Crohn's Disease Forum » Parents of Kids with IBD » Confused/Treatment Options

04-12-2013, 02:26 PM   #1
Join Date: Apr 2013
Location: Goshen, Indiana
Confused/Treatment Options

I think I am going a little crazy. Hi, I am new here
I have a son who is 13 yrs old and was diagnosed exactly a year ago with CD. It is pretty severe. Hospitalized for a week, fistula's, extreme weight loss... The fistula is almost completely healed, but he's had a few set backs. The fistula came back for a short period, but it is now almost gone and no pain. But he is having loose bloody stools now and so we had to have more labs done today. And now, I guess I'm just confused about the treatment options. He is on azathioprine and was on Prednisone also, but they took him off the Pred and lowered the dosage of azathioprine and then, after the fistula and another flare up, they upped the dosage of azathioprine... and now they are opting for Remicade again. The Pediatric GI has been pushing Remicade ever since I first met her...
I didn't want to do it at first, and I still am very hesitant because of many, many reasons... one of which is the cost. Insurance may cover some, but surely it will not cover one hundred per cent. Then there is the distance we have to travel to see this doctor, a three hour trip one way. I've missed more work than I can afford to, lost one job, with missing more work to take him to the doctor today I am most likely on my way out the door at my current job, and I am in no position to lose this job or take time off of work. I have 4 kids and 2 step kids (Ages: 17, 16, 13, 12, 9, & 2) and financially we are struggling already. Medical bills are already through the roof, prescriptions (for many of us, not just my son with Crohn's) and the cost of driving 3 hours to get a 3 hour infusion and then driving 3 hours to come back home, it just doesn't seem feasible.
I want what is best for my son, but I also don't want to tie him into a medication that he may not be able to afford once he is an adult himself, let alone one that may cause so many side effects and time off of school and cause us to be unable to feed our family or lose our home.
I have tried to read about this and I get so confused. I want to be able to talk with this doctor and let her know that I want him better, I want him to not have as many complications, but I also want to try as many forms of less invasive treatment options as possible before having to take the Remicade step. For anyone who has extensive knowledge of this disease or has just done this for so long they are now an expert, could you please give me a little advice on how to go about this or do I have no choice?
I feel like we have only tried the one pill and since she has tried to push Remicade from the very beginning, I sort of feel there is some ulterior motive or something. Why wouldn't we want to do another form of treatment that is less costly, less time consuming, and less of a hassle? If we could do the infusions closer to home, I don't think that it would be AS big of an issue, but since she insists that we make the trip there for every one of them, I just can't imagine being able to do this financially or even mentally or emotionally.
Any suggestions would be greatly appreciative.
04-12-2013, 02:51 PM   #2
Senior Member
Jenn's Avatar
Join Date: Jul 2011
Location: San Diego, California
I'm so sorry about your son and glad you found the board. Talk to his doctor about maybe trying Humira first instead of Remicade, because of the hassles with travel and insurance. Humira has an assistance plan (so does Remicade), check their web sites. From what I understand, Aza is similar to 6 mp, which was not effective alone for my son either. GIs are pushing biologics earlier now, it's considered a top-down approach, especially for children to get their disease under control quickly so they don't miss important growth spurts and to postpone surgery as long as possible. Hang in there!
Jennifer ~ son dx at age 8, Sep 2010
currently on Humira, Feb 2012+, MTX (25mg) Aug 2017+, folic acid
past use: 6mp for Sep 2010-Apr 2011 (not effective enough), then Remicade April 2011-Dec 2011 (built antibodies); additional 6MP Aug 2012-Sep 2013; Periactin for appetite Sep 2010-Sep 2013
other: Centrum chewable multi; calcium-vitD;
Derma-Smoothe for psoriasis rashes; Alrex, Zaditor eye drops for vernal conjunctivitis; history of asthma, ear infections
04-12-2013, 03:50 PM   #3
Senior Member
Mylittlesunshine's Avatar
Join Date: Dec 2012

My Support Groups:
Hi sh7895
My daughter is nearly diagnoised at age 3
I don't have any experience with meds
But wanted to welcome you to the forum
Hugs x x
Currently on EN
Neacate LCP
Calcium sandos
Inhalers x3
Pred tapering
04-12-2013, 07:12 PM   #4
Catherine's Avatar
Join Date: Jan 2012
Location: Melbourne, Victoria, Australia

My Support Groups:
Welcome, sorry you had to find us.

My daughter is currently on pred and aza. She also has a fistula, which is a small bowel to small bowel.

Currently she is symptom free and taping the pred.

I am sure other who understand the cost side of things will along shortly.
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)
04-12-2013, 07:24 PM   #5
my little penguin
Forum Monitor
Join Date: Apr 2012

My Support Groups:
there is remistart for cost as well as another program for cost after a year.
However - remicade is much cheaper than surgery- to be blunt.

remicade is covered by the medical side of insurance
humira is covered by the prescription drug coverage
for us remicade was free- humira will not be
DS - -Crohn's -Stelara -mtx
04-12-2013, 08:23 PM   #6
Senior Member
Join Date: Mar 2012
Location: California

My Support Groups:
Ugh! Don't the crossroads stink! Sorry you find yourself there.

Just want to ditto what others have said about the biologics.

Explain things to your doc. Perhaps she will lighten up and let you go to an infusion center closer to home. Definitely also look into the manufacturer programs. The Remistat program is not income based.

Good Luck!
Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Vit d 2000IU
Multi vitamin plus iron

Previously used - Prednisone, Prevacid, Enteral Nutrition, Methotrexate oral and injections, Folic Acid, Probiotics, Cortofoam

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohn's
Vit D 2000IU

Previously used, Exclusive Enteral Nutrition, Methotrexate (injections and oral), Folic Acid, Entocort,IBD-AID Diet
04-13-2013, 02:50 PM   #7
Forum Monitor
Mehita's Avatar
Join Date: Nov 2011
Location: Minnesota

My Support Groups:
Welcome to the Forum... sorry you had to find us, but glad you did. Lots of great resources here.

Quite honestly, I don't know much about Remicade or Aza, but if your doctor is pushing for Remi, there must be a reason, right? You could also get a second opinion if you really think there is an ulterior motive behind her pushing Remi so much. Does your pediatrician or family doctor have an opinion?

It sounds like the Aza isn't quite working well enough and Remi would be the next step, though Humira could be an option that you can do at home.

Is there a facility near you that can handle infusions? I believe it has to be a hospital type setting with nurses monitoring the entire infusion for emergency reactions.

Hang in there, Mom!
Mom of DS, age 17, dx Crohn's and Celiac Oct 2008
- Remicade, started Nov 2013
- added Methotrexate/Folate March 2016
- Multivitamins, Probiotics, Vit D
- Small bowel resection, Jan 2013
04-13-2013, 03:07 PM   #8
Senior Member
ChampsMom's Avatar
Join Date: Mar 2011
Location: North East Coast - USA

My Support Groups:
Hi there...

Sorry you are having to deal with all of this - it sounds like your plate is overflowing...

I do not have experience with the meds you are talking about - but I like the idea of getting a second opinion and a possible referral to someone closer to you for appointments that would need to happen on a more regular basis (maybe?)

Another idea and I have no idea if this is possible for you - but with such a large family might you be able to apply for additional state insurance for your son who has Crohn's? I don't know the rules for your state, but I know a lot of people who carry insurance from their work and insurance from their state. The personal insurance covers whatever it will cover and the state picks up the remainder (typically co-pays, extra costs with prescriptions, etc.). It might be worth looking into (especially since you said there are others in the house on prescriptive meds on an ongoing basis).

Good luck! God bless..

Mom of Champ (Alex)
Dx: CD April 2010
Meds: 04/25/13 switched back to Pentasa 3,500mg/day - Lialda brought lower abdominal cramps & exhaustion); 04/05/13 switched to Lialda 1.2GM 3 pills/day verse Pentasa 3,500mg/day, prevasaid 15 mg x 1/day, elemental iron, daily vitamin, calcium w/mag D, 50,000 mg Vitamin D/week, B12, B6 supplements, Cetrizine (for sinus issues)
Priesthood Blessings
04-14-2013, 12:27 AM   #9
Holding It Together
CarolinAlaska's Avatar
Join Date: Jan 2013
Location: North Central, Illinois

My Support Groups:
Yes, I would look into something like a KidCare or second level state insurance. It can be income based, but not as restrictive like medicaid (although the coverage is similar) and covers only the kids in your family, or your state might have a program for kids with chronic disabling conditions (in our state it was for kids with stuff like autism and seizures, but I think it is going to cover Jaedyn for her Crohn's too. It is not income based) It will cover her also until she is 18. Hopefully she'll be healthy by the time she hits adulthood, but if not, then hopefully she'll get disability insurance coverage that covers her because she was already disabled as a child... Anyway, some things to think about that are helpful. We'd be bankrupt by now if we didn't have that secondary state insurance!

I understand about your feelings about Remicade. I hope you can have a good talk with your GI and hear from her why she thinks it is so important. I honestly doubt that she is getting any secondary gain from prescribing it. I bet she just thinks it is the best thing out there right now for kids like yours. As for wanting your child to come there, it is because many things can go wrong during an infusion and she wants him to be where they will recognize it and no what to do with the reactions. I wouldn't want my child getting her remicade infusions here unless they did them regularly. I'm not sure I'd even want her to do them in Anchorage where there is a children's department in one of the hospitals unless I was assured by the peds GI that this was a commonly done infusion there. Thankfully she hasn't suggested that for us yet.

Hang in there. Your are doing the right thing by questioning these things and doing your own research. If for no other reason than to give you peace of mind before you move forward in any direction.
J's story:
*J, 18, Crohn's diagnosis 1-2013 (age13), intermittent NG feedings nightly.
Osteoporosis/osteopenia, Scoliosis, EDS, Asthma, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety, postural tachycardia/POTS and multiple food allergies.
04-14-2013, 02:40 AM   #10
Forum Monitor
Farmwife's Avatar
Join Date: Apr 2012
Location: Michigan

My Support Groups:
We, in the State of Michigan has Special Health Care for Chronically Ill Children. It does cover IBD.
We have very good private insurance and we pay dearly for it.
Still the "extra" cost of copays and such we killing us.
We heard about this special insurance (thanks QueenGothel)
and am so happy we have it.
It pays for EVERYTHING that has to do with her diseases.
It even reimburses for mileage to doctors.
The biggest blessing for us was we were able to drop down to cheaper policy and have the secondary insurance pick up the higher deductible.
Of course that means that if my hubby and I were to get sick or injured we would be in a heap of trouble. Thanks God we not farmers....oh wait....
I'm mom to............... Little Farm Girl 9 yr old
Ibd (microscopic)
dx Juvenile Arthritis
dx Erthema Nodosum
Bladder and Bowel Dysfunction
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 2 wks
MTX started AGAIN on 11/21/17
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine,
04-14-2013, 03:33 AM   #11
Forum Monitor
Sascot's Avatar
Join Date: Aug 2011
Location: Falkirk, United Kingdom

My Support Groups:
Sorry to hear about your son. The medications are such a minefield, not helped by the difference in the ways the GI's use them.
Our GI tends to start with Aza/6mp and then work his way up to Methotrexate and then Remicade, but I have read alot of others start with the stronger ones like Remicade to get the child into remission as soon as possible.
Good luck with your decision, it is not easy, but alot of children have had great results with Remicade on this forum.
04-15-2013, 08:42 AM   #12
Senior Member
Brian'sMom's Avatar
Join Date: Dec 2010
Location: Kansas

My Support Groups:
If you want to look into your state care for chronically ill your GI office should be able to help you get started with that. If you are having financial troubles this sounds like something you should look into.
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.
04-19-2013, 03:24 PM   #13
Join Date: Apr 2013
Location: Goshen, Indiana
I want to thank everyone for the responses and the support. It is a struggle at times, but I do know that we can figure out what's best if the doctor would be a little more understanding and more open to even discussing other medications with us or giving us exact reasons as to why (other than its faster and hits it hard) it is the right medication for my son. He seems to be getting over most of the complications, he has gained weight and the fistula is almost non existent now... So why not be open to trying something that doesn't have as many negative side effects?
I am thinking hard about getting a second opinion. Just not sure.
04-20-2013, 12:59 AM   #14
Super Moderator
DustyKat's Avatar
Join Date: May 2010
Location: New South Wales, Australia

I am so sorry to hear you are dealing with all this! It breaks my heart to hear it.

I can't advise on the system or programs you have in the US but obtaining a second opinion is never a bad thing even it only serves to reinforce what your current GI is doing. Unfortunately when kids are diagnosed with Crohn's it does tend to be more severe in nature and that may be the angle the GI is coming from but either way, does the GI understand your current circumstances? You may just have to be brutally blunt with her and tell her what you can and can't do/afford and see if a plan can be worked out. You can't help your circumstances and the doc needs to get their head around that.

It is normal to wean off the Pred but do you know why they decreased the Aza dose before upping it again?
What is your son's weight?

Have you looked into diet as a way of controlling symptoms?

Dusty. xxx

Crohn's Disease Forum » Parents of Kids with IBD » Confused/Treatment Options
Thread Tools

All times are GMT -5. The time now is 03:40 AM.
Copyright 2006-2017