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 thèy 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.

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!

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

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

I'm so sorry to hear your heartbreak.
Hugs to both of you.:ghug:

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.

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!

I'm so sorry..will pray the new mix of meds start to work immediately! Lots of hugs to you and yours. xoxoxoxox

Oh my goodness Stephyjane, my heart goes out to you and Ella...:hug:

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. :ghug:

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. :heart:

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

Thinking of you,
Dusty. xxx

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!

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

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!

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!!! :ghug:


(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)

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.

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!!

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

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!

Glad the infusion went well, I hope it works really quick!

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

Stephyjane said:

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

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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

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

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

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!

Sascot..Safe this time, huh? ."Luckily they were looking for someone else..." :shifty-t: :shifty-t:

:thumleft: 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.

Hey Steph, just thinking of you and Ella, hope you guys are on the mend....xxxxxx

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

:hug:I hope things start improving

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

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

So glad you guys are going home! Hopefully things will only continue to improve! Keeping our fingers crossed for Ella.

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

So glad Ella is getting to be at home! She'll be so much more comfortable!


Good Luck to Lewis on his treatment! :biggrin:

Hello again, it's so lovely to be home.
One question for parents that have a child on infliximab. Ella has had excruciating pain in her leg this afternoon from her knee to her foot. So bad she cannot bear to walk on it. There is no obvious redness of swelling and paracetamol hasn't helped. Does anyone have any advice, when I spoke to the Ibd nurse she was no help.
Lewis's mum- if you read this, how did the first infusion go? Xxx

Aw steph so sorry she has had pain, did she have any other probs whilst having it I'm sure a mum will be on soon to help you lewis has codiene at home for when he has serios pain . I've asked them for it cause we been at the hosp so much with pain ..if I think we need to go hospital I give it him and it stops us just being giving it him in there . I had to ring the ward to check in they said they didn't have a bed at that time ring back at dinner they said it was unlikely that there would be a bed today they would ring at 2 to rearrange well I'm still waiting for them to ring even though I rang twice . I'm hoping they sort it tomorrow lewis was so ready to go today . I've ranted at the play specialist when she rang as she went specialy there to see lewis she had the buzzy shots ready for him .hopefully he.ll have it tomorrow. Hope ella feels better soon she been through so much bless her . On a positive your at home and comfy of a fashion .xx

Does she have the infusions done at an IV lab or a lab at the hospital? C has his at an his GI's IV lab and the Remicade nurse has always made a point to tell me to contact her if he has any type of reaction or pain after the infusion. We have only took her up on this once, as C had a blister come up on his lip 45 minutes after infusion. She directed us to take benedryl but if anything else came up go to ER and give them all the info, then call her and she would contact GI. Maybe you could contact the nurse at the place she recieved the infusion, although I know things might worked differently in UK. I hope her pain subsides soon.

I hope Lewis gets his appt soon, waiting is so awful, it's bad enough that they have to get this treatment without prolonging it all for them.
Ella had her infusion whilst she was already in hospital, I believe she is the first child to have the first dose of Infliximab there as most patients are already on it and they carry it on. We have an appt tomorrow so if she is the same I'll hopefully get them to check her over ( Ella sees a psychologist tomorrow)
It's like one step forward and 20 back at the moment. I so want to keep her at home and avoid going into the hospital again.

We saw a dr today who checked over Ella's leg. Said it may be a side effect of the Infliximab or because of long use of steroids of Crohns related arthritis. He said if its the infliximab they will have to decide whether she can have it again. It's all so confusing. What comes after infliximab, we were told Ella was having the maximum treatment.
Anyway I'm running away with myself. I hope everybody is well.

Hi steph how's ellas leg doing . Try not to worry things will hopefully settle down for her and hopefully she.ll be able to continue if her pain subsides. If you can't then there's other things they will be able to sort out for her to get you lovely little girl back to normal , were in manchester childrens hosp at the min w came in last nit to save a bed so had to sleep . What a bloody nuscience but were here they gona do the infliximab after they've done a test for neurofil or summat like that its testing for grannulomas so once that's done we.ll be on the road to going home one the infliximab is in him I.lll check back latr see how u getting on hun . Take care big hugs to you both .xx

Hi, I hope Lewis infusion goes really well today
You must be relieved you're finally getting it done!
Ella's leg is really painful and she can't walk on it. Her tummy though is really settled and she's only going to the bathroom about 3 times aday for a bm. Which is fantastic.
We see Ella's consultant tomorrow and we'll see what he says. She is supposed to have her next infliximab next week so not sure what will happen about that.
Let me know how Lewis gets on today,I'll be thinking of you. X

Thanks hun I hope her pain settles what is she taking for it I have codeine and paracetamol at home for lewis when he has mega pain maybe ask your doc if she can have some codeien only for mega pain episodes. Lewis has forund a friend who is 15 and there playing on fifa so he's quite content today I thought hed be climbling the walls the IV team have just come to put his magic cream on so I'm hoping hell be o.k when they put the cannula in . Hope ella gets some rest today and she's enjoying being at home. I.ll let you no later how he gets on hun.xxx

Lewis had his treatment all went well so fingers crossed . How's ella doing is she still in lots of pain with her legs .x

I was wondering how he had got on. I'm so glad it went well. Was he tired after?
Ella's leg is still really bad and seeing her consultant today. I've decided I'm not leaving his office until something is done about it.
Im hoping its not the infliximab as it has worked wonders on her tummy and bowel.
Is Lewis having another one in2 weeks? What other meds is he on?
I'll be glad when Ella is of some of hers, she had 23 doses of medicine yesterday!!
Let me know how Lewis is today xx

Aw bless her, she's been through so much it will be so sad if she has probs with her legs aswell as her tummy. U be strong steph and tell them you need some answers I kicked of with lewis consultant in july I was that mad I was crying as I'd just had enough after that I tink he was a bit scared of me lol. Lew is tired and feels sick but for the first time in nearly 4 years he hasn't woken in the nite moaning and crying and he's not had pain this morning or wretched fingers crossed . They haven't put him on anything else YET! Docs wana see how he responds he's never taken anything else apart from buscopan and codiene as lew.s probs are mainly fistulas and abscess.s . Lew goes back on the 30th oct and there struggling finding a space for the 3rd dose I'm gona conatct my hospital nearer home and se if they can see him there. Let me no how u get on at the docs later hunny, hope you get some answers will they run bloods of her today and check her levels . We havnt seen the ibd nurses yet have u seen yours yet .x

Bless him. How can they start a treatment then say they can't fit him in for his 3 rd dose?
That's unbelievable, I think they forget sometimes that they are dealing with people's emotions. I may have my own little breakdown today if they try and say her leg pain is unrelated.
Fingers tightly crossed for Lewis that this works for him.
Ella says hi xxx

Tell ella I said you go get um girl, and she.ll feel better in no time she has to be positive .xx I no how mads that I no they rushed him in for his first treatment but they.ll have to sort summat for his 3 rd that's how it works u can't plan months in advance to go on infliximab its a needs must treatment I think my doc said that he may put him on aziothon or close to that wording lol if he starts with any abcss.s whilst he's on it . Lewis bloods for granulomas keep coming back inconclusive so I'm just keeping positive that its just a glitche and he hasn't got the granulomas bacteria aswell ! One day at a time my hubby says haha . Well I'm having a lie in till 8.15 lew.s chilling watchinng t.v I done sandwich.s for my daughter ellies dinner and I'm having a relax caue mornings are usually about lewis being sick or in pain . Hope u and ella get some answers today why don't u wright all questions down and then assault the doctor with words lol.x

..

ood Morning, So sorry Ella is having pains it's very frightening when they get pains as you have no idea what has caused it. my son had severe low back pain when he was on infliximab and they thought it may be crohns related arthritis , at the time i was horrified at what this nasty disease throws at the kids, this pain tended to happen as the infliximab was wearing off though, just before his next infusion.He had a lot of leg and foot pains when he was in hospital which frightened me as i panicked and thought he had a blood clot..he didn't.!.. still don't know why it happened! Legs are fine now! much longer though!
but I agree with you don't leave that office without an answer today.. insist on a referral to the specialist consultant soon..BEFORE your next scheduled appointment in oxford, you are entitled to be referred, don't be fobbed off with they,re not sure!...this drug can't be taken lightly and needs each and every symptom investigated.
At first I felt that perhaps i shouldn't make a fuss about every symptom he had then i quickly realised you must be their advocate and shout and insist on investigation by SPECIALIST CROHNS aware consultant gastroenterologist especially early on! especially one with infliximab drug experience
Do they not have a walk in clinic in Oxford so you can just go? they do in some childrens gastro centres although it is on a specific day.
I would ring oxford direct if Northampton won't refer it ,and if you can't get the answers you're looking for.
Tell them how it is and how worried you are,sometimes they do not appreciate the devastating efffect this diagnosis has on a whole family.
Don't be fobbed off! insist on being moved to the specialist centre if the NGH don't inspire you..the journey is inconvenient but worth it for their expertise..
Good Luck for today x