Fixing to start Remicade--any helpful tips?

[coolbeans]

Hello all,
My 12 yo daughter is set to begin Remicade infusions tomorrow. I need some advice/reassurance please. Is there anything you would recommend taking with us? It is about 2 hours away from our home & they told us we would be there about 4 hours this time. She is very anxious about it & I just want to prepare her the best I can. I asked the nurse about giving her something for the anxiety but they wouldn't. UGH!!!!!!!! We both need it--haha!! She is supposed to be going to a place that is set up just for kids so hopefully that will make a difference. Any advice is much appreciated. Thank you all so much--I have learned a lot reading your stories.

 

[pdx]

Do you know if they have numbing cream to use before they place the IV? If not, you can buy 4% lidocaine cream over the counter to bring with you. It has to be in place for an hour (longer is OK too) to really work well, so you might even want to put some on about half an hour before you arrive. We put a thin layer on first, and rub it in well. Then we slather on a thicker layer, and cover it with a piece of saran wrap. Finally, we wrap it all loosely with Coban (any kind of cloth bandage would work) to hold the saran wrap in place. If you do it yourself, be generous in your coverage area, to make sure you cover any possible IV placement spot.

They might also have something called a J-tip that they can use to apply lidocaine to her arm right before the IV. J-tips are a needleless injection system that uses a short blast of pressure to inject medicines. It's a little loud but painless, and it doesn't have to be done ahead of time.

Try to keep her busy during the infusion itself. If you're going to a children's infusion center, I'm sure they'll have lots of distractions. We always make sure to have a new movie or TV show loaded onto our iPad, along with foods that she likes.

Good luck tomorrow--I hope it goes well and easily, and that Remicade works well for her.

 

[Ladybug12]

Always make sure she is well hydrated. It makes it easier to get the iv started and getting blood for labs.

 

[Jmrogers4]

We always bring a blanket as it's almost always cold in the room also it's just a comfort. They don't always but warming up the arms with heating pads helps with IV.
We bring snacks also (they have them but not always what he likes).

 

[Maya142]

I agree about making sure she is hydrated - that will help. The numbing cream is a good idea too. Heat packs can also help with making the veins pop out more. My daughter is a hard stick, so the nurse will often given her two hot packs to put on two different spots to make her veins easier to see.

The actual infusion is pretty boring. It's just long. I would take some sort of entertainment for her. At our infusion center, they have small TVs for the kids. They also provide blankets and basic snacks (juice, saltines, graham crackers). My daughters usually took a book or an ipad for something to do. They also napped. They both actually liked the infusions - it was a chance to relax and miss school and watch lots of TV!

Good luck! The first one is definitely the hardest.

 

[Mehita]

Ask for the j-tip! My son uses it every time and it takes a ton of the anxiety out for him. I do believe it has to be ordered by the doctor though ahead of time.

Have her drink a ton of water the night before. Makes the veins pop.

If you're in a pediatric clinic, I'd recommend headphones or ear buds or something to drown out noise. My PBS Kids and Sesame Street days are long gone so to have to listen to that on full volume from our neighboring patient's TV wears on my nerves.

Oh, and chargers for your phones and other devices.

The nurses will check on her a lot for the first couple infusions. Just relax and enjoy your time together.

 

[coolbeans]

Well the first infusion is in the books. She did really well--mainly tired from the Benadryl. I think they slipped me some too b/c my tail was dragging. haha!! Also her GI dr came in & advised we are to stop all meds (Pentasa & Imuran) right now. I am glad that she is no longer chained to meds by mouth but kinda worried about stopping all at once before we see if the Remicade is going to work. Anyone else have any experience with this? Am I just worrying for no reason? (which happens quite frequently-ha!!) We go back in 2 weeks for the next infusion-woot woot.

 

[Maya142]

Typically doctors will wait to stop other meds - Remicade can take a while to work. For some kids, it works after one infusion, for others it takes months. My daughter took 3-4 infusions before she felt significantly better. Some kids on here have taken 6 months to respond.

Also, many doctors now like to keep kids on immunomodulators like Imuran or Methotrexate, to prevent them from building up antibodies to Remicade. Most GIs seem to be moving away from using Imuran (because of the slightly higher risks) and are using Methotrexate instead.

Stopping Pentasa probably isn't a big deal - it's so mild anyway.

Glad the infusion went well! The next one will be a breeze!

 

[pdx]

So glad to hear that it went well! And yes, I would be a little concerned about stopping everything else. How are your daughter's symptoms right now? I would check with your doctor to see what the plan is if she doesn't respond to Remicade right away.

 

[coolbeans]

She seems to be doing ok so far. She hasn't had any symptoms for about 2 weeks--which is when the last dose of Pred ended. The nurse told me her blood work from yesterday was normal--the c reactive was 2.9. I have some ?? about her next appointment so I may just call Monday & question them about stopping the meds before the Remicade has time to kick in. She cant afford to lose any more weight--she only weighs 59 lbs. Thanks for your help.

 

[Maya142]

Is your kiddo getting any supplemental nutrition (enteral nutrition)? Many kids either drink formula or get it through a tube.

Boost and Pediasure/Ensure are the best tasting shakes. They're also the least broken down so she may or may not tolerate them but it's worth trying. If those don't work, then you would typically try a semi-elemental shake (more broken down) such as Pediasure Peptide or Peptamen Jr. Some kids are able to drink them, other kids prefer the NG tube feeds.

My daughter has done both - and she definitely preferred the tube. It was much less intimidating than we thought it would be. She was severely underweight when we started tube feeds but gained 25 lbs and is doing great now! She feels so much better now that she is now malnourished and she has so much more energy.

She now says her tube is the best and she's never going back to drinking shakes.

Exclusive enteral nutrition is another option. That would be formula only for 6-8 weeks. It would induce remission while you are waiting for Remicade to work. Many kids do this to avoid steroids - it works just as well as steroids for inducing remission and actually works better for mucosal healing.

 

[coolbeans]

so do most of the kids on Remicade also do supplemental nutrition? Our dr gave us some Ensure samples on our first visit to him but has said nothing since.....
We tried the Pediasure last night & she drank about 2 sips & refused anymore. Ugh!!

 

[my little penguin]

We did supplements
But
We tested it like meds
It had to go in
Either orally or tube
We also started with worst tasting ones
Elemental and then offered better tasting ones
Similar to starting baby foodveggies before fruits


Good luck
There are a lot of flavors
And no one likes them but
...
It helps them grow normally

 

[pdx]

so do most of the kids on Remicade also do supplemental nutrition? Our dr gave us some Ensure samples on our first visit to him but has said nothing since.....
We tried the Pediasure last night & she drank about 2 sips & refused anymore. Ugh!!

I wouldn't say that most kids on Remicade do supplemental nutrition, just those who are behind in growth or having trouble getting enough calories through food alone. And EEN (formula only) is used as a short-term treatment for inflammation, while you wait for maintenance meds (such as Remicade) to kick in.

My daughter has done both--supplemental and EEN--and both worked really well for her, but she needed a tube for both. She never has been willing or able to just drink formula.

 

[my little penguin]

Pdx
More GI are recommending supplemental nutrition for two reasons
O e studies are showing that when supplemental formula is given with remicade the amount of time that the biologics are still effective is longer
Two kids with Crohns need more calories than the average kid and often have trouble absorbing nutrients (such as iron etc..) this makes up for those differences
So kids who started out above average height /weight etc can get back to their curve and don't have be just on the growth charts
Prior to biologics and formula Crohns kids were very tiny (on the growth chart but tiny )
Most assumed this was a given with the disease

This is not the case anymore
Especially true with boys since teenage boys can need up to 3000 calories a day without Crohns disease

The other nice thing is even if disease is active the formula allows them to continue to grow and gain despite the inflammatory processes going on

For ds he dropped from the 75% of height at dx to below the 25%

By adding formula and biologics he is close to the 70% again for height

 

[my little penguin]

Objectives:

Many patients with Crohn’s disease on infliximab maintenance therapy have recurrent symptoms despite an initial clinical response. Therefore, concomitant therapies have been studied. We conducted a meta-analysis to assess the effect of specialized enteral nutrition therapy with infliximab versus infliximab monotherapy in patients with Crohn’s disease.

Methods:

A comprehensive search of multiple databases was performed. All studies of adult patients with Crohn’s disease comparing specialized enteral nutrition therapy (elemental or polymeric diet with low-fat or regular diet) with infliximab versus infliximab monotherapy without dietary restrictions were included. Meta-analysis was performed using the Mantel–Haenszel (fixed effect) model with odds ratio (OR) to assess for clinical remission.

Results:

Four studies (n = 342) met inclusion criteria. Specialized enteral nutrition therapy with infliximab resulted in 109 of 157 (69.4%) patients reaching clinical remission compared with 84 of 185 (45.4%) with infliximab monotherapy [OR 2.73; 95% confidence interval (CI): 1.73–4.31, p < 0.01]. Similarly, 79 of 106 (74.5%) patients receiving enteral nutrition therapy and infliximab remained in clinical remission after one year compared with 62 of 126 (49.2%) patients receiving infliximab monotherapy (OR 2.93; 95% CI: 1.66–5.17, p < 0.01). No publication bias or heterogeneity was noted for either outcome.

Conclusions:

The use of specialized enteral nutrition therapy in combination with infliximab appears to be more effective at inducing and maintaining clinical remission among patients with Crohn’s disease than infliximab monotherapy.

Keywords: Crohn’s disease, enteral nutrition, infliximab, meta-analysis
Go to:
Introduction

From
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4480570/



Specialized enteral nutrition therapy in Crohn’s disease patients on maintenance infliximab therapy: a meta-analysis
Douglas L. Nguyen, Lena B. Palmer, Emily T. Nguyen, Stephen A. McClave, Robert G. Martindale, and Matthew L. Bechtoldcorresponding author

 

[pdx]

Thanks, MLP. Good food for thought for me...

 

[Faithsg]

Ask for the JTip for the IV. I always bring a drink, snacks, his own soft blankets as he gets cold and then sleeps. I also bring an ipad and he has a cell phone. I bring for myself coffee, a ipad to watch TV and snacks, I feel like watching shows eases my worry but sometimes I read too.. The hospital has movies and food but I want my son to be comfortable. Our hospital is an hour and we leave at 5:45 am. I sometimes bring small games like a rubix cube or suduko for him he likes that stuff, if I had a girl I may be inclined to polish her nails if she liked that sort of thing. My son sleeps for the most part he is given Benedryl. Good luck I will be thinking of you.

 

[Faithsg]

As for supplemental nutrition my son won't take any of that. I give him lots of vitamins and smoothies. After starting remicade he has grown and gained weight.

 

[CrohnsKidMom]

My son is on Remicade with MTX, and we don't use supplemental nutrition. But, we have fruit smoothies every day, and I sneak an ensure in the smoothie a couple times a week. Thats also how I usually give him his daily dose of Miralax, Vit D, etc.

And as far as infusion tips, I also highly recommend your child drinking lots of water 24-48 hours before infusion. And bringing some little comforts of home...a stuffed animal, or in my son's case his chargers and power banks to keep the electronics going...

 

[coolbeans]

Thanks all. We looked like we were moving in last week--haha!! We had our laptop, all her electronic devices, a blanket, snacks, 3 stuffed animals, etc and all my electronic devices which I didn't touch ....the only thing we used was the laptop to watch movies. Ha!! We couldn't doze b/c every time my hubby would almost be asleep, the machine would beep & the nurse would come in.