01-15-2013, 01:00 PM   #1
MChilders
 
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Help/Advice

Warning: This will be long!! I have joined this forum to try and help my son. His name is Austin. Austin is 14 and been sick since he was about 5-6. He started out being diagnosed with severe UC he has been treated with everything from Azithiropine,Cipro, Flagyl, Colazol, Entocort, Methotrexate, Remicade and Cortifoam and this is not all I just can't remember all of them. Everything Failed! In March of 2011 his entire colon was removed and a J-Pouch created In June 2011 they completed his take down surgery. By the following April of 2012 he was sick again. And rediagnosed with moderate to severe Crohn's. We started Cimzia and Methotrexate , In Oct. 2012 he was still just as sick> It never worked. He had lost to 89 lbs. Started Predisone at 40 mg. again and feels miserable. The stomach pain and headaches are the worse. Doesn't sleep well, fatigued, dizzy, and no energy whatsoever, he is under the hospital homebound program from school, so he doesn't get regular interaction with his friends so he has a small amount of depression. No amount of education to the teachers makes them understand how sick he is. They see his moon face and can't understand how bad he feels. They do not understand that bathroom trips cannot be controlled. He is not eligible to try the Tysibri, and his doctor is pushing for the Stelara but all kinds of problems Insurance says not approved, we submitted for the patient assistance with Johnson and Johnson and were denied ( they said our insurance covers it) went back to insurance company and were told all we need to do now is order the drug. So we will see. As of now however he is miserable. His weight has ballooned to 140 lbs and one minute he is happy, the next mean and ill tempered, then sad and crying. The predisone is horrible. He takes Lomotil and Immodium to help control the severe "D" he has and a very old drug called Carafate rectally to try to line and coat the walls of his J-pouch to try and help the ulcers and irritation. Is there anyone else here that has a child his age or any helpful and educational information for a child to begin Stelara? All these drugs scare me beyond anything I can imagine but the sickness and the quality of life he lives every day scares me just as much. I keep thinking everything we have done will make him go into a remission. We would love to see this happen but he has never been in a state of remission. It doesn't help either that the other side of his immune system doesn't work at all. He does not produce any antibodies that help fight infections. He sees and Immunologist/Allergest and receives IVIG infusions once a month for this problem. On an upside since he started this medication he doesn't get sinus infections, ear infections or colds anymore. It worries me that he takes a medication that boosts his immune system and all the medications used to treat Crohn's lower your immune system. I have asked all of his doctors about this and never gotten any straight answers. They all tell me that one will not affect the other. Or that it shouldn't. Anybody else here have any of these same issues? Any help or information to offer? I feel like sometimes we are alone in this battle.
01-15-2013, 01:48 PM   #2
Jenn
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Welcome to the forum and I am so sorry to hear about your son. What a wringer you two have been through! I do not have the same experiences but wanted to give my support to you to hang in there and glad you have found this forum. I hope you can find something that works for him, I really really hate this disease!

For your son, look into the CCFA website for teens http://www.ucandcrohns.org/
it may help him feel less alone and normal. Best of luck to you.
__________________
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
01-15-2013, 01:57 PM   #3
jmckinley
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Bless you. I am so sorry that things have been so bad with your son's illness. You are not alone in this, even though I know the feeling you are talking about very well. I've wondered about that taking immune-boosting stuff at the same time as wanting to suppress the immunes system too. I always thought that was why they gave my son the shortest round of antibiotics possible to avoid starting a flare.

We haven't had any experience with most of the drugs you have mentioned. My son took 6mp, failed remicade and is on methotrexate now. Have you stopped that? Prednisone is a beast! My son is 15. He was on prednisone once and had full moon face. We did a tour of the football locker room at Alabama and I took some pics. I posted them on facebook and some kid we don't even know wrote "You look weird". Ugh! The nerve...who raised that kid? He was called chipmunk for a whole school year, even when the swelling went down. That kind of stuff added to the embarrassment of this disease doesn't help their mood which makes symptoms worse. And the medicines affect them too. It's an awful cycle.

I know there are some other parents who will come along that have had more experience with the meds and surgery that you have experienced. Other things I can think of are Enteral Nutrition (like boost). Look into low dose naltrexone. We haven't done it because our GI won't try it, but some others have been successful. Also, is Austin taking a probiotic, fish oil? Maybe even an anxiety med or anti-depressant? I know you want to consider another drug but depression could make a flare worse.

Sorry I am not more help. I wanted to offer you some support more than anything else. I hope things get better soon!
01-15-2013, 02:05 PM   #4
NMMom
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I'm so sorry I don't have much to add. I wish I could reach out and give you a big hug. Your sweet son, and you!, have gone through so much. Is it possible to consult with another group of doctors and get more opinions? I'll be keeping you in my thoughts. You've come to the right place for understanding.
01-15-2013, 02:49 PM   #5
MChilders
 
Join Date: Jan 2013
We've spent a small fortune on the whole probiotic program and there was absolutely not one difference in the way he felt and did not make anything any better. We've tried different diets, removed dairy products for a while absolutely nothing has made any difference in this psyco disease!!! Our doctor is kind enough that he has consulted with not just a couple of different doctors but many of them along the way.

Last edited by MChilders; 01-15-2013 at 02:52 PM. Reason: Adding additional comment.
01-15-2013, 03:13 PM   #6
Tesscorm
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I am so sorry to hear of how much your son and family have gone through! I can only imagine your frustration and worry. I wish I had some solid advice to give you but I can only make some suggestions and offer you lots of support. I'm glad you found this forum, I'm sure you'll find many members and parents with lots of experience and knowledge!

Here is a link to the forum wiki on Stelara, this page will also link you to other threads discussing Stelara:
http://www.crohnsforum.com/wiki/Stelara-Ustekinumab

Something different to consider is a stem cell transplant. There are, at least, two members here who have undergone stem cell transplants. Here is a link to Effdee's thread where he has shared his experience (and he is currently doing well!).
http://www.crohnsforum.com/showthread.php?t=16284

Enteral nutrition - you mention trying different diets but Enteral nutrition is a liquid only diet that has comparable success at inducing remission as do steroids. It's often the first line treatment option (especially for children) around the world but less commonly used in the U.S. (not sure why as it is in no way an 'alternative' treatment). However, it's not as successful at maintaining remission. It what my son used to achieve clinical remission and (at maintenance dose) has kept him symptom free for over a year (we are looking to add meds now though). Here are links to the EN forum and to a thread in the parents' forum.

http://www.crohnsforum.com/forumdisplay.php?f=161
http://www.crohnsforum.com/showthread.php?t=36345

I believe Low Dose Naltrexone (LDN) was also mentioned above. There have been three small trials on LDN which have shown promise, however, as the trials have been small, it seems most GIs aren't interested in considering this as an option. But, there are a number of members here who have found success with it!

http://www.crohnsforum.com/forumdisplay.php?f=32

I hope some of this info can be of help to you!!!

Thinking of you and sending lots of hugs!
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Tess, mom to S
Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
01-15-2013, 10:26 PM   #7
kimmidwife
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Hi and welcome to the forum. I don't have much to add but just wanted to send some hugs. The others have given some great advice. It sounds like your son has been through a really rough time. It is a good question if the immune boosting drugs would interfere with the crohns drugs. It might be a reason to look into LDN. It works differently then some of the other drugs. It has helped my daughter immensely. She too failed many different treatments prior to this.
__________________

Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
Fail Remicade Jan 09
Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.
01-15-2013, 10:43 PM   #8
Jmrogers4
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Oh Dear! What a trial you and your son have had. I hope that you can find something soon that will help induce remission. Tesscorm gave you some great leads to start looking for answers. My son is 13 and we like Kim's daughter are on LDN and have had some great success. I just wanted to offer lots of support and this is a great place to find answers and more.
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Jacqui

Mom to Jack (18) dx Crohn's 2/2010
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
01-15-2013, 10:57 PM   #9
Amber82
 
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Hi and welcome! I dont have anything I can say to help except you came to the right place. If there is a person who might be able to push you in the right direction its here! I know you are having a hard time right now but wow what a great mom you are! I'm 30 and found out that I had crohns at 23 but the Dr. are pretty sure I have had it at least since high school because of how bad it was when they did my surgrey. But I dont know where I would be with out my mom and dad! So big hug to you and your son! I hope you find answers soon! Good luck!!!
01-16-2013, 03:22 AM   #10
Patricia56
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My heart goes out to you. It sounds like your son is in a lot of pain. And it doesn't help that his situation is very complex.

If you feel confident in the immunologist he is seeing then I think you should trust in his judgment that the medications being prescribed for the Crohn's won't cause more problems for your son. The immune system is a very complicated thing with many interconnected parts that operate independently from each other some times and together at other times. It may be that the things that are "off" with your son's immune system are a completely separate part of the system from the part that will be affected by the Crohn's meds.

I am also curious to see if you have tried exclusive enteral nutrition and what the results were. If you haven't tried this then I would strongly urge you to try this next or alongside further medical treatment. It can make a huge difference in symptoms in as little as 2 weeks.

If you have not already gone to one of the major Pediatric IBD centers for a 2nd or 3rd opinion then I think you should do that. I realize your son's doctor may have consulted many other doctors but if you can swing it to go to Children's Hospital of Philadelphia (CHOP), Mayo Rochester, Cedar Sinai, Cleveland Clinic to name four of the national network of ped IBD centers I think you would not regret it.

As far as I know CHOP is still the largest Ped IBD program in the world. They see more than 4000 ped IBD patients every year. The advantage to going to CHOP or one of the other large centers is that they have seen it all. They have seen complex cases like your son's before so they don't have to completely re-invent the wheel. They have the ability to pull together specialists from multiple disciplines to come up with a diagnosis and treatment plan.

This is not to say that your son's current doctor is doing something wrong or is a bad doctor. It's just that a fresh set of eyes could not hurt at this point I think.

Since Stelara affects a different part of the immune system from the other biologics he has tried it seems reasonable to hope that it will help him.

Using liquid nutrition (EN) to help him bridge the six weeks or longer before the Stelara kicks in might be one strategy worth considering.

You are not alone, sadly. I am glad you found this forum and hope the support you find here is helpful.

Peace
__________________
Badger, 18, CD, overall great guy
Dxd age 10, 2006 after nearly 1 year of active sx
Current CD meds: Remicade, Methotrexate and Omeprazole, Vit. D, Calcium, Folic Acid, Probiotic

Nothing I say here should be construed as medical advice. I am not a doctor. These are just my opinions.
01-16-2013, 03:33 PM   #11
MChilders
 
Join Date: Jan 2013
Austin's hospital is Children's Health Care of Atlanta and his Dr. is with Childrens Center For Digestive Healthcare in Atlanta as well. They are highly connected to the Crohn's Colitis Foundation. Just received phone call from the pharmacy that would be sending the Stelara to us and of course now our insurance company has yet again denied coverage after adamently telling the doctor that it would be covered and Johnson & Johnson has turned down the patient assistance that they offer because the insurance company verifed with them that it is also covered. So I've got the insurance company stating they will cover this medication and then when it is ordered they say oh we can't cover this so now back to no help at all.
01-16-2013, 03:40 PM   #12
Patricia56
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It may be a case of the right hand not knowing what the left hand knows.

When my son started Humira we had a similar problem. I don't know if our experience applies but I'll share it in case it's helpful.

The way things work for us is that we have a medical group that handles most of the medical expenses at the local level. Then some things, including injectable drugs, are handled by the actual insurance company.

When we tried to get authorization for the Humira the medical group denied it because they said injectable meds weren't covered. Idjits. That's when our pediatrician got involved and his referral team got things straightened out.

Not only did the insurance company have to approve the medication directly we had to order the medication directly from the mail order pharmacy that they chose. We could not use our local pharmacy at all.

So the devil may be in the details. Good luck straightening it out.

And Children's in Atlanta is a terrific hospital. Sounds like you are getting excellent care in a difficult situation. You still might ask your doctor if there's anything to be gained from getting a 2nd opinion anywhere else. Fresh eyes and all that.

All the best
01-16-2013, 06:14 PM   #13
Livilou
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My heart goes out to your son and your entire family, I am so sorry that he is suffering...this disease is horrible. I don't have advice, but I wanted to let you know that we are in a similar situation(medication) with my 17 year old daughter. Liv was diagnosed with thyroid cancer while on Humira, and some of the top docs that we consulted with do not think it is a good idea to restart anti-TNF biologics. Her CD is getting active and scopes/testing show inflammation and progression of disease. We are also trying to get Stelara approved as per our most recent consultation at Mt. Sinai Hospital. I am worried that we will be facing the same insurance/pre-approval issues. I am praying that all these issues will be resolved quickly for you, and that the Stelara will bring Austin some relief! You are in my thoughts...you have come to the right place for support, this group is the best!! Kim
01-16-2013, 06:51 PM   #14
xmdmom
Senior Member
Hi MChilders,

Hugs to you and Austin. It sounds like it has been very rough and I hope things will be improving soon.

I found this that IVIG has been actually used in Crohn's http://www.sciencedirect.com/science...68997212000961
This article concludes "The small number of studies available consistently shows that IVIG treatment in the setting of aminosalicylate- and steroid-resistant CD can bring about a rapid and clinically significant improvement in patient condition, typically within days of the initial administration."

However, I have no idea about how IVIG might interact with the other drugs he's been on.
01-25-2013, 04:39 AM   #15
DustyKat
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Hi MChilders and

I'm sorry I am late to this... My goodness, you certainly have been and continue to go through so much. My heart goes out to you and your lad, bless him.

I can't add to the fab advice you have already received. Have you managed to get approval for Stelara or any help from the company?

Thinking of you.
Dusty. xxx
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