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Newly Diagnosed

Hi, my 12 yr old son was just diagnosed this week and we are all in a bit of shock. We had no idea that he may have this. I dont even know why im writing this but im just wondering if anyone has any words of wisdom for us or if anyone has a son of the same age that wouldnt mind having a chat with him.
 

my little penguin

Moderator
Staff member
There is a parents of ibd kids group
Found here

ds was dx at age 7 and now is 16 so we have been doing this a while the first year is shock
Second year is much better

there are no right meds
Just the ones that work for your kiddo
Whatever keeps the intestines healthy is now my motto

Tagging @crohnsinct
@Tesscorm
@Pilgrim

plenty of parents here in your shoes

what meds is he on ?
Een
Steriods
Plus what maintenance meds
Methotrexate or remicade or both ??
 

Tesscorm

Moderator
Staff member
Hi ash,

I'm sorry you've been given this diagnosis for your son. My son was diagnosed at 16, almost 10 years ago but I still remember the fear and disbelief when given the diagnosis. You're suddenly thrown into a 'new' life and it's overwhelming and scary. And, as MLP said the first year is rocky but it all settles... both your fears and the illness.

You'll find lots of support and guidance here, so I'm glad you found the forum! It truly was a lifesaver for me!!

My best advice for you is to learn as much as you can! There's lots to learn so it may feel a bit daunting but, the way I approached it was to learn bits and pieces and I looked at it like a jigsaw puzzle... every bit I learned was a new piece and, soon, the pieces began to fit together. You can't learn it overnight so give yourself time and deal with all of it one thing at a time, one day at a time. The members here are fantastic at answering questions!!

A mini crash course:

diagnosis - they will tell you where your son's crohns is located as this can affect treatments and symptoms.

Regardless of location, in layman's terms (please understand I am only a mom with absolutely no medical background, so some of what I share is just how I've come to understand it!) crohns is an immune response that causes inflammation. The inflammation is ongoing and will eventually cause scarring and other problems in the intestines. First goal is to get inflammation under control asap and second goal is to reach remission (when there is no inflammation on an ongoing basis).

tests -
bloodwork can show if there is inflammation but can't identify cause or location. The bloodtest indicators are CRP and ESR (sed rate). Stool samples can be tested for intestinal inflammation (fecal calprotectin FC) but this is also limited as it is more useful for certain areas of the intestines.

imaging and scopes - colonoscopy allows the GI to see as far as the terminal ileum (where the large and small bowel meet). Scopes can not reach very far into the small bowel. MRIs are used to view the small bowel. Pillcams (tiny cameras you swallow) are sometimes also used but also have limitations - can get stuck in one spot, camera may be pointing to the left and miss inflammation to the right, etc.

treatments -
Steroids or EEN (exclusive enteral nutrition) are used to get inflammation under control and get your son to remission. Steroids have risks and side effects but are necessary. EEN can be used in placed of steroids but require a diet of nutritional formula ONLY for approx. 6 weeks, no food (sometimes a very small amt is allowed). This is very hard to follow but has comparable success as steroids and has no side effects or risk.

Maintenance meds (which maintain remission) are usually started along with steroids/EEN as the maintenance meds often need some time to reach therapeutic levels. So you want them to be working by the time you finish the steroids/EEN.

Maintenance meds do have risks which sound scary, especially to a parent!! And, generally, these meds are for life - although there are exceptions. We've all struggled and cried over the thought of giving our kids these meds. :( This is part of the 'new life' to which you'll need to adjust. Unfortunately, there really isn't any way around it. :( But, one thing to remember is that there are risks every where that we allow our kids to take... my son played competitive hockey (the hits absolutely terrified me), we let them learn to drive and then to be in cars driven by other inexperienced drivers, we let them go swimming, go to cottages, ride in boats, go skiing, the list is endless... all this to allow them a better quality of life... the same for the meds. And, the risks from the meds really are small!!!

Some people have tried to use diet to control inflammation... I think only a few have had any success and I believe it would be very hard to maintain. My son was such a picky eater, a restrictive diet wasn't even a remote possibility so I have no experience with it.

And, then, most important... life goes on!!! My son graduated high school and university. He continued playing competitive hockey until 18 and still plays recreational hockey. He's travelled with friends a number of times. He's now working and living on his own. He's had two injuries (unrelated to crohns) that have required surgery... he's recovered just as he would have without crohns.

There have been adjustments made but really he's gone on with his life.

Something else to know... and it can create more frustration! Everyone responds differently to crohns - symptoms can vary greatly from person to person, response to meds can very greatly, response to testing can vary (some people have perfect bloodwork but have ongoing inflammation), etc. So, just a heads up so you are not discouraged if the first med doesn't work or the first test doesn't give unequivocal results.

I hope this helps... I hadn't meant to write quite so much but... hopefully, it'll get you started on your journey in as positive a way as possible.
 
Last edited:

Tesscorm

Moderator
Staff member
Jo-mom... I'm not here as often anymore (which is a reflection that things do get better and balanced!) but, here or not, I've thought about all this for 10 years! One adjustment is that it'll always be a part of a parent's life... even at S's age and with him doing well for a long time, I just confirmed his remicade apptmt this morning... and last night, reminded him again to write an email to his GI about a couple things...

So... Been there, done that (still doing that!)! :D Hopefully, when I'm here, I can help someone see down the road a bit. :)
 
Hi ash,

I'm sorry you've been given this diagnosis for your son. My son was diagnosed at 16, almost 10 years ago but I still remember the fear and disbelief when given the diagnosis. You're suddenly thrown into a 'new' life and it's overwhelming and scary. And, as MLP said the first year is rocky but it all settles... both your fears and the illness.

You'll find lots of support and guidance here, so I'm glad you found the forum! It truly was a lifesaver for me!!

My best advice for you is to learn as much as you can! There's lots to learn so it may feel a bit daunting but, the way I approached it was to learn bits and pieces and I looked at it like a jigsaw puzzle... every bit I learned was a new piece and, soon, the pieces began to fit together. You can't learn it overnight so give yourself time and deal with all of it one thing at a time, one day at a time. The members here are fantastic at answering questions!!

A mini crash course:

diagnosis - they will tell you where your son's crohns is located as this can affect treatments and symptoms.

Regardless of location, in layman's terms (please understand I am only a mom with absolutely no medical background, so some of what I share is just how I've come to understand it!) crohns is an immune response that causes inflammation. The inflammation is ongoing and will eventually cause scarring and other problems in the intestines. First goal is to get inflammation under control asap and second goal is to reach remission (when there is no inflammation on an ongoing basis).

tests -
bloodwork can show if there is inflammation but can't identify cause or location. The bloodtest indicators are CRP and ESR (sed rate). Stool samples can be tested for intestinal inflammation (fecal calprotectin FC) but this is also limited as it is more useful for certain areas of the intestines.

imaging and scopes - colonoscopy allows the GI to see as far as the terminal ileum (where the large and small bowel meet). Scopes can not reach very far into the small bowel. MRIs are used to view the small bowel. Pillcams (tiny cameras you swallow) are sometimes also used but also have limitations - can get stuck in one spot, camera may be pointing to the left and miss inflammation to the right, etc.

treatments -
Steroids or EEN (exclusive enteral nutrition) are used to get inflammation under control and get your son to remission. Steroids have risks and side effects but are necessary. EEN can be used in placed of steroids but require a diet of nutritional formula ONLY for approx. 6 weeks, no food (sometimes a very small amt is allowed). This is very hard to follow but has comparable success as steroids and has no side effects or risk.

Maintenance meds (which maintain remission) are usually started along with steroids/EEN as the maintenance meds often need some time to reach therapeutic levels. So you want them to be working by the time you finish the steroids/EEN.

Maintenance meds do have risks which sound scary, especially to a parent!! And, generally, these meds are for life - although there are exceptions. We've all struggled and cried over the thought of giving our kids these meds. :( This is part of the 'new life' to which you'll need to adjust. Unfortunately, there really isn't any way around it. :( But, one thing to remember is that there are risks every where that we allow our kids to take... my son played competitive hockey (the hits absolutely terrified me), we let them learn to drive and then to be in cars driven by other inexperienced drivers, we let them go swimming, go to cottages, ride in boats, go skiing, the list is endless... all this to allow them a better quality of life... the same for the meds. And, the risks from the meds really are small!!!

Some people have tried to use diet to control inflammation... I think only a few have had any success and I believe it would be very hard to maintain. My son was such a picky eater, a restrictive diet wasn't even a remote possibility so I have no experience with it.

And, then, most important... life goes on!!! My son graduated high school and university. He continued playing competitive hockey until 18 and still plays recreational hockey. He's travelled with friends a number of times. He's now working and living on his own. He's had two injuries (unrelated to crohns) that have required surgery... he's recovered just as he would have without crohns.

There have been adjustments made but really he's gone on with his life.

Something else to know... and it can create more frustration! Everyone responds differently to crohns - symptoms can vary greatly from person to person, response to meds can very greatly, response to testing can vary (some people have perfect bloodwork but have ongoing inflammation), etc. So, just a heads up so you are not discouraged if the first med doesn't work or the first test doesn't give unequivocal results.

I hope this helps... I hadn't meant to write quite so much but... hopefully, it'll get you started on your journey in as positive a way as possible.
Thanks you so much for all the information. Im a bit overwhelmed at the moment. This is a great forum where I can get loads of information. Im just trying to take it all in. Its very early stages for us, my son was diagnosed through stool sample, mouth ulcers and anal fissures and will be getting the endoscopy and colonoscopy in 2 weeks. He is on Flagyl and Fortisip drinks and a steriod for his mouth. So we wont know a whole lot more until we get the other tests done. Thanks again for the insight into the future as its all a bit scary
 
There is a parents of ibd kids group
Found here

ds was dx at age 7 and now is 16 so we have been doing this a while the first year is shock
Second year is much better

there are no right meds
Just the ones that work for your kiddo
Whatever keeps the intestines healthy is now my motto

Tagging @crohnsinct
@Tesscorm
@Pilgrim

plenty of parents here in your shoes

what meds is he on ?
Een
Steriods
Plus what maintenance meds
Methotrexate or remicade or both ??
Thanks you so much for all the information. Im a bit overwhelmed at the moment. This is a great forum where I can get loads of information. Im just trying to take it all in. Its very early stages for us, my son was diagnosed through stool sample, mouth ulcers and anal fissures and will be getting the endoscopy and colonoscopy in 2 weeks. He is on Flagyl and Fortisip drinks and a steriod for his mouth. So we wont know a whole lot more until we get the other tests done. Thanks again for the insight into the future as its all a bit scary
 

Tesscorm

Moderator
Staff member
It all sounds very similar to my son's experience at diagnosis. He also had mouth ulcers and fissures. He didn't have steroids for his mouth but was on flagyl through IV for approx. one week and started on Tolerex (similar to Fortisip) for six weeks.

You didn't mention how long your son wud be there n fortisip but just want to say my son did very well with EEN.

Hope you get answers and a solid plan after scopes.
 
It all sounds very similar to my son's experience at diagnosis. He also had mouth ulcers and fissures. He didn't have steroids for his mouth but was on flagyl through IV for approx. one week and started on Tolerex (similar to Fortisip) for six weeks.

You didn't mention how long your son wud be there n fortisip but just want to say my son did very well with EEN.

Hope you get answers and a solid plan after scopes.
Thanks for your information. He is just taking the fortisip as well as food for the time being and there is talk of 6 weeks on EEN after scopes.
 

Tesscorm

Moderator
Staff member
Yes, makes sense that the exclusive period would begin after confirmation from scopes. That is also how it went with my son. He was admitted in hospital for a week prior to scopes, so he ate regular foods until scopes and EEN began after.

If it wasn't mentioned to you already, you can ask your dr/nurse... my son was put on a low residue diet for the week before scopes. Your son will need to do the clean out procedure prior to scopes but, I believe the low residue diet helps (but isn't absolutely necessary). It was an easy diet for my son as it was all his favourite foods anyway, lol - toast, macaroni & cheese, french fries, etc. I kept asking drs/nurses if this was really what he should be eating! It seemed such an unhealthy diet for someone who was already admitted due to gastro problems! :oops: But, it was all foods that move through easily...
 
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