not a big deal really any more
He doesn’t want to do any of the groups or camp
Ok.. thanks!!!
 
Being from the UK I found this forum by chance. It was about a year on from my daughters diagnosis of crohns. I am so glad I did find it because I was in a really bad place. I took my daughters diagnosis quite badly and that was all down to Dr Google and Reading the worst possible cases etc. I found this forum very reassuring because so many of the children on this forum are leading normal active lives. Also the parents on this group are so supportive. I have found a great support charity here in the UK for children living with IBD and have met some amazing friends who are families also living with IBD.

So from this please take some useful advice which is to stay away from any negative type of forums, websites etc. You will only torture yourself. Although one thing I have learnt by such negative posts and that is... The worst case scenarios I was waiting to happen in the early days never ever came.

Hope this gives you great at hope.
 
My 18 year old daughter is another who's done great on remicade. She's been on it and methotrexate since diagnosis 6 years ago. She was really sick when diagnosed, so it took about 6 months (and some other treatments like EEN and budesonide) until she really started doing well. But at that point it was really astonishing; over the next two years she went from 70 pounds to 120 pounds, and from 5'1" to 5'7". She also only missed a few days of 8th grade, after missing almost all of 7th grade due to illness and hospitalizations. Methotrexate causes a few side effects for her, but remicade really doesn't. The only long term effect that we notice is that she's slightly more prone to minor infections like sinus and ear infections. She gets one or two a year and needs to take antibiotics to get rid of them. (She hasn't had any this year, though; maybe one of the very few Covid lockdown benefits?)

I agree about Camp Oasis being a good place to meet other teens with IBD. My daughter went for 2 years and it was great for her.

I hope your son's infusions go well and that remicade works quickly for him.
 
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