Overwhelmed - newly diagnosed 14 year old - Crohn's

[cassimw]

I'm just floored. My 14 year old daughter (PAW) was just diagnosed with Crohn's. She's been having issues for a while now, but everything moved quickly after an ultrasound a week ago. She was sent for an immediate CT scan and then to see a pediatric gastroenterologist the following day. The doctor says she has a fistula. She is 99% sure of both Crohn's and the fistula. PAW has had bloodwork, stool tests, an endoscopy and colonoscopy and an MRE is scheduled for Saturday. The doctor put her on an Ensure & liquid only diet for approximately the next 2 months (she's been on it a week now) and wants to start a combination of Remicade and an immunomodulator (not sure which one) very soon. I think we're going to get a second opinion on treatment options.

I'm overwhelmed and terrified of whether the drugs will work, of side effects, of related health issues, of the need for surgery at some point, that my son will have this problem too, and countless other things. This seems like a very serious diagnosis to me. I could use some words of wisdom or support. Thanks.

 

[HannahR]

I'm just floored. My 14 year old daughter (PAW) was just diagnosed with Crohn's. She's been having issues for a while now, but everything moved quickly after an ultrasound a week ago. She was sent for an immediate CT scan and then to see a pediatric gastroenterologist the following day. The doctor says she has a fistula. She is 99% sure of both Crohn's and the fistula. PAW has had bloodwork, stool tests, an endoscopy and colonoscopy and an MRE is scheduled for Saturday. The doctor put her on an Ensure & liquid only diet for approximately the next 2 months (she's been on it a week now) and wants to start a combination of Remicade and an immunomodulator (not sure which one) very soon. I think we're going to get a second opinion on treatment options.

I'm overwhelmed and terrified of whether the drugs will work, of side effects, of related health issues, of the need for surgery at some point, that my son will have this problem too, and countless other things. This seems like a very serious diagnosis to me. I could use some words of wisdom or support. Thanks.

I know understand what it was like for my parents to learn that I had this diagnoses. I can assure you that you will get answers to questions you have on here and also encouragement and support.

I can tell you that we went years trying different medication for the purpose of treating crohn's as an autoimmune disease that is attacking your own body, but now we are coming to the conclusion that it is bacterial, as well as a lot of other medical papers and doctors. I would really love to save someone the struggle of trying every imaginable drug possible for crohn's. Please research anti-MAP therapy, you wont be disappointed! Sending prayers toward your family and your son.

 

[my little penguin]

Hugs it will be ok
My kiddo was dx at age 7 and now is almost 12.
The beginning is the hardest
He was on remicade as well

More later
Thread to start you out with discussing remicade

http://www.crohnsforum.com/showthread.php?t=73927

DS still wished he was on remicade btw

 

[CarolinAlaska]

It is very overwhelming at first. It's hard to sleep and your mind never stops trying to figure it all out. We're here. Sorry you and your daughter had to find us.

 

[ronroush7]

Wishing you yhr best. You will find a lot of great support here.

2

 

[crohnsinct]

Hi there Sorry to hear of the diagnosis. My older daughter with Crohn's was diagnosed fast as we had no idea she had it until her first major flare. She was put right away onto Remicade and has been on it for 4 years now and has been in remission for 3 1/2 years. The docs add an immunomodulator to help keep antibodies at bay thereby increasing the length of time that the biologics work for a child. The only side effect my daughter has experience is psoriasis but honestly, I have psoriasis and she had a little patch prior to dx so I am not 100% sure the Remicade gave it to her but it certainly made it worse. Other than that she is the healthiest person in the house. Seriously, has been on youth mission trips where half of them came down with mono, shared a bed with her cousin who came down with the flu etc...She hasn't had anything worse than a cold.

She is a competitive runner and swimmer. Remicade gave her back her life. She grew 8 1/2" and gained over 40 pounds.

Getting control of the disease quickly is very important. The biologics have an excellent success rate and have been proven to dramatically reduce the risk of surgery down the road...especially when used as a first line of defense.

My younger daughter has more mild disease so she is just on an immunomodulator but it isn't quite working for her. It has been almost a year and we are still trying to find what will work for her. It isn't uncommon for it to take up to a year to get things sorted out. However, the important thing is you have a dx and the attention of a doctor.

To answer your question about the risk of a sibling receiving the same dx...it is not common. Yes they have an increased risk but as our GI explained to me the general risk for a kid is 1%. If they have a diagnosed sibling the risk grows to 5%. This is probably why it took us 3 years to get my second daughter dx'd...it wasn't likely.

For some encouragement, check out the success stories here:

http://www.crohnsforum.com/showthread.php?t=27079

As for the risks, keep in mind that under treated or untreated disease has terrible risks also and they are a certainty. Here is a great presentation on risks:

http://www.ccfa.org/assets/pdfs/risk-and-benefits-transcript.pdf

This forum has been a life saver for me. I encourage you to ask away as there is bound to be someone who has BTDT and being an international forum there is someone on almost all of the time.

Just proceed with caution and remember that people generally tend to come here when things are troubling them so it is not a perfect representation of life with IBD in general. The people without problems are generally off living their happy lives.

Be gentle with yourself and give yourself time to process things. Make the doctors explain things until you are totally comfortable making a decision. Things get better! :ghug:

 

[cassimw]

I love you all already. I can tell that I will be on this forum often. I have already received so much information from the various posts I have read - things I wouldn't have thought of, like talking to the school about a 504 plan. I can't thank you all enough. It really helps to have a community that shares this same experience.

I'm intrigued by Hannah R's post -- I hadn't even heard of anti-MAP therapy - is anyone else talking about this on these forums? I did some preliminary reading on your suggestion, Hannah - I'm going to ask the doctor about this approach as well. I saw that you're part of the teens support group - do you think my 14 year old would find it helpful? Or do you think she would find it overwhelming and scary at this point? I can't check out the posts there because I'm over 19 ;-)

Thanks everyone! I'm happy to read more of your responses...

 

[pdx]

So sorry you had to find us. My 13-year-old daughter was diagnosed last December, and I still remember how overwhelming it was. The thread that MLP linked to above is a good one to read over. Hang in there.

 

[DJW]

I'm so sorry.
Sending you both my support.

 

[ronroush7]

I love you all already. I can tell that I will be on this forum often. I have already received so much information from the various posts I have read - things I wouldn't have thought of, like talking to the school about a 504 plan. I can't thank you all enough. It really helps to have a community that shares this same experience.

I'm intrigued by Hannah R's post -- I hadn't even heard of anti-MAP therapy - is anyone else talking about this on these forums? I did some preliminary reading on your suggestion, Hannah - I'm going to ask the doctor about this approach as well. I saw that you're part of the teens support group - do you think my 14 year old would find it helpful? Or do you think she would find it overwhelming and scary at this point? I can't check out the posts there because I'm over 19 ;-)

Thanks everyone! I'm happy to read more of your responses...

There is a whole section on this forum called Treatment. On the 28th of October, Hannah posted a thread called I started Anti-Map therapy. Have any questions?

 

[HannahR]

I love you all already. I can tell that I will be on this forum often. I have already received so much information from the various posts I have read - things I wouldn't have thought of, like talking to the school about a 504 plan. I can't thank you all enough. It really helps to have a community that shares this same experience.

I'm intrigued by Hannah R's post -- I hadn't even heard of anti-MAP therapy - is anyone else talking about this on these forums? I did some preliminary reading on your suggestion, Hannah - I'm going to ask the doctor about this approach as well. I saw that you're part of the teens support group - do you think my 14 year old would find it helpful? Or do you think she would find it overwhelming and scary at this point? I can't check out the posts there because I'm over 19 ;-)

Thanks everyone! I'm happy to read more of your responses...

Here are some forum posts related to MAP therapy: https://www.crohnsforum.com/showthread.php?t=69505
http://www.crohnsforum.com/showthread.php?t=70193

As with any type of treatment there are different opinions for both sides so it is good to research the good and the bad.

The doctors that are working on this protocol are extremely nice and are willing to call you if you have any questions or would like to speak to them about the protocol.

I haven't really used the Teen forum but i'm sure your son could get great support there.

 

[my little penguin]

Most map therapy is not approved in the U.S. For kids

 

[Jmrogers4]

Welcome, sorry you had to join us. My son is now 16 he was diagnosed at 10 and have been on Remicade for the last 2 years.
It has been a wonder drug for him and given him back his life and allowed him to grow and develop.
The first year can be the hardest, it's a steep learning curve and what works for one seems to have no effect with another. We are here to answer any questions or just listen when you need to vent.
Most new treatment options go through adult trials first then move on to pediatric if they show promise so I watch and read on many of the trials although at this point with my son before anything gets to pediatric he will most likely be an adult (well at least in the eyes of the law).

 

[Maya142]

Hi and welcome!
I have an 18 year old daughter who was diagnosed at 16. We went straight to Remicade and her Crohn's looked MUCH better (her colon looked "beautiful") when she had scopes 8 months later. She actually quite liked her Remicade infusions because she had a chance to relax and take a nap and miss school. She had no side effects from Remicade, besides a little tiredness the day after the infusion.

How is she doing with the liquid diet? My daughter has use formula for weight gain, but had a very hard time drinking it. We ended up going with an NG tube that she learned how to insert every night by herself for overnight tube feeds. That way she could just pull it out in the morning and no one at school had to know!

Good luck and hang in there! The first year tends to be the hardest and most overwhelming :ghug:

 

[CarolinAlaska]

Regarding the teen forum: it's my impression from a couple years ago that it didn't get frequented much. My dd goes there off and on.

 

[CrohnsKidMom]

Welcome to the forum! You are in a very overwhelming place right now. Once treatment is started you will be able to breathe again. But making decisions on treatments is difficult. Since your daughter has a fistula, the dr will not want to take this lightly. The last thing you want right now is for the Crohn's to progress further. I hope your daughter responds well to treatment and gets feeling better soon.

 

[CJMom]

I am sorry, i am also a mother to a 14 year old who was diagnosed with Crohn's for a little over a year. He was put on Remicade right away, due to the severity and the fistula also his age (not yet hitting pubertly). It helped right away and he gained the weight he lost and grew 4 inches. There have been bumps along the way, they also added methotrexate. He also has a fistula that he had when he was diagnosed and still has and has had problems with it. They have added Cipro for that. He is dealing with the pain of the fistula.

Definitly get a 504 plan and you may need to revisit that depending on the needs of your child. I am learning I need to advocate for him and even with the exceptions they make for him it is still very difficult when he misses school.

It is very hard, and upsetting. Difficult to see your child suffer and you can't do anything to help them. Then if they miss school, that is added presure for both you and your child. then add in this chronic condition that is difficult to understand and never mind difficult to talk about.

I am sorry you are going through this, it is difficult for everyone in the family.

 

[cassimw]

I am sorry, i am also a mother to a 14 year old who was diagnosed with Crohn's for a little over a year. He was put on Remicade right away, due to the severity and the fistula also his age (not yet hitting pubertly). It helped right away and he gained the weight he lost and grew 4 inches. There have been bumps along the way, they also added methotrexate. He also has a fistula that he had when he was diagnosed and still has and has had problems with it. They have added Cipro for that. He is dealing with the pain of the fistula.

Definitly get a 504 plan and you may need to revisit that depending on the needs of your child. I am learning I need to advocate for him and even with the exceptions they make for him it is still very difficult when he misses school.

It is very hard, and upsetting. Difficult to see your child suffer and you can't do anything to help them. Then if they miss school, that is added presure for both you and your child. then add in this chronic condition that is difficult to understand and never mind difficult to talk about.

I am sorry you are going through this, it is difficult for everyone in the family.

This sounds a lot like us. They also want to put my daughter on an immunomodulator - I'm not sure which one - it may be the same as your son - Methotrexate. I'm so sorry to hear that your son is still having problems and pain associated with the fistula. That sucks.

Thanks so much for your post.

 

[cassimw]

Hi and welcome!
I have an 18 year old daughter who was diagnosed at 16. We went straight to Remicade and her Crohn's looked MUCH better (her colon looked "beautiful") when she had scopes 8 months later. She actually quite liked her Remicade infusions because she had a chance to relax and take a nap and miss school. She had no side effects from Remicade, besides a little tiredness the day after the infusion.

How is she doing with the liquid diet? My daughter has use formula for weight gain, but had a very hard time drinking it. We ended up going with an NG tube that she learned how to insert every night by herself for overnight tube feeds. That way she could just pull it out in the morning and no one at school had to know!

Good luck and hang in there! The first year tends to be the hardest and most overwhelming :ghug:

That's great that the Remicade worked so well for your daughter! It's very encouraging to hear this.

My daughter felt almost immediately better when she went on the liquid/Ensure diet. It's been tough emotionally for her - she, of course, really wants real food (who wouldn't?)... But otherwise, she's sticking to the diet and keeping it down. I'm not sure if she's keeping or gaining weight yet though, since it hasn't been long. I hope she doesn't have to keep it up much longer.

 

[Maya142]

Glad she's doing well with EEN! Kids that can drink their shakes really impress me -- I don't think I could do it! I'm sure weight gain will come soon, you just have to be patient unfortunately.

 

[Optimistic]

Cassimw,
I'm sorry to hear about your daughter. Pardon my French but it does truly suck when you see this happen out of nowhere to your child, to your family. My son was diagnosed over a year ago. His disease come on fast and hard. I felt like I was in a bad dream and desperately wanted to wake up and make it all go away.

The good news is she will end up in a much better place. It might take time, but this ugly time will be behind you. Hang in there.

There are lots of tips for how to make EEN a little better on this board. Do a search or ask us to post them. My husband tried EEN with my very reluctant son, and he confirmed it was indeed horrible!

I hope tomorrow is a better day for her.