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Crohn's Disease Forum » Parents of Kids with IBD » Finally decision taken towards Remicade


08-09-2016, 10:16 PM   #1
Lizette
 
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Finally decision taken towards Remicade

Hi, after years and years avoiding Remicade, it is time to give Michael a new medication, in the past 10 years he did good with 6mp, asacol, Flagyl, cipro, prednisone, a lastly Uceris.. For the past 8mobths is being ups and downs, until he got c diff in March.. So the only way to keep him stable is with Remicade, after reading, and reading, and having family and friends telling us he need it a treatment finally my husband accept the reality Andre are doing Remicade. The risk of not treating is worst than the side effects of it..some one told me in this forum. . After finally convince Michael who is 17 that that will help and he will be fine,, in the next 2 weeks I'm guessing will start. He had his last iron infusion today, they will stop it until he takes the 1at dose. He had the tb test drawn today. So I'm guessing 3days for results. His dr is on vacation, but he told his nurses Micahel need it Remicade and sooner or later we where going to call dr office at Childrens hospital in Detroit. Have some questions.
Micahel will be 18 May 31 2017. Are we going to need an adult dr after he turns 18, or should I look for and adult dr now?
I read here some kids take Benadryl before the infusion, is that normal, do I have to request for it.?
How long are the infusions? I read 3hrs is that right?
They said Remicade helps for fistulas, and he has a fistula in ano, superficial, and anal abscesses too. Wich they drain.. I raid Remicade can cause anal abscesses,
Once he is in Remicade he immune system is down, people say there life is back, I want that for Michael because at age 17 he is 85 lb 39 kilos and 5 ft 3 inches and half tall.. I'm not tall I'm 5 and my husband 5.5. , is he going to be able to travel out of the country. ?
So many questions I have ..
Does Humira work also on fistulas and abscesses?
Anybody with only anal problems that uses Remicade.. Does it help.?
Thank you for reading..
Lizette
Micahel dx 6 age 17 just Pentasa and florastor. Now.
08-09-2016, 10:39 PM   #2
Maya142
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Good luck!!

Here are our experiences:
No side effects with Remicade, except some tiredness after the infusions (and I think that was Benadryl honestly).

Some pediatric doctors see kids through college or till 21. You will have to check with your GI.

The infusions took us about 3 hours. We used Benadryl and Tylenol before the infusions but it depends on the doctor. I honestly am not sure it did much (except make them sleepy).

I have heard Remicade is used to treat abscesses, not cause them.

I hope Michael will grow and gain. Do they know if his growth is delayed? Has he had an x-ray for bone age?

We have traveled all over -- including to Mexico and India. No issues at all! We're just careful to wash our hands and have a plan in case things do not go well. We do take precautions with food and water in a place like Mexico, but that's really it.

Good luck! It's the miracle drug for MANY kids. And honestly, my girls didn't mind the infusions. It was a chance to relax and miss school and watch TV.
__________________
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
08-10-2016, 06:27 AM   #3
my little penguin
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DS remicade infusions took a little longer since the infusion nurses had to weigh him get blood pressure draw blood etc... First prior to starting the iv - the actual infusion part was about 3 hours but the first 3 ( loading doses ) they do extremely slowly.
No issues with being around others he was in 3rd grade with lots of coughing germy kids never sick like the other kids
Ds had rectal issues ( inflammation rectal prolapse ) which went way with remicade after a year of other meds.
No issues traveling either
Our Gi sees kids till 22 ( out of college ) but your Gi should have started a transition program

Ds was on Zyrtec and given Benadryl /Tylenol at the infusion
He slept during the infusion due to the Benadryl - he has had iv Benadryl for other reasons since and always falls asleep

It took every bit of three infusions and one week to see remicade kick in so 7 weeks
Ds never made it to 8 week infusions
After loading dose he starred to get symptoms again around 6 weeks so
They put him at 7.5 mg/kg every 6 weeks
Just realize most kids need higher doses - they burn through it faster
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DS - -Crohn's -Stelara
08-10-2016, 08:28 AM   #4
pdx
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My daughter took a while to respond to Remicade, but it's working well for her now. She's gained 45 pounds and 4 inches since starting it 18 months ago. Hope it works really well for your son!
__________________
Daughter E (15) dx with Crohn's 12/18/14 at age 12

Current treatment:

Remicade started 12/24/14 (currently on 9 mg/kg every 6 weeks)
Oral methotrexate restarted 12/2/16 (15 mg weekly)
vitamin D, folic acid, multivitamin, Prozac

Past Treatment
90% EN via NG tube 2/9/15 - 4/2/15
50% EN via NG tube 4/3/15 - 4/18/15
Supplemental EN via NG tube 5/7/15-6/19/15
Budesonide 3/3/15-6/30/15
Oral methotrexate 3/13/15 - 5/14/16 (15 mg weekly)
Topical clobetasol for Remicade-induced psoriasis
08-10-2016, 08:35 AM   #5
Tesscorm
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Our experience has been good as well. My son was 18 when he started on remicade.

Re adult GI - yes, it depends on your GI. My son was diagnosed and began treatment at a children's hospital but, when he turned 18, he had to transfer to an adult GI. Our pediatric clinic recommended and referred S to his current adult GI.

Suppressed immune system - my son left to go away to school a few months after starting remicade. He shared his dorm apt with 3 other boys, one of which had to leave school mid-year due to mono! My son did not get sick any more often than he had before remi. I do think, in the last year, he may have had a few more infections than usual (bronchitis, etc.) but, I've only noticed this recently and he's been on remicade for approx. 4 years. Also, recent testing showed his remi levels were high (so maybe he needs a reduction in dose??).

Frequency - as was mentioned above, my son's infusion cycle was also changed from every 8 weeks to every 6. Doesn't mean it's not working, just that some need it more frequently.

Travelling - has not been an issue. My son has travelled to Europe, the US and the Caribbean since starting remicade. The only issue is planning the trip around infusion dates. Infusion dates should not be changed by more than a few days.

A couple of other things...

Vaccines - once your son has started on remicade, he will not be able to have live vaccines. (I believe this is also the case with 6MP.) If your son is currently 'in between' meds, it might be possible to update his vaccinations. I found out by chance, that my son does not have full immunity to mumps even though he'd had all his childhood vaccinations. If I'd known that some people require 'booster' vaccines, I would have had his levels tested prior to commencing remicade.

And, if your son is small/thin, you might consider supplementing his diet with nutritional shakes. Many of the kids here do this and my son, at 22, continues to drink one to two shakes most days. He drinks Boost but there are different brands available. It will offer your son extra calories and nutrition.

Good luck!
__________________
Tess, mom to S, 22
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
08-10-2016, 12:03 PM   #6
positivemum
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Hi

remicade has been a miracle for my son ( now 17, 18 in Nov). He started on it Feb 2015 and hasn't looked back. A few days before the next one is due he starts to feel a little worse and stress is still a huge problem but it has given him his life back. he was on Aza before and has had two lots of steroid treatments. He also supplements with shakes ( fortisip here in the UK) and has both gained height and weight since he went on the regime. We started at 8 week doses but moved to 7 weeks. Good luck to you and hope it works quickly for him
08-10-2016, 02:08 PM   #7
Lizette
 
Join Date: Mar 2016
Location: Michigan

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Good luck!!

Here are our experiences:
No side effects with Remicade, except some tiredness after the infusions (and I think that was Benadryl honestly).

Some pediatric doctors see kids through college or till 21. You will have to check with your GI.

The infusions took us about 3 hours. We used Benadryl and Tylenol before the infusions but it depends on the doctor. I honestly am not sure it did much (except make them sleepy).

I have heard Remicade is used to treat abscesses, not cause them.

I hope Michael will grow and gain. Do they know if his growth is delayed? Has he had an x-ray for bone age?

We have traveled all over -- including to Mexico and India. No issues at all! We're just careful to wash our hands and have a plan in case things do not go well. We do take precautions with food and water in a place like Mexico, but that's really it.

Good luck! It's the miracle drug for MANY kids. And honestly, my girls didn't mind the infusions. It was a chance to relax and miss school and watch TV.
Thank you so much.. His growth is not delayed. My boys have been always under the curve, they have not fallen yet.. I'm not tall I am 5ft and my husband is 5.5 .. Thank you so much for your input Maya
Liette
08-10-2016, 02:10 PM   #8
Lizette
 
Join Date: Mar 2016
Location: Michigan

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DS remicade infusions took a little longer since the infusion nurses had to weigh him get blood pressure draw blood etc... First prior to starting the iv - the actual infusion part was about 3 hours but the first 3 ( loading doses ) they do extremely slowly.
No issues with being around others he was in 3rd grade with lots of coughing germy kids never sick like the other kids
Ds had rectal issues ( inflammation rectal prolapse ) which went way with remicade after a year of other meds.
No issues traveling either
Our Gi sees kids till 22 ( out of college ) but your Gi should have started a transition program

Ds was on Zyrtec and given Benadryl /Tylenol at the infusion
He slept during the infusion due to the Benadryl - he has had iv Benadryl for other reasons since and always falls asleep

It took every bit of three infusions and one week to see remicade kick in so 7 weeks
Ds never made it to 8 week infusions
After loading dose he starred to get symptoms again around 6 weeks so
They put him at 7.5 mg/kg every 6 weeks
Just realize most kids need higher doses - they burn through it faster
Thank you my little penguin, I will check with my Gi.
Lizette
08-10-2016, 02:21 PM   #9
Lizette
 
Join Date: Mar 2016
Location: Michigan

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Our experience has been good as well. My son was 18 when he started on remicade.

Re adult GI - yes, it depends on your GI. My son was diagnosed and began treatment at a children's hospital but, when he turned 18, he had to transfer to an adult GI. Our pediatric clinic recommended and referred S to his current adult GI.

Suppressed immune system - my son left to go away to school a few months after starting remicade. He shared his dorm apt with 3 other boys, one of which had to leave school mid-year due to mono! My son did not get sick any more often than he had before remi. I do think, in the last year, he may have had a few more infections than usual (bronchitis, etc.) but, I've only noticed this recently and he's been on remicade for approx. 4 years. Also, recent testing showed his remi levels were high (so maybe he needs a reduction in dose??).

Frequency - as was mentioned above, my son's infusion cycle was also changed from every 8 weeks to every 6. Doesn't mean it's not working, just that some need it more frequently.

Travelling - has not been an issue. My son has travelled to Europe, the US and the Caribbean since starting remicade. The only issue is planning the trip around infusion dates. Infusion dates should not be changed by more than a few days.

A couple of other things...

Vaccines - once your son has started on remicade, he will not be able to have live vaccines. (I believe this is also the case with 6MP.) If your son is currently 'in between' meds, it might be possible to update his vaccinations. I found out by chance, that my son does not have full immunity to mumps even though he'd had all his childhood vaccinations. If I'd known that some people require 'booster' vaccines, I would have had his levels tested prior to commencing remicade.

And, if your son is small/thin, you might consider supplementing his diet with nutritional shakes. Many of the kids here do this and my son, at 22, continues to drink one to two shakes most days. He drinks Boost but there are different brands available. It will offer your son extra calories and nutrition.

Good luck!
Thank you.
He has all his vaccines up to date, and you are right if I not mistaken Michael got hepatitis vaccines and he did not have it in his system, at least not enoughEven though he had them
( I'm sure was hepatitis, but I will check ) but they told us he did not need a booster.
He does takes neocate Jr. Shakes.
Thanks again
08-10-2016, 02:25 PM   #10
Lizette
 
Join Date: Mar 2016
Location: Michigan

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Thank you to each one of you. And a pray that all the kids do good with this medications. Hopefully in the near future something comes with not so many side effects. I will keep you posted once he starts his 1st infusion. Thank thank you. Love this forum, and you learned a lot.😚
08-11-2016, 01:03 AM   #11
MichaelaBrooke
 
Join Date: Aug 2016
Location: Mississippi

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It makes me feel good reading about all these positive experiences with remicade. I have questions myself and this answered some. I just took my second dose today. My first infusion took two hours, however, the beforehand paperwork took forever. The second they bumped me to an hour and forty-five mins. They give me a Tylenol and Zyrtec. They told me they used to give Benadryl, but people complained about driving, since it can make you drowsy.
__________________
Prednisone since April - currently tappering
On Remicade and Imuran 100mg
08-17-2016, 05:45 AM   #12
DustyKat
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Does Humira work also on fistulas and abscesses?
We havenít used Remicade here Lizette but was just picking up on your question.

Yes, Humira does work on fistulas and abscesses and generally Remicade does work well with perianal disease.
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Mum of 2 kids with Crohn's.
08-22-2016, 01:48 PM   #13
Lizette
 
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Location: Michigan

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Thank you. As a matter of fact he just started Remicade 1hrs ago so I hope he gets better from the perianal area. Soon
08-23-2016, 03:30 AM   #14
DustyKat
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Good luck Lizette, i hope all goes well with the infusions and your lad responds to the Remicade. Fingers crossed!
08-23-2016, 12:41 PM   #15
CrohnsKidMom
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I hope the infusion is going well. Remicade has worked great for my son. His results on paper showed he responded well even after the first infusion, but it did take a outlet months for symptoms to settle. Good luck!
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Son diagnosed with Crohn's March 2013, at age 8
08-23-2016, 04:30 PM   #16
Sascot
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Good luck hope it works great
08-26-2016, 03:04 PM   #17
Lizette
 
Join Date: Mar 2016
Location: Michigan

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Hello all. Thanks for your best wishes.
MIchael did good at the Remicade infusion on Monday. They gave him Tylenol and Benadryl before the infusion , that's the protocol at michigans Childrens. He did great, after the infusion he was tired and sleepy other than that good. He slept good through the night he told me he sweat at night. But nothing else. Now after the infusion he is going to the bathroom more, and more watery. He was already making formed stool. Is that normal. I can not say if is working of not, but he is eating better. He started school on Tuesday and he wakes up perfect on his own takes a shower and eats hood breakfast at 6am. So something has to be working right? His next infusion is sept 9 so I. Guessing I have to wait and see at least 2 or 3 infusion before seeing results.
His GI is going to write a prescription for next Remicade appt. to have them check his bloods level and everything else.
Do I need to check on something else.. He still have the urgency to go to the bathroom.
Thank you
Lizette
08-26-2016, 03:13 PM   #18
my little penguin
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It takes a while
So you need to be patient
Most need all three loading doses plus some more time
08-26-2016, 03:21 PM   #19
Maya142
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Took my daughter 3-4 infusions and we had to increase the dose and frequency before she felt "good." So it may take some time.

Both my kiddos got Tylenol and Benadryl before the infusions and I think that's what makes them tired and sleepy after the infusion.

Good luck!
08-26-2016, 09:44 PM   #20
Farmwife
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It took almost a whole year for my girl on Remicade.
It was a hard year but she's finally getting better.
Hang in there.
__________________
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
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