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Crohn's Disease Forum » Parents of Kids with IBD » I feel so lost (grateful if you read-long)


09-12-2014, 11:25 PM   #1
kernelmom3
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I feel so lost (grateful if you read-long)

My 15 year-old son, Grayson, was diagnosed with Crohn's a few weeks ago. During the colonoscopy, his GI perforated his bowel. He had to have emergency surgery to repair the hole. He stayed in the hospital on IV antibiotics for a week. Yesterday after being home for almost 2 weeks, he had a low-grade fever and stomach pain. I took him to his pediatrician and she ordered labs and xrays. The xrays showed no obstruction. The ped and GI talked and the GI called me to tell me the labs showed what he thought they would because of the inflammation he had. He said to go to our post-op visit with the surgeon and then he'd start Prednisone. He said "Don't be surprised if the surgeon orders a CT scan to rule out abscesses before clearing Prednisone." I asked if he thought that was what was going on because our appointment wasn't for four days. He said he was comfortable with us waiting. I said I WASN'T. So he ordered a CT scan for that night. Cut to four hours later at 10:30 PM after drinking contrast and waiting he called me with the results. He said "You were right. You shoułd be a physician." Then he told Grayson has an abscess and possibly another perforation and I should drive him to the hospital his surgeon was at to see him and start antibiotics right away. We got here (I'm writing this from his bedside) and they started antibiotics pretty quickly. They said it was an abscess but it's nicely walled off. It's right where his surgery was and it's relatively common. He's pretty inflamed but they don't think it's a perforation but might be a fistula. The plan is to keep him on IV antibiotics, control his pain, monitor his condition and labs and wait.

When his GI came in today, he said after Grayson has an MRI (not sure if he'd do that before discharge or out-patient) his surgeon said based on the results he can start therapy. Prednisone for sure (for three months!!??) and another med. Here's where I'm confused: after discharge he said he was thinking Prednisone and 6MP. Today he said that's still an option but now he's thinking Remicade!!?? I'm so scared to do the wrong thing and I feel like with as sick as he is, I don't have time to get a second opinion!!!! Also, after discussing the fact that the GI perforated Grayson during colonoscopy with our pediatrician, my husband and I decided to keep him as our GI. But now that he said he was comfortable waiting for our post-op appointment and if I hadn't pushed to get the CT done.....

I'm just so lost. I feel like I have to make a HUGE decision based on information from someone I'm not sure I trust and I don't have time to find someone I DO trust. Any guidance is so greatly appreciated!!!
09-13-2014, 01:28 AM   #2
Catherine
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Sorry to hear your boy back in hospital.
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Catherine
Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
09-13-2014, 03:00 AM   #3
worriedboy
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Hello,

I am sorry to hear that your son is struggling, I hope he stabilizes soon; you both had rough time with the hospital stays etc.
I'd go for the pred. as soon as the doc would prescribe it; it can provide a quick fix and short term it may give you some time to get a second opinion and for your son to get back on his feet.
Then, maybe after having a second/third opinion, you would probably start another long term therapy while weaning off the pred.

Anyway both 6mp and Remicade are long term and you may want to talk to the doctor and ask why he changed his ind between the two, maybe this would give you some extra information.

I hope you get things under control soon and feel much better.
Good luck.
09-13-2014, 04:44 AM   #4
Sascot
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Sorry things have been rough. There are GI's that seem to start "slow" with 6mp and also those who start with Remicade, so your GI isn't doing anything different. My son is on 6mp but his case is quite mild, maybe now that your son has had all these issues and a possible fistula the GI wants to start Remicade to give him the best chance to get better quicker. 6mp does take up to 4 months to make a difference. We gave no experience with Remicade but from what I have read on here, it seems to help fairly quickly and I believe it has a better chance of healing fistulas. If you are uncomfortable with 3 months of Pred, could your son start the 6-8 weeks EN, which would give his bowels a chance to heal. Good luck
09-13-2014, 05:56 AM   #5
Orchid
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If your child possibly has a developing fistula starting with Remicade is typical as a first choice because 6-MP/Azathioprine (these are the same drug delivered in different states) takes three months or more to reach therapeutic levels in the body due to it's complex metabolism, slow mechanism of action, and the fact the dose has to be ramped up gradually because it can be dangerous for the liver/kidneys and can cause several serious complications,. During that time it could chew it's way through so much of your son's bowels, leading to anywhere in his lower abdomen you can think of, anywhere. And in long term use Azathioprine/6-MP are associated with heightened risk of lymphoma, including a very rare and usually lethal form.

Remicade has fewer side effects, though admittedly a more annoying method of administration. You go in and get a slow drop IV called an infusion once every few weeks instead of popping pills. It tends to cause an injection site reaction, redness and soreness in the area where the medication entered the body, and some people have mild fevers, headaches, and the like for a few days after. It was previously thought it and other drugs in it it's class might increase the risk for certain lymphomas but recent studies have shown it only slightly increases your chance for non-melanoma skin cancer which is very treatable and has a 90% plus survival rate.

In either case, he'd be immunosuppressed - a flu shot is recommended and an HPV vaccine is also a good idea because some forms of HPV it protects against can cause serious diseases in the immunsuppressed. It's a terrible choice, but I'm sure you'll find one the right one for your child.
09-13-2014, 06:30 AM   #6
dave13
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I'm new to Remicade infusions.If you choose Remicade for Grayson,there is a Remicade support group.Folks there have been great in answering my questions.
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09-13-2014, 07:40 AM   #7
my little penguin
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DS has been on both drugs. Our second opinion Gi told us there is no right way to get to remission just whatever drug gets you there.
The large majority of kids need at least 6-mp but once fistulas or abscesses come into play the stakes of needing surgery get higher and biologics are usually used.
Personally DS loved remicade - less side effects worked faster downtime with DH at the infusion center pampered by the nurses -no extra blood draws( they are done at the time the iv is placed).

From a science standpoint using remicade or biologics within the first three months of dx has the best outcome for healing the intestine and reducing the risk of future surgery.
We also didn't wait to start remicade even when we were getting a second opinion.
I am going to tag mehita - her son had to have surgery and then switch to remicade and clash her son started right on remicade .
Jmrogers,maya142, crohnsinct , farmwife, are all on a biologic right now.


Its scary but getting the intestine healthy as fast as possible is key.
Ibd drugs come in a pyramid a lower level less effective taking longer to work - some docs go bottom up ( 5-ASA, 6-mp then biologics)
But recent studies have shown top down
Upper level biologics first reduce inflammation fast and heal fast .

6-mp does not change the long term course of the disease ( reduce the risk of future surgery). Remicade does change the course of the disease.

Good luck
Hope he is on remicade soon and life gets back to normal.
It took DS a year of being in pain to get to remicade but when he did it was like he wasn't sick at all anymore . He also grew and gained weight.
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09-13-2014, 07:43 AM   #8
my little penguin
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Articles for you from the parents pediatric research section
http://www.globalacademycme.com/clic...ee9134a23.html

http://www.chop.edu/export/download/...4_Grossman.pdf
09-13-2014, 08:57 AM   #9
Clash
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Hi, my son was dx'ed at 15 and we went straight to remicade. The difference was night and day, he went from being fatigued, in pain and unable to attend school to no symptoms.

For a lot of kids, remicade gets them back to their teen life. It really was amazing as my son did a 180 after the first injection.

I agree with my little penguin, if he may have a fistulas then remicade is a very reasonable option. And since kids disease tends to be more aggressive hitting it with the big guns is a common treatment course.

I hope things improve soon.
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Clash
Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
09-13-2014, 09:16 AM   #10
Mehita
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I'll bet my money they are suggesting Remicade because of the abscess and fistula. It's very effective for those two symptoms.

We did the bottom up approach. Started with Pentasa, ended up in surgery, did Azathioprine (sister drug to 6MP) for six months, ended up with an abscess and fistula. During the abscess/fistula hospital stay he started Remicade. Between the antibiotics and Remicade he was feeling wonderful within days. By his third infusion the abscess and fistula were gone. He's been in remission ever since.

Had I known then what I know now, we would have done Remicade right from the start. Had we done so, we probably could have skipped out of surgery and three hospital stays.

My son loves Remicade. He goes in once every eight weeks, which also means he only has to think about his disease once every eight weeks - a big plus in his book. No daily pills to worry about. He just plays video games, he snoozes, watches TV, snacks, gets to skip school for the day and goes home feeling awesome. He's never had any reactions or side effects. Remicade has given him his life back.
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Mom of DS, age 17, dx Crohn's and Celiac Oct 2008
- Remicade, started Nov 2013, added Solumedrol June 2015
- added Methotrexate/Folate March 2016
- Multivitamins, Probiotics, Vit D
- Small bowel resection, Jan 2013
09-13-2014, 09:24 AM   #11
Mehita
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Two other things... starting Remicade now may allow you to skip the prednisone. It did for DS and that was one of the reasons we agreed to Remicade. We didn't want him on pred anymore.

Second, if they send you home soon, they may insert a PICC line and have you do the abx via IV. Don't panic! It's not as bad as it looks or sounds. We had to do two weeks of IV antibiotics at home for the abscess and fistula. A little bit of work on your part, but WAY better than being in the hospital. Send me a message if this ends up being the case and I'll help with questions if I can.
09-13-2014, 09:45 AM   #12
Maya142
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My daughter was diagnosed at 16 and we went straight to Remicade. Her Crohn's wasn't even bad, but since she was already on biologics to treat her arthritis, we figured we'd put her on one that would treat both.

There is absolutely nothing I regret about going to Remicade. About 8 months after she started, we repeated scopes and they looked really really good! Like MLP said, my daughter actually likes the infusions - she gets a chance to relax, miss school and watch tv or read a book. The nurses fuss over the kids and bring them snacks (cookies!).

Both my daughters are on biologics and have been for years, and neither gets sick more than other kids. We wash our hands a lot and try not to share food or drinks but we really don't do anything special. In fact, of all the drugs they have been on, biologics have really been easiest to tolerate (no side effects!).

There is a good CCFA presentation about the risks and benefits of various drugs used for IBD: http://programs.rmei.com/CCFA139VL/

It's really important you have a GI you trust. If you don't like the one you're with now, a second opinion could be very helpful.
Good luck!
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Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
09-13-2014, 11:44 AM   #13
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I'm new here but all I can say is that after going through the gamut over the last (almost) year, Remicade has been the one thing that seems to be working for my son (fingers are crossed).
We've been through several different major health issues in our family, and I can state that it is VERY important to take your family's health in your own hands (as you have done) and go to a Dr./place you can trust. For two of our major issues that meant Duke University for one, and Cincinnati Childrens for another. Alot of traveling for us but we felt that we got top-shelf care.
That said, for my son's UC we have stayed local so far and from what I've read online from lots of folks, the local GI is handling this with the same protocol that other places would. I think until surgery is involved there's a pretty safe established protocol. For surgery, I would definitely travel to an experienced, trusted facility for that particular surgery.
Good luck, said a prayer for your son and family.
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Son dx with UC in October 2013 @ 16 y.o.
Have gone through a dizzying array of various Aminosalicylates, Immunomodulators and Antibiotics.
Could not stay off Prednisone until beginning Remicade & Otrexup (Methotrexate) Aug. 2014. We'll see how it goes...
09-13-2014, 05:04 PM   #14
DustyKat
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The thing your lad may be facing first up is that the abscess, in all likelihood, will need to be drained. Whilst antibiotics do work to some extent on an intact abscess the response usually isn’t fabulous unless it is drained. Mostly this is done via a percutaneous drain, this a drain that is inserted through the skin and is normally done in X-Ray via CT scan guidance. The drain is either taken out immediately after the drainage or may be left in for a few days, or months, depending on the circumstances. If the drain is left in there is the opportunity to see if a fistula is indeed present via a procedure called a sinogram. This again is a radiological procedure where dye is injected through the drain and is then tracked to see if the dye leaves the abscess and connects with the bowel. If a fistula is present then the drain will need to stay in until the complication is resolved. If the drain is removed without further investigations being done and a fistula is present you will soon know as the abscess will reform.

Unfortunately the complication of perforation and/or abscess doesn’t leave you a lot of time to manoeuvre but having said that the here and now is the immediate concern and this involves finding out exactly what you are dealing with and stabilising him. In its own way this can buy you a certain amount of time to ask questions and search for answers and even obtain a second opinion if he can slotted in as an urgent. The key here is stabilisation and that generally involves short term meds…steroids, 3 months is about an average course from full dose to full taper, and antibiotics. Until the abscess is resolved then the biologics may not be on the table so again you may have some time on your hands.

As has been said, the main thing is to get healing started and as quickly as possible. The less damage done the more favourable the outcome. Remicade (Biologics) will do this substantially quicker than the class of drugs below it (Imuran/6MP).

You won’t do the wrong thing mum. This disease is unpredictable and you can only make decisions based on what you know at this point in time. There are no wrong or rights just what is the best fit for the here and now. Being flexible is the most important thing and knowing that any failure of treatment is not a failure on your part.

Dusty. xxx
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09-13-2014, 08:39 PM   #15
Farmwife
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My grace had her first round of Remicade last week. I've already notice more energy.
Yes I hate the big drugs but am thankful we have them and when they work.
hugs its never easy to make these decisions for the ones we love.
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I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
09-14-2014, 09:09 PM   #16
CrohnsKidMom
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I'm sorry your son has been going through all this, and sorry you're not having much confidence in your GI. You've gotten great advice already, but I would just mention that although 3 months of prednisone seems long, it probably includes a slow tapering off period. And it is important to do a very slow taper so the body adjusts and you don't have a relapse. I hope your son starts feeling better soon.
09-16-2014, 05:09 PM   #17
Brian'sMom
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I might just add that you may want to address your concerns about your GI. Maybe ask why he waffled a bit. He may have been thinking out loud and not realizing he was worrying you. If you ask, you may decide you like his answer and his plan for your child. All of the GI's we've seen are big about saying "NO" to prednisone. Even when I really wanted it for my son. When they are so young I think if they can avoid it they do. Remicade is good for fistulas. In my experience, my great anxiety came from when we had a GI I didn't trust. Now that we have a team in place that I highly respect and feel like they really like us and want what is best for my kid I'm in a much better place with this disease. (And I'm on a 3 year rollercoaster of crohn's yuck if you follow on here much!! And the ride is still going!) I also like that our GI is thinking about my son as an adult someday.. and prescribing medicines and surgery with that in mind.
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Kathy, Mom of 14 yr old Brian
symptoms 2005, official dx 6/2010

Praying for Remission
Vedolizumab 8-8-14
Ileostomy 3/22/14
Multivitamin,Iron,Vit D

Total EEN 12-10-13 to:TPN 1-29-14 - 4-2-14
Tried:Azathioprine,Pred,Pentasa,Cimzia Bi weekly & MTX 9/2013 to 8/2014, Humira 1/2011-9/2013, w/oral mtx 5 mos in 2013. Remicade: Had allergic reaction Jan 2011 Built up antibodies by 3rd infusion.
Has done round of Flagyl due to abcess 12/10 and 10-21-13 which helped both heal quickly.
09-16-2014, 08:32 PM   #18
AZMOM
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You have had your hands full. You will find quickly that you need a comfort zone with this doc and at least it sounds like he's willing to admit when Mom's intuition was correct. :-)

With us, the 3 month course of pred with a taper, allowing time for 6MP to build up was how we started. Her doc originally wanted Remicade but she wasn't a candidate. So sometimes they are just talking plans while they get details, I think......

Love your heart. I remember all too well.

Try hard to take it one day at a time. Ask questions. Read. Trust your gut.....you're the Mom! (Pun intended)

Hugs,

J.
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Julie

Mom to Claire - 11 going on 17

Dx JRA age 3, Crohn's age 6
Acute transverse myelitis at age 5

Started IVIG September 2016
Started Tacrolimus October 2016
Neurontin 100mg twice daily
Folic Acid
Calcium/D supplement
Daily Vitamin
Daily Probiotic

No more Enbrel, Stelara, Methotrexate, Allopurinal or 6MP
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