New Crohn's Diagnosis

[malorymug]

Hi, my 13 year old boy has just been diagnosed with Crohn's disease and it has caught us completely off guard.

He has always been social awkward (but very bright), has a dark sense of humor, and has no pain tolerance at all. So when symptoms presented, (fatigue, lack of appetite, strange phantom pains) we sought help with psychologists first. It wasn't until he started losing weight and catching every single winter cold that the doctors became concerned.

Even during testing, I had no idea that Crohn's was a possibility. I thought we were looking for ciliacs, lactose intolerance, parasites, etc. It wasn't until after the EGD/Colonoscopy when the Dr. showed me pictures and says "I'm fairly certain it is Crohn's, we will wait for biopsies for confirmation", that I understood that Crohn's was being considered. That was two weeks ago.

We are upset about the news. Since then I have been researching and reading everything I can. And just trying to come to terms with it all. Last week the doc gave us the game plan and I'm currently freaking out about the meds. and side affects as we wait to hear results from the TMPT before he can start on 6mp. Having our first MRE in 4 days.

So, that's my intro and where we are at with everything. This forum is amazing. I'm thrilled to have found you all and looking forward to getting you all better.

 

[DJW]

Hi malorymug. Welcome to the forum. Sorry to hear about your sons diagnosis. I was diagnosed at a young age also. It's a lot to take in so be patient with yourself. It will get easier. I know the possible side effects of meds are scary but untreated crohns is far worse. Sending you and your son my support and best wishes.

We have a great group of parents of kids with crohns and I'm sure someone who can relate to your situation will be along soon.

 

[my little penguin]

Sorry to hear about the dx.
It took us of guard as well.
DS is now 10 but was 7 at dx.
We went in thinking allergic colitis or EoE .
One weeks later dx of crohn's .
DS started on pentasa
Switched to 6-mp plus peptamen jr ( formula only no food) .
En ( formula ) helps with growth and nutrition - which crohn's kids have trouble with .
See this post for info in how risks and benefits come into play.

The risk of dying if your under 14 in the US
In a car 1 in 250
Drowning 1 in 1000
From tcell lymphoma without every having immunosuppressants or Ibd 2 in 10000
Tcell lymphoma from immunosuppresants 4 in 10000

6-mp and Aza have been around a very long time and do have a good safety record for Ibd kids.
Keep in mind under treated or un treated Ibd increases your risk of cancer as well.
Not saying the choices are easy or clear but once you find the drug that works for your child things are much easier.
I do say find the drug since most kids have a more severe disease course than adults and the latest studies show the course of the disease can be changed if biologics are introduced very early ( within 3 months of dx) . This can reduce the likelyhood of needing surgery .

From:
http://www.crohnsforum.com/showthread.php?t=63245

 

[Farmwife]

Hi and warm welcomes.
I'm sorry to hear about your son. Such a tough age to have this happen.
My girl is five. She's on Humira, methotrexate and weaning pred.
It is scary but I have seen the good these drugs can do.

Hugs

 

[malorymug]

Thanks for the warm welcomes and statistics. Slowly coming to terms with it all.

 

[Jmrogers4]

Welcome malorymug, sorry you have to join our club. My son is 14 dx'd at 10. Glad the pred is doing it's thing and making him feel better now. We also did the pred route and Imuran which is a sister drug of 6MP. It does take it a while to become theraputic so I'm glad he is starting while still on pred, that gives it time to work while the pred holds things back.

 

[Cupkatemom]

Hey - I am here in DFW (McKinney). Let me know if you want to get together and chat. I wish we had a local support group. Our situation is similar to yours. It's so tough in the beginning, but it gets better.

 

[DustyKat]

Hi malorymug and :welcome:

I am so very sorry to hear about your lad what a difficult and heartbreaking time for you all. It surely is a shock when you hear a diagnosis such as this and I don’t think anything can ever prepare you for it, you just feel numb and devastated. :ghug:

The meds, they don’t make for pretty reading but then neither does Crohn’s unfortunately, damned if you do, damned if you don’t. Ugh! Howvever many do well on meds and don’t have side effects but I know it is hard to see the light at the end of the tunnel from where you are now. As a positive my two are on Imuran, the parent drug of 6MP, and have been so for 8 years and 3.5 years respectively with no issues.

Good luck with the upcoming tests and sending loads of well wishes that your boy is on the road to recovery, bless him. :heart:

Dusty. xxx

 

[CrohnsKidMom]

Welcome to the forum, but so sorry about your son's dx. My 9 yo son was dx'd last yr at age 8. Like you, it was unexpected. It is overwhelming in the beginning, but it does get easier. My son was on prednisone, tried Imuran, then moved to methotrexate. I was as frightened of the meds as I was of the disease, but you soon come to realize that the disease can't be left untreated or undertreated. And once you see your boy improving you will appreciate the meds. All the best to you and your boy! Take care!

 

[malorymug]

Hey - I am here in DFW (McKinney). Let me know if you want to get together and chat. I wish we had a local support group. Our situation is similar to yours. It's so tough in the beginning, but it gets better.

Hi neighbor! I'm on the opposite corner, down here in Joshua (near Burleson). I'd love to learn more about local resources.

 

[farmerswifey]

Hi and welcome! So sorry to hear about your son. It's quite a shock isn't it, but keep posting here, you will get tonnes of support and information! My son was diagnosed at 9 with Crohn's, he is now 11 and in remission, thanks to 6mp and Allipurinol. He plays football and has tonnes of energy, very different to 2 years ago!

It is scary to think about the meds, but Crohn's can be so much worse without them, and I can see such an improvement in my son since he was diagnosed and we had a plan x

 

[kimmidwife]

Hi Welcome!
So sorry to hear about your boy! We were pretty shocked also when our daughter was diagnosed. There is a lot of good information on the forum. I especially reccomend reading through the treatment section there is a lot of very good information in there. Please feel free to ask any questions and keep us posted on how your so is doing.

 

[Goofychicken]

Welcome, though I'm sorry you need to be here. I'm in a rush right now but just wanted to say hello My daughter was diagnosed at 3.5 this past december, and though we're doing exceptionally well right now (she has been healthy for the last 2 months), it'll always linger in the back of my mind!

 

[cre]

welcome malorymug, i am sorry to hear of your sons diagnosis. I too am new to the forum with a just turned 3 year old diagnosed with CD. I am already feeling comforted by the others on the forum as I hope you are also. Good luck to you and your family and i hope to hear soon that he is feeling better!

 

[AZMOM]

Sorry you have to be here but sure glad you found it......let us know how we can support you.

Hugs,

J.

 

[malorymug]

MRE came back with a new (??) fistula. I say new because it is in an area that was scoped a month ago. Can they grow that fast? Or did the doc miss it? I'm hoping the doc missed it because the idea that it can grow so fast is freaking me out. My boy is on prednisone and I thought that would offer some protection but if the disease is still progressing on meds, I'm worried.

And thanks to all of you and some of your stories we are starting 6mp this morning without any delays.

 

[SupportiveMom]

Just wanted to send my support. The new diagnosis stage was the hardest stage for us and redefining the new normal of learning to live with Crohn's.

Prednisone doesn't heal, it just reduces the inflammation helping the symptoms. That's why you need the 6-mp, or any of the other medications your doc suggests. If you are dealing with fistulas your doc may suggest a different medication either as a combo or instead of.

I have a 13 yr old girl who just had to go back onto prednisone. It sends her for a loop emotionally ( She is quick to anger, the smallest things bother her, is super sensitive and can sometimes be nasty). We have been on it enough for me to recognize its the drugs that is making her mean, not her and it seems every time she gets on a dosage higher than 30 mg she fights depression. I know boys typically hold their emotions in, so I thought I'd share in case he reacts this way you know why.

Fistulas can absolutely form in a month. It is possible he didn't have it at last scope.

 

[Tesscorm]

Welcome to the forum but am sorry you had the need to find us.

I don't have experience with fistulas so can't answer your questions, hopefully others with experience will come along soon. I believe Dusty's son had a fistula and his 'may' have developed fairly quickly as well.

As others have said, it is quite overwhelming at the beginning but the parents/members here are a great resource and always happy to share their knowledge and support. As you learn and as you see your son improve, you will find that things do get better. :ghug:

 

[malorymug]

Thank you for your support. I'm sure you get tired of typing the same things over and over again but us newbies need to hear it lots of different times in lots of different ways. This denial thing is huge. I think I have read 10-12 stories so similar to my son's and I was still thinking this wasn't happening. And yesterday I had completely decided to hold off on starting the 6mp until I read the experiences of others that delayed treatment and the fistula news.

Thanks again.

 

[my little penguin]

Hugs
Sorry about the fistula .
Do not be surprised if the Gi changes med plans( biologics or combos ) since fistulas tend to put you in a more severe category .
It is very hard at the start .
Most here start with the heads in the sand .
It will be ok eventually .

 

[Sascot]

Sorry to hear about the fistula. I delayed 6mp 6 months and my son ended up with a fistula. Definitely worth getting the meds on board to stop anymore forming.

 

[Mehita]

We didn't know it at the time, but when my son was on Azathioprine (sister drug to 6MP), he developed a fistula and abscess. That was our indication that Azathioprine wasn't strong enough to control his Crohn's. Like others have said, don't be surprised if your GI starts talking about Remicade or Humira now, considering the fistula.

Unfortunately, fistulas can come about that quickly, so it just points to the fact that you need to get his Crohn's under control. My son started Remicade shortly after discovering the fistula and abscess. He was in remission after the loading doses and being doing extremely well ever since.

Hang in there... keep asking questions. We're here for you!

 

[DustyKat]

Thanks for the tag Tess.

*Hugs* to you malorymug. :ghug:

My son developed the complication of a fistula and abscess less that 3 weeks after diagnosis and this was on the back on a very quick diagnosis, next to no symptoms and a pathology rating of mild to very mild disease. :yfrown:

The main thing is it isn’t something you did or didn’t do to cause this mum, it just happens sometimes and it is down to the type and nature of the disease. Crohn’s affects the full thickness of the bowel so as you can imagine it will take some time for medication to heal the mucosa fully. Unfortunately if you then have fistulising disease it only takes one deep ulcer to create these sort of problems. This was clearly the case for my son and to say I was pissed off, angry and sad would be an understatement! :eek2:

:hang: mum and sending hugs and healing thoughts that your lad is soon on the road to reemission!

Dusty. xxx