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Crohn's Disease Forum » Parents of Kids with IBD » Start Infliximab on 11th March!!


 
03-05-2013, 07:38 AM   #1
Bubbly
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Start Infliximab on 11th March!!

Well after doing reasearch we have decided to go the Infliximab route!

It is a huge step for us and after reading through the threads it is a big step for everybody on here. The other choice was steroid treatment, but this is short term only, and the side effect where awful for my son.

Mostly positive stories and the odd one where things after worked out for one reason or another, so we are going for. We chatted as family about it, looked on recommended websites, gave son print outs, which he read on his own, his choice, then later came to us with questions. Spoke to our IBD Nurse yesterday, who answered every question, so we said yes to go ahead, thought we would have a long wait, but nope next Monday!!

Hubby wants to come with us for the first one, so he can see whats going on and in case there is any problems and be supportive for our son, which is good.

So son still at home as poorly with constant tummy pains, constipation, so taking 6 sachets a day of movicol, things seem to be moving! Been told this is something we are going to have to keep an eye on as infliximab can cause constipation!! Any ideas to a natural solution for this? Hate all the drugs/chemicals going into my son, just thought if anybody else had the same problem and found a good solution?

Thankyou all for your support and will update on Monday when finished at hospital! x
03-05-2013, 09:24 AM   #2
Tesscorm
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I hope all goes well! Having just made this same decision, I can certainly appreciate how difficult it is to get to this point!

Re the constipation, this hasn't been a big problem for my son but, on the occasions when it has happened, we've found that prune juice works really well. He didn't need lots of the juice - I gave him, maybe, 1/4 cup and, if necessary, a bit more later in the day.

Interesting re remicade causing constipation... I hadn't heard that before - will have to keep an eye on it. Thanks!

Good luck on Monday!
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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
03-05-2013, 09:37 AM   #3
bigtruck
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Hi are they going to start your son on an immunosuppressant like 6mp as well as the remicade?
03-05-2013, 11:34 AM   #4
Jmrogers4
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Good luck Bubbly, sending loads of hugs!
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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
03-05-2013, 01:58 PM   #5
upsetmom
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Good luck
03-05-2013, 03:16 PM   #6
Bubbly
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He is currently on azathioprine, i from what i understand this will be reduced at some point. As everything has happened so quick, and the consultant is on holiday this week, will get all the med details on monday when we go in. Apparently he will take steroids before the infusion.

Will update monday when i have all the details to hand and written down!

The consultants, nurses always speak to flippin quick, its alright for them they use the words day in day out, however for novices like me i need things said slowly and written down is even better!! Makes me feel old saying that!!

Main thing is he starts on monday, he is currently feeling awful, very low mood at the moment, fed up with life i think, constant tummy pain, and all he wants to do is sleep, also developed today a sore on the corner of his mouth, when he has had this its due to low iron, which has been a problem before, which also explains alot.

I really am trying not to get my hopes up to much over this treatment, but at the same time i am really really hoping this works for him, just want him feeling better and out of pain, not fair to be in constant pain, dont have any stronger pain relief at home and he doesnt really grumble about it, just whenever i ask he says it hurts, as normal!! Shouldnt be normal!!

Fingers crossed for Monday x
03-05-2013, 03:36 PM   #7
bigtruck
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Good luck azathioprine and remicade are often used together, I had a good 5 years on remicade before I had to stop it and it worked well for me.
03-05-2013, 03:43 PM   #8
Sascot
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Just wanted to wish you lots of luck. I really hope it works well for your son, so he can start to feel better! My daughter gets constipated - she takes Movicol or Lactulose - I prefer the lactulose to the Movicol but the docs seem to prefer the Movicol
03-05-2013, 03:50 PM   #9
Bubbly
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Currently on 6 x movicol a day, havent come across lactulose, is it liquid or similar to movicol? Will look into before monday so i have details to hand.

Thankyou all for positive feedback x
03-05-2013, 04:05 PM   #10
Sascot
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You can get lactulose in the pharmacy over the counter. It is a liquid - I mix it in with some diluting juice/water - the quantities are on the instructions on the bottle. Or if you don't want to pay for it, the GP can prescribe it.
03-05-2013, 04:28 PM   #11
Brian'sMom
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Main thing is he starts on monday, he is currently feeling awful, very low mood at the moment, fed up with life i think, constant tummy pain, and all he wants to do is sleep, x
24 Hours after my son's first infusion of Remicade he yelled from the bathroom, "I LOVE Remicade!" He also had been in so much pain prior. He's currently on Humira (Remicade's counterpart) because of an allergy to Remicade. I think your son will get his life back with taking a tnf blocker biologic. I hope Remicade is his magic because its only every 6-8 weeks. Best wishes for good days ahead
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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.
03-05-2013, 04:35 PM   #12
Tink572
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We just got back from my son's Remicade infusion. He's been on it a little over a year now. I think it's great that your husband is going with you. I normally take my son for his infusion, but about 4 months ago my husband happened to be off work on the day of the infusion so I had him go instead so he would know what to do/expect in case I couldn't take him. I don't think he'll every volunteer to go, but at least he knows what it's like!!

I hope Remicade works well for your son and he gets quick relief with it!
03-05-2013, 05:49 PM   #13
my little penguin
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Remicade actually stops DS 's constipation.
After the loading doses ( 3)
Any time he now gets an infusion twenty-four hours later
Everything is going good .
Good luck
DS loves remicade
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03-06-2013, 04:34 AM   #14
Bubbly
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Wow, sounds really positive, and thankyou once again for the encouraging words, and how your children have got on with it. Really hope the light switches get pushed to on very quickly for him. Would much rather have a typical teenager in the house than a poorly one.

Thanks again, oh and of to chemist this morning to collect supplies x
03-06-2013, 06:09 AM   #15
Dexky
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Is he on iron supplements? You mentioned low iron and it can be such an energy drain. Good luck with the remi!!
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EJ dx w/ Crohn's 12/09
PSC 3/10

No more 6mp
Currently in the Humira Club
03-06-2013, 07:44 AM   #16
Bubbly
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No, not on iron supplements at the moment, they dont like to give them unless he gets bad, as upsets tummy to much. We have managed so far on an iron rich diet, however this has always maintained his level until this week when a little split in the corner or his mouth has appeared, normally a sign of low iron, so will look at more iron rich foods for him, fingers crossed i find some more he likes!
03-07-2013, 12:28 PM   #17
positivemum
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Good luck with the infusion. My son is 14 and may have to go down that route yet. Please do let us know how you got on. HE also has iron problems and has had infusion of ironsucrose for it. He hates canulas so this is traumatic. He still isn't right and misses school. He starts his exams years in Sept so I am desperate for any more help. Currently azathioprine and Pentasa
03-07-2013, 01:20 PM   #18
Jmrogers4
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Welcome Positivemum, sorry your son is having such trouble. I know for many infliximab/remicade has been a miracle drug and helped their children reach clinical remission and were back to feeling the way they did before crohns and growing and developing normally.
Azathioprine wasn't quite enough to get my son into full remission. He is currently on LDN, supplemental EN and doing well.
03-07-2013, 02:24 PM   #19
Bottomless mummy
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I just have one thing to add which i don't think has been mentioned please make sure you tell them of your sons sore on his mouth ! I some cases they won't be able to do the infusion. I nearly lost mine because I lost a toe nail. Any sort of open cut wound or sore has to be known about.....and if it happens again down the tract while on infiximab he may need antibiotics. Just a word of thought regards
03-08-2013, 04:02 AM   #20
Bubbly
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Thankyou, i will make sure i tell them, i am currently writing down a list of things i want to ask/tell them and i keep it with all his info i take to hospital every time. If any of us have a question or unsure of something, i always say, write it down in the book! The only way to remember, otherwise they can talk so quick the doctors/nurses you are trying to process what they have told you and you forget what you wanted to ask (well it does to me!). So added to my ever growing list, and thankyou for mentioning it.

He doesnt seem to bad at the moment, still no school, movicol has worked at last, he was complaining of for ever being on the toilet!! Just want Monday to get here and get on with things, being impatient as usual!!
03-09-2013, 09:45 PM   #21
vtfamily
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Best wishes to you with the Remicade. It was the first thing that truly worked for my son. I understand how difficult the decision is to make on behalf of your child.

The infusion is a long process. Take plenty of things to keep him interested (books, computer, etc...).
03-09-2013, 11:12 PM   #22
CarolinAlaska
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March 11 is coming soon! Are you ready?
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J's story: http://apathnotchosen.blogspot.com
*J, 18, Crohn's diagnosis 1-2013 (age13), taking pred only. 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.
03-09-2013, 11:48 PM   #23
my little penguin
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Good luck on Monday
The first infusion is the hardest on the parent
03-10-2013, 01:19 PM   #24
Bubbly
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Thankyou all.

Not sure if we are ready, nervous at the moment, apprehensive, fear of the unknown!!

Son is fairly calm, kept him occupied, its been mothers day here in the uk, so the in-laws have been round for sunday lunch and only just left, he is currently on the x-box gaming with friends, nice bath later then bed, fingers crossed he sleeps, been unsettled the last few nights.

He has an i-pad that he has downloaded some films onto, and a book to read to try and help pass the time, i have some magazines and puzzle books, trying to help the time go also!! Think it will be not sleeping well tonight!!

Hubby unable to come, he really wanted to come to the first one, but his boss is away and there is only him, very small company!! So i have promised that if anything goes wrong i will ring him and he will shut up shop and hurry to hospital, approx 30 mins away, so not to bad. I just have to be brave, slight concern is that i have been having problems with fainting!!! Low blood pressure, so i try and control my breathing and have some water, and sit down, fingers crossed it doesnt happen tomorrow!!

Will let you know how things go tomorrow xx
03-10-2013, 02:11 PM   #25
CarolinAlaska
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Bubbly, make sure you are well hydrated before going tomorrow. I'll be thinking of you both. I pray this night you will both get good sleep and that the infusion will go well. <<<Hugs>>>
03-10-2013, 02:14 PM   #26
my little penguin
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Hugs the first one is the hardest but the time really flies while there.
DS only got to watch one movie
Since you are doing things the rest of the time vitals ,
Iv etc...
03-10-2013, 02:44 PM   #27
vtfamily
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One more thing...our center wanted me to give my son a tylenol and a benedryl about an hour before his infusion time. We live two hours from our center, so I would have it ready in the car and give them to him at about the half way point.

Hope that helps.

Try to relax. It's going to be fine.
03-10-2013, 02:57 PM   #28
my little penguin
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Our center give Benadryl /Tylenol at the center - 1/2 hour before.
We are not permitted to give it at home prior.
So just check on that .
03-10-2013, 03:13 PM   #29
SarahD
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Best of luck tomorrow!
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Symptoms from the age of 12. Mis-diagnosed with UC at the age of 13, and later diagnosed with Crohn's in January 2012 at 24 years old. Disease mainly in terminal ileum.


Current meds:
Azathioprine, Allopurinol, Calcichew D3-Forte, Fortijuice, Alendronic acid, Ranitidine

Previous meds:
Augmentin, Doxycycline, Lansoprazole, Asacol, Pentasa, Prednisolone, Entocort, Cipro, Flagyl, Elemental Extra 028
03-10-2013, 03:29 PM   #30
Sascot
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Good luck!!
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