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Crohn's Disease Forum » Parents of Kids with IBD » Infliximab tomorrow!!


 
10-11-2012, 03:38 PM   #1
Stephyjane
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Infliximab tomorrow!!

I thought I'd start a new thread as tomorrow is a start of a new treatment for Ella. After deciding to put Ella on TPN the big doc in Oxford has said no way.
She is to start infliximab tomorrow, I've lost count of how many pills thy have her on at the moment and have said if she doesn't start drinking the Fortisips they have choice but to put a tube in, which after her last experience is the last thing she wants.
How can things get so bad so fast? They won't tell me how long we'll be in hospital, just that it won't be months!!
My heart has broken today.
10-11-2012, 04:30 PM   #2
Clash
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If she is going on Remicade I truly hopes it works really quickly for her. It did for my son, he did so well during loading doses but now we are having to tweak the schedule and possibly add more meds. I know you must be heartbroken and I hope she is able to avoid the tube if she is upset by it. Just wanted to send my support and hugs your way!
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C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
10-11-2012, 04:46 PM   #3
Sascot
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So sorry to hear she is struggling and of course you are struggling to deal with it all. I really hope the infliximab works wonders, there are quite a few kids who have done really well on it. I know the NG tube isn't much fun - Andrew was quite upset when they put it in. If it helps - it took 2 to 3 days for it to settle down and after that he hardly knew the tube was there
10-11-2012, 04:47 PM   #4
Stephyjane
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Thanks Clash. Ella is going to be kept on the Aza and another one which I can't remember the name of, but I think is the same family of meslamine??
It'll be a while until she's off the pred as she's on 40mg when she switches to oral tomorrow.
I'm praying if she has a good result with this we'll be able to go home inbetween the loading doses. Did you find the first dose worked quickly? I really have no idea what the next step is if this fails.
Thank you so much for your support xx
10-11-2012, 04:52 PM   #5
Farmwife
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I'm so sorry to hear your heartbreak.
Hugs to both of you.

It's amazing how quickly they can go down.
My 3 yr. old can drop pounds a DAY. I wish I could do that.
Just remember your doing the best you can and from what I read your a great mother.
Hang in there.
Things WILL settle. Life will get back to normal.
It's just hard to see it through the clouds.
Many of these parents now can say they finally see the sun and you will too.

I hope the new meds work.
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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
10-11-2012, 04:56 PM   #6
Clash
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C was on 40mg of pred orally and had been for a few weeks when we started the remicade. The pred had brought no relief of symptoms but the remicade was almost immediate. Within a few days the pain, cramping, fevers, inabililty to eat and joint pain were gone. I was astounded, the symptoms left were the side effects of pred and we started tapering the day of infusion. He was so thrilled to be rid of the cd symptoms but the pred symptoms(the restless ADHD feeling) just about drove him crazy. He said he felt so much better but you could just see it without him saying a word. It was such a relief, I hope it works just as quickly for your baby!
10-11-2012, 05:11 PM   #7
Ams-Qld
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I'm so sorry..will pray the new mix of meds start to work immediately! Lots of hugs to you and yours. xoxoxoxox
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Son with Crohn's, Dx at age 10 - 4 years ago. Anaemia of chronic disease (first iron infusion Dec 2013) Peri-anal abscesses (Aug 2012) that formed fistulae (early 2013). Began 8 weeks of EEN in Dec 2013 via ng tube.
Current Meds: Imuran (25mg) morning and night. Previous Meds: Pred, Flagyl, Cipro. Allopurinol.
Please take my thoughts and experiences as mine alone; I am not a medical professional and my humble opinions are not to be taken as advice! Blessings to you and yours!
10-11-2012, 06:39 PM   #8
DustyKat
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Oh my goodness Stephyjane, my heart goes out to you and Ella...

I well know those feelings of despair and free falling into the unknown. The hope that is built up one day only to be dashed the next. It leaves you muddled, shocked and feeling utterly helpless.

I don't have any experience with Remicade here but I hope it weaves it magic for Ella and she is soon feeling fit and fab! Bless her.

Mum, we are there with you every step of the way!

Thinking of you,
Dusty. xxx
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10-11-2012, 07:05 PM   #9
Mom2oneboy
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Hugs to you and Ella!! I'm sorry she is so sick right now. Hopefully, she will get quick relief with the Remicade. My son had immediate relief from the 1st infusion. He gets his 3rd infusion tomorrow. There is hope and things WILL get better. Hang in there!
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11yr old son
dx Crohn's 2/2012
Currently on VSL #3
Started EN 4/2
Methotrexate 6/6/12
Remicade 09/30/12

Life is not about waiting for the storms to pass...It's about learning to dance in the rain.
10-11-2012, 07:22 PM   #10
my little penguin
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Remicade here.
The first infusion did not fix everything.
Ds has had three so far and things are great not 100% but so much better.
Remicade is our little miracle drug.
When is works it works so.... well
He was also on pred prior to starting as well as MTX.
We started to wean 48 hours after the first infusion so we would know what was a remicade reaction and what was from the pred wean.

Good luck
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10-11-2012, 08:50 PM   #11
crohnsinct
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Just hopping on and your thread name caught my attention. So sorry things are going badly but wanted to give another thumbs up for Remicade. My daughter felt better right away BUT was on prednisone at the same time. Prednisone weaned and still very good but not 100% enter EN for 6 weeks. We (yes we) ended EN in June and she has been great with Remicade only ever since. No amemia, good vit D levels, gaining weight.

Sending lots and lots of positive Remi vibes your way. Poor Ella needs a break!
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Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Methotrexate (12.5mg wkly - oral)
Vit d 2000IU
Multi vitamin plus iron
Calcium
Folic Acid
Previously used - Prednisone, Prevacid, Enteral Nutrition

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohns
Methotrexate (15mg weekly oral)
Enteral Nutrition
Entocort
IBD-AID Diet
Vit d 1000IU
Calcium
Folic Acid
Previously used: Mtx injections
10-11-2012, 08:57 PM   #12
Tesscorm
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So sorry that she, and you, are dealing with so much right now! No experience with remicade but so many have had great, great results!!! Sending lots of wishes that she begins to feel better very soon! Remember, you are on the road to better days!!!


(Just a note if it comes down to the NG tube - ask for a small, infant size!!! My son and some others here use size 6-Fr. A larger tube may have been part of the problem for her last time)
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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
10-12-2012, 10:57 AM   #13
jmckinley
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I hope the remicade treatment is going well today and Ella gets some relief soon! I know you're scared about her taking it, but hopefully it will be her wonder drug.
10-12-2012, 11:40 AM   #14
Tink572
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Hope everything goes well today and that Remicade works out for her.

When I take my son for his Remicade infusions we try to make a fun time of it. We take the laptop, games, any fun project that he might be working on. It's a few hours of just me and him time.

Good luck today!!
10-12-2012, 02:31 PM   #15
Stephyjane
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Thank you for all your support.
Ella had her infusion this afternoon and was fine.
This evening she is still experiencing very painful stomach aches and diarrhoea. How soon will we see results. She is still on antibiotics and pred and all her usual meds. She was very tired afterwards which I put down to the treatment.
Hoping tomorrow will be a better day.
Love Steph xx
10-12-2012, 02:48 PM   #16
crohnsinct
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Yes, they do get tired afterward. My daughter more from the Benedryl than anything else. Timing varies for everyone but I will say O was on prednisone and we started seeing small differences within a day or two.

Still crossing everything here that this is your magic!
10-12-2012, 02:48 PM   #17
Sascot
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Glad the infusion went well, I hope it works really quick!
10-12-2012, 03:02 PM   #18
Stephyjane
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Ella had a piriton injection before she started I forgot about that, so that could account for some of the tiredness, she is also still on her Pred but that has not done anything for her symptoms this time.
Thanks. One plus is we have now got our own room to keep her away from bugs etc. and I have a bed :-) xxx
10-12-2012, 04:21 PM   #19
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Ella had a piriton injection before she started I forgot about that, so that could account for some of the tiredness, she is also still on her Pred but that has not done anything for her symptoms this time.
Thanks. One plus is we have now got our own room to keep her away from bugs etc. and I have a bed :-) xxx
Hi I have been following your story about poor Ella and as a mum of a fairly newly diagnosed son (18 months ago)i know exactly the trauma you are currently going through...It's the worst kind of pain!
My sons consultant said to me it will get better and indeed it has....the key for him, he was desperately ill,29kgs aged 15yrs!!was i think infliximab, but making that decision was the most difficult of my life! It frightened me to death!
He was always incredibly tired for a day after the infusions which he had for 5 months and slept most of the next day.
Unfortunately Josh's disease was so severe and his colon was so bad he needed surgery to take away the scarred useless parts in September last year, but not everyone has to have surgery.... don't be alarmed .
After his surgery the infliximab infusions stopped...and from day 10 after the surgery he has been on the up...literally he has grown from 146cms tall to 180cms and now weighs 58kgs, now in sixth form has a Saturday job ,bags of energy and has an amazing capacity for life! He's back!
Josh had to have the Ng tube which i was so aprehensive about but there really was no other option as the drinks made him sick ...he cried and screamed for me to tell them to take it out for a couple of days then he got used to it and there it stayed from Feb until last December. He went to school with it in and nobody turned a hair!
trust me you do get used to it being part of your life,it definately saved his!
he even admitted he missed it when it was taken out as nobody treated him favourably anymore! We had the pump at home for overnight feeds then he went to school and ate normally.
He did have the added complication of a perforated bowel which was why he was first admitted so we probably stayed longer than you will but we were both in Hospital for 5 weeks,then he had to have weekly bloods drawn at first as he was and still is on azathioprine to keep him in remission. There is light at the end of the tunnel, you will get your lovely girl back on track, just stay with her ...write everything down and learn,you do learn quite quickly...and ask lots of questions .
I,m glad you have a private room and a bed! it's so important in a busy hospital,we moved in and out of private rooms depending on their availability!
Are you in Northampton Hospital or oxford now?
Josh wouldn't eat hospital food so i spent a lot of his sleeping time shopping for food,he had some weird food cravings and still does!!!
remember 'It WILL GET BETTER!' hugs Josh's mum x
10-12-2012, 04:33 PM   #20
Lewis,s mum
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Hi steph , good you've been through the bloody mill haven't u . So glad she's starting the infliximab I really hope its starts working soon for her were going in on tuesday and starting it . Its a really hard decision isn't it but in the long run it will help , I've done so much research on it the risks are rare and the effects massive . Bet your glad you got your own room at least u can have the t.v loud and don't have worry about waking people and shell have her own toilet which is a blessing. Have they sent school to see her yet we have a school teacher that comes to see lew when he's in its nothing like school just fun and a welcome break that breaks the day up. My thought are with you let me no how she gets on . Did she feel unwell temp etc when she had the infliximab .xx
10-12-2012, 10:19 PM   #21
Stephyjane
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Hi everyone, it's 4am and I just had to come on and say Ella hadn't had one bathroom visit through the night, could this be coincedence? She feels awful in the sense of pain when she walks but I have to try and see this a little positive.
We are in Northampton General and go to Oxford again in Jan.
After the infusion Ella did have a slight raise in temp and blood pressure but its fine now, she also felt a bit dizzy and had a slight uncomfortable feeling in her wrist on the arm where her cannula is.
Thank you for all your responses, we just need to work on her eating and then we'll be getting there. Xxxx
10-13-2012, 03:56 AM   #22
Sascot
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That's great she didn't have any bathroom visits at night! Yes, it's a good thing to celebrate every little step. Funny you said 4am - I was woken at 4.15 am by police at the door. Nearly panicked - but luckily they were looking for someone who used to live here. Just thinking we would have been awake at the same time in totally different parts of the country.
Hope today brings more small steps on the way to Ella getting better!
10-13-2012, 11:22 PM   #23
jmckinley
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Sascot..Safe this time, huh? ."Luckily they were looking for someone else..."

Glad the infusion went well! I hope the lack of potty breaks is a sign of good things to come!

Question about the wrist pain....is the cannula near the wrist? Ryan has had wrist pain since his infusion in the same arm. His port was in the elbow joint though.
10-14-2012, 12:07 AM   #24
farmerswifey
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Hey Steph, just thinking of you and Ella, hope you guys are on the mend....xxxxxx
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Crohn's Disease
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EEN 27 Aug 2012
6mp
Allipurinol

Remission 17 Mar 2014

Currently healthy, playing football, obsessed with Lego and Star Wars!

Knowledge is Power
10-15-2012, 04:56 AM   #25
Stephyjane
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Hi Ella's cannula is in the back of her hand so I think after a while the infusion hurt going in.
At the moment Ella is on:infliximab ( had 1st dose)
Azathioprine 100mg
Sulphasalazine? 4x aday
Prednisolone 40mg
Lansaprazole 30mg
Metronizadole 3x aday
Cim....? (Another antibiotic) 2 x aday
Dioralyte 1 litre
Fortisips 400mg
Ella has been absolutely amazing with everything, the Dr says Ella is having the maximum treatment she can have. So I have all my fingers and toes crossed.
I hope everybody is well x
10-15-2012, 05:08 AM   #26
upsetmom
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I hope things start improving
10-15-2012, 05:08 AM   #27
Lewis,s mum
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Hi steph. So glad ella seems to be getting a little better I bet even the slighest bit of her feeling better is such a massive enlightenment for you . I hope she continues to feel better and everyday she starts to move closer to coming home , my hubby aske.s me everyday if I've heard anything about ella, . Lew goes in tomorrow to start his infliximab so fingers crossed all goes well and he stops waking every morning with stomach cramps and wretching and these bloody fistulas heal . Keep us updated hun. Speak soon.xx
10-15-2012, 07:11 AM   #28
Stephyjane
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We are being allowed home, as long as we stay away from crowds and let the know if Ella has any worsening to how she is now.
I wish Lewis all the luck in the world for tomorrow with his Infliximab.
Speak soon xxx
10-15-2012, 07:22 AM   #29
kimmidwife
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So glad you guys are going home! Hopefully things will only continue to improve! Keeping our fingers crossed for Ella.
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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.
10-15-2012, 07:24 AM   #30
Lewis,s mum
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That's fantastic I'm so pleased for you. I bet you both are on cloud 9 .. Let's hope she continues to progress,xxxx andbthanks I'm sure well start to see the benefits to ,xxx happy face for infliximab lol.xx
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