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05-14-2014, 12:02 PM   #1
lisaellisha
 
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Feel so helpless

My son was diagnosed with Crohns in December. He was put on Imuran and Acid blocker (Previcid) and Prednisone. The Prednisone made his face blow up like a balloon. However, the did get better. Once Predinsone stopped his face did return to normal.

He was then put Imuran for maintenance. Unfortunately, since I HATE having to give my child so much medication, I stopped giving him his meds for 3 weeks. Needless to say, he flared again.

When he flares, he vomits (he doesn't have a problem with loose stools). Now the doctor has put him back on acid blocker and may possibly put him on Remicade.

I hear good and bad things about Remicade. I feel so helpless because I don't know what to do at this point. It's obvious that he will have to be on medication but at what cost?
05-14-2014, 12:14 PM   #2
theOcean
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Unfortunately, while it is true we need to be on a lot of medication -- it's because we need it. Keep in mind, too, that if he ever gets into remission it's still important that he stays on it lest he go into flare again.

I've been on Remicade/Imuran as well as a combo of Humira/Imuran if you have any questions. Remicade works incredibly well for people, though I find that Humira has a much lower chance of side-effects (since Remicade is from mouse protein and Humira is from a humanized protein). Either way, if he does go on it, I hope it's successful for him.
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Diagnosis: Fistulizing Crohn's, 2011 (originally Dx as Ulcerative Pancolitis)
Past Medication: Pentasa, Remicade, Prednisone, Imuran
Current Medication: Humira (biweekly), 100mg 6mp
Unrelated Medication: 36mg Concerta, 75mg Pregabalin
Currently: In remission!
05-14-2014, 12:15 PM   #3
theOcean
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As well, try to remember that untreated Crohn's is actually far more dangerous than any treatment for it is.
05-14-2014, 12:52 PM   #4
SupportiveMom
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Lisaellisha getting this diagnosis for my daughter was the hardest thing I have ever faced, and I have been through a lot. Something about it being your kid makes it harder to deal with than if it was yourself I think. Big hugs.

The drugs stink. The disease stinks worse. Skipping or not taking the drugs can make things more problematic than if you continued consistently. As you can see by my signature I have had to give my kid way too much medication, but we haven't found a treatment that works for her. The drugs sound scary and come with potential issues, but without them I know my kid wouldn't be alive today.

Let us know what happens with the Remicade. Hope things turn around soon!

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Mom of 16 yr. girl w/Indeter.Colitis Sep. 2012(age 11) Nov.2012 Crohn's Sep. 2014 Crohn's Colitis, UC Nov 2015, Crohn's Feb. 2016

Ileostomy surgery July 2015

Current Meds: None!
Previous Meds: Humira, Remicade, Methotrexate, Cipro, Flagyl, Zofran, Cortifoam, 5-ASA suppository, Questran, Mezavant, EEN (Peptamen Jr. 1.5) by NG tube, Antibiotic Cocktail (Vancomycin, Metronidazole & Doxycycline), Simponi, Prevacid, Imuran, prednisone
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05-14-2014, 12:54 PM   #5
lisaellisha
 
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Thank you so much for your support. But the thought of "MOUSE" protein is totally grossing me out!

The bad thing is, I guess he WAS in remission. He stopped the prednison and was only on Imuran and seemed to be doing fine. His levels were up and everything. But again, since I thought he was okay, I let him stop the medication. I now know to NEVER do that again.

He is 9 and has a hard time taking pills so they have them broken down into liquid.
05-14-2014, 01:54 PM   #6
Jmrogers4
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Welcome lisaellisha,
My son is currently on remicade and is doing fabulously well on it (in fact much better than Imuran) as you found out the hard way it is the medicines that keep the Crohn's under control.
Humira is another one you could ask the GI about. It works similar to Remicade but is made from human proteins instead and is given through a bi-weekly shot. Remicade is an infusion given every 8 weeks (can be 4-7 weeks though depending on how they metabolize the medicine, my son goes every 6 weeks). We call it his mighty mouse juice and even had temporary tattoos made up with mighty mouse and powered by remicade for his infusion days.
Where is his Crohn's located?
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Jacqui

Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
05-14-2014, 01:56 PM   #7
SupportiveMom
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I hear ya on the mouse protein. eww... don't be hard on yourself for letting him stop. At least you know now what it can do & why this is a long term thing. I am sure some others will chime in on tricks for pill taking. My daughter was 11 when she started with prevacid & prednisone and had no issues with them. I know it is probably only because we just started the transition to pills for tylenol versus liquid suspension. Even thought the pills were disolvables I think it helped her mentally take them.
05-14-2014, 01:56 PM   #8
mish2575
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If it is any consolation Remicade worked best for me, out of all the biologics. I took it from age 20 to 34. I had no lasting effects (that i'm aware of) and have had two healthy children.

Also there are many drugs that are commonly used derived from animals such as Heparin and Insulin.
05-14-2014, 02:02 PM   #9
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My daughter was diagnosed in December as well. We're on Imuran and raniditine (zantac) and likely on it for life. But it works. We have our girl back. The medication sucks but like others have said, the disease sucks far worse. I'm so grateful we have access to medications that can combat Crohn's. It's a huge adjustment and it can be an uphill battle getting them well again, but it sounds like you're well on your way to figuring things out.
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Heather - Mama to Jack and Madeleine (Crohn's diagnosis Dec '13)
Medications: Imuran (2.5 mg/kg), Raniditine, multivitamin, iron and vitamin D.

The Bravest Journeys Are Never Taken Alone
05-14-2014, 02:03 PM   #10
CrohnsKidMom
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Welcome to the forum, but sorry to hear of your son's dx. My 9 yo son was dx'd last yr at age 8. I was as afraid of the drugs as the disease itself. I thought maybe we could treat it naturally or exclusively through diet. The good folks on this forum helped me see the necessity of the drugs. It is a bitter pill to swallow (pardon the pun), but it is reality. My son is on methotrexate injections and we've not had any experience with Remicade or Humira. But we'd probably be astonished if we knew what was in most drugs! Take care and I hope your boy gets back into remission soon.
05-14-2014, 02:03 PM   #11
lisaellisha
 
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Thank your your insight.

I hate the fact of knowing that he will have to have medicine intravenously but if it helps him to "appear" better than so be it.

I feel like he has been given a death sentenance. He will have to be on medication for the REST of his life and the medication he takes can't even guarantee that he will remain better. AND the meds will give him potentially FATAL side effects (I read about how the meds can cause cancer).

He is only 9 years old and I feel like he will never be okay again.
05-14-2014, 02:23 PM   #12
Momtotwo
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lisaelisha,
Another new member here, and I can relate to your fear of the medications. I'm a mom who rarely gives her kids ibuprofen because I don't like medications. I have to work through this process and it seems that, at this point, I don't have a choice. I think I have to accept the medications and hope he is a lucky kid who responds well with minimal side effects. And hope that new treatments are coming out. When my dad was being treated for cancer, his oncologist told me she thinks biologics will change the treatment of many diseases in the future. At the time, I didn't know it would matter so much personally and didn't know my child's future would be affected by that research.

Did you read about EEN? I've only read a little bit at this point.
05-14-2014, 02:29 PM   #13
Maya142
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Hi Lisaelisha,
Like many of the other parents on here, I was horrified to think about putting my kids on meds for life. But at some point you realize that the disease is much worse than the medications, and though there are some very nasty side effects, those are pretty rare. I'm going to tag Mylittlepenguin, she has some good statistics on the probability of cancer.

Both my daughters have been on biologics for years, and actually those are the only drugs they haven't had side effects from. My older daughter has completely gotten her life back from being on Humira and methotrexate, and is pretty much a normal college student. My younger one has had a harder time but it is improving on Remicade. I don't know where they would be without these drugs.

It's a huge adjustment and takes a while to find to your new normal. Good luck!
__________________
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
05-14-2014, 02:35 PM   #14
theOcean
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Thank your your insight.



I hate the fact of knowing that he will have to have medicine intravenously but if it helps him to "appear" better than so be it.



I feel like he has been given a death sentenance. He will have to be on medication for the REST of his life and the medication he takes can't even guarantee that he will remain better. AND the meds will give him potentially FATAL side effects (I read about how the meds can cause cancer).



He is only 9 years old and I feel like he will never be okay again.

It's not a death sentence! I managed to get into remission and I feel amazing, like I don't have an illness at all. I just have to take more medication than most people. And if that's the price... that's fine, I'm all right with that.

The side-effects I've honestly learned to gloss over, because realistically they're very low. 1:10000 with just a biologic, and 4:10000 if you add an immunosuppressant. And if you add a biologic at a younger age, it's said that the illness may be more mild later on. You just have to learn to be hypervigilant and jump on symptoms when you see them.
05-14-2014, 03:58 PM   #15
DJW
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Hi lisaellisha. I just want to send you and your son my best wishes.
The early days can be overwhelming. I was diagnosed young but had a twenty year remission. Hang in there. Educate yourself.
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Crohn's Disease
DX 1978 (12 yrs old)
Ileostomy at 19

Visit Crohn's and Colitis Canada:
http://www.crohnsandcolitis.ca/site/...tis_Canada.htm

Living in Ontario with no drug benefits?

Trillium Drug Program:
http://www.health.gov.on.ca/en/publi..._trillium.aspx

Dave
05-14-2014, 06:45 PM   #16
Brian'sMom
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DJW, what do you attribute to your 20 year remission? I see you had an ileostomy at age 19. My son just had one at age 14 because we couldn't get to remission no matter what we tried. Is that what helped you? And do you still have it or has it been reversed?

lisaellisha, I can totally understand your fear of the meds. That too was one of the hardest things for me. I never gave my kids anything... rarely a tylenol etc. I think about down the road... and what the meds will do to organs, immune system... etc. But then I think what the crohn's will do and I am thankful for the meds!! Hang in there. And keep hoping for a CURE!! Its coming !!
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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.
05-14-2014, 06:54 PM   #17
DJW
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Hi Brian'sMom. Honestly, if I knew I'd bottle it and give it to everyone. None of the meds worked...surgery eventually got me into remission. I've been flaring for the last 2+ years. Thankfully it's limited to the stoma and last couple inches of the intestine.

Mine is permineny. I have about a metre left so surgery isn't an option anymore.
05-14-2014, 07:01 PM   #18
Brian'sMom
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How does a stoma flare? Ulcers on it? I'm new to all of this ileostomy stuff!!
05-14-2014, 07:11 PM   #19
DJW
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Please ask anything you want. I'm happy to help anyway I could.

The stoma is dark dark red on one side. With an ileoscopy the doctor could see white ulcers. Everything else is clear.

Btw-when healthy I lead a full active life. Post secondary education, work and lots of sports including cycling, golf, baseball, and hockey. The ileostomy really did give me my life back.
My biggest mistake. Trying to deny I had crohns and an ileostomy. Body image can be an issue.

All the best.
05-14-2014, 08:06 PM   #20
my little penguin
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DS was 7 at dx.
Things were very tough in the beginning .
DS learned to swallow pills at 7.
Ccfa has a good sheet on how to.
DS can now swallow about 7 pills at once .
Remicade was the best for DS .
DS and his dad made a special trip
Stopped at the gift shop got goodies watched movies etc...


Things go back to a new normal soon.
Crohn's disease is evil and can be dealt when untreated.
Google what bowels look when they are removed from Ibd .
That is what your trying to stop.
The image helps with the scary drugs.
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05-14-2014, 08:29 PM   #21
lisaellisha
 
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It's so hard. He just threw up AGAIN. Did it twice at school today. How can I keep meds in him if he keeps vomiting?!!!!
He is so weak. Hopefully, the REMICADE will help.
I pray it does.
05-14-2014, 08:43 PM   #22
my little penguin
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Did the doc give you zofran to give?
DS uses this when he starts to flare since he vomits as well.
05-14-2014, 09:25 PM   #23
Farmwife
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My Grace takes zofran. It helps a lot. She takes the kind that dissolves under the tongue.

I'm sorry it so hard right now. I hope he improves quickly.
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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
05-14-2014, 09:48 PM   #24
Mehita
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Might he have a stricture? My son vomited a lot because of one. Where is his disease located?
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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
05-14-2014, 10:30 PM   #25
awmom
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Welcome....you will find so much info and support on this forum. When my son was diagnosed at age 14 they put him first on a non systemic steroid, then prednisone, then Pentasa, followed by an immune suppressant and then Remicade, finally he needed surgery to remove a stricture and remains on remicade. This long story to let you know that I balked at and freaked out about each new med. Now I can't help but think that if they had moved to the remicade more quickly he might have avoided the surgery. It is so difficult to know that your baby has to be on these meds for life, but they really are necessary to hopefully avoid damage to his bowel. It took me a long time to really internalize this.

I hope they find a med that works well for him soon. The remicade treatments are not traumatic, just a little lengthy. When a med starts working and you see your child feeling better you will relax. It just takes time to accept and come to terms with. Let us know how he does!
05-14-2014, 10:48 PM   #26
Brian'sMom
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It's so hard. He just threw up AGAIN. Did it twice at school today. How can I keep meds in him if he keeps vomiting?!!!!
He is so weak. Hopefully, the REMICADE will help.
I pray it does.
My son vomited a lot when flaring. It was caused by the cramps for him. The cramps were so intense- everything would come up. It was just how he handled the pain I guess. The Zofran didn't help with this because it happened only when he went poo... zofran is for nausea and of course didn't stop the cramps. His GI staff would give lots of suggestions. Each flare... when we got the cramps under control... the vomit stopped... every time. Right before surgery.... even water would cause cramps. I would worry it was a stricture... but for us it wasn't.

Last edited by Brian'sMom; 05-15-2014 at 02:53 PM.
05-15-2014, 12:07 AM   #27
cre
 
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My son was diagnosed 6 weeks ago, 2 months shy of turning 3. He just had his 3rd remicade infusion and he is tremendously better. There is hope!!!!! I crush his steroid, mix it with liquid and give it to him in a oral syringe. He always has a chaser of water ready. I hope it works well for him and he is feeling better soon.
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05-15-2014, 08:07 AM   #28
Sascot
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Hi and welcome. I also didn't want to give my son meds, so out it off for 6 months which ended when he needed an operation on his bottom. So now he is on Mercaptopurine and doing well. We can only try to make the best decisions we can. Hope the Remicade works well for him.
05-15-2014, 11:41 AM   #29
lisaellisha
 
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AWMOM

This helped so much. We are getting treatment now. I hope he feels better soon.
05-15-2014, 11:42 AM   #30
lisaellisha
 
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Has anyone changed their childs diet to glutten free?
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