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Children's health

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Original poster

DD (6) refusing to take methotrexate...really need help with some new tactics.

15 replies

waterbabyabroad · 07/02/2014 21:03

DD was diagnosed with juvenile arthritis last May and has been on methotrexate tablets since Sept. Initially she was fine taking them crushed with yogurt but recently started gagging on them so we persuaded her to take them whole. Again she was fine but now she has a total mental block about the medication because of the side effects she is experiencing (metallic taste, slight upset tummy). We don't want to switch to the liquid form as i think she will be worse on that.

If anyone has any thoughts, please can you share them as we've now firmly run out of ideas.

OP posts:

NoIamAngelaHernandez · 07/02/2014 21:07

I feel her pain ( as I am sure you do too). . I took methotrexate for about a month and felt so unwell I truly thought I was dying.
Are you sure she has told you about all the side effects she is experiencing? I felt so exhausted, depressed and hopeless. Hard to articulate for a 6 year old but maybe she is feeling worse than she is letting on.

NK5BM3 · 07/02/2014 21:15

Hello
My son has/had systemic jia. He's nearly 6.0 but was diagnosed just after he turned 4. Wrt methotrexate, I'm assuming she's also doing folic acid the next day? Is she ok to take that too? Is that in liquid or tab?

Re the tablet, we crushed it into his food. The pharmacist wasn't keen for us to do that (although we did it before we told him!) but that was the only way we could do it without trauma (and we had a year of that... He was first on liquid then gagged after a few weeks. Then we mixed it in yoghurt and he started hating yoghurt - still doesn't eat yoghurt. Then honey, then just plain force feeding, screaming crying.....

So he had methotrexate in his pancakes (make up the mix, when you put it in the frying pan, just put the crushed tab in that particular pancake. Cook it. Then serve it to her, with butter, honey etc). It's totally fine. He also had methotrexate French toast. Bolognese...

But we told him that he was still having his med, just 'in his sleep'. He was v pleased with that as he thought he could still take his med but not taste it.

He's thankfully in remission since October (touch wood). We return to gosh in April.

Good luck. Happy to chat more re this!

Original poster

waterbabyabroad · 07/02/2014 22:03

Thanks both for your replies. I've got a pretty good idea about her side effects but she isn't able to tell me the full story I'm sure. She seems very worried now about choking on the tablets but won't take them crushed. We may try the pancake idea tomorrow NK5BM3, thanks for that. DD also hates yogurt now after years of it being one of her favourie things. That's great news about your DS. I hope the remission is permanent. We were also due at gosh in April but have had to rearrange. Has your experience there been a good one?

OP posts:

May09Bump · 07/02/2014 22:12

My son has been on neocate formula for yrs - it tastes horribly metallic. We made banana milk shake with it - the only way to hide it for us. Also, helped getting him to add the ingredients together - took his mind off it and felt big helping.

Maybe it would work with your crushed meds. Maybe call a gosh nurse to check it's ok to do.

NK5BM3 · 08/02/2014 07:52

Our experience at gosh has always been good. They reacted very quickly when they first got the referral from our local paed. And they offered us an appointment on the Monday after the Friday evening phone call with us. We stayed in for 2 weeks whilst they did all the tests including a bone marrow aspiration to eliminate the cancer diagnosis.

Started with pred, then moved on to methotrexate and it's been great. So he was without symptoms for a year which was October. They decided to share care with our local hospital paed unit and it's been good. We were due to see the consultant in feb but they rescheduled to April.

Good luck. Let me know how the pancakes go.

Original poster

waterbabyabroad · 08/02/2014 16:22

We're dong shared care with our local hospital and GOSH as well but holding on to GOSH as long as we can as the local hospital doesn't really have the resources or expertise in this area. Thanks for the food tip. I hid it in her porridge this morning and she ate the whole bowl, though was incredibly suspicious when I gave it to her and demanded to know if there was hidden medication in it. We've tried all sorts of bribes to get her to swallow it whole and she just won't bite.

OP posts:

Iamaslummymummy · 08/02/2014 16:46

My ds has melatonin to take and the only way that we can get it into him is crushed completely fine into actimel drinks

mercibucket · 08/02/2014 17:00

why would the liquid form be worse?
it sucks having to make kids take meds
we just insisted and told ds he would be very ill if he didn't (different meds but also vile) feel a bit of a cow reading all your posts

NK5BM3 · 08/02/2014 17:44

Glad she had the porridge!! :) I would suggest that you do tell her that she is taking the med but that you are giving it to her whilst she sleeps or something.... So she'll stop being suspicious but is assured that she is getting better because she's somehow getting the med.

Have the consultants said anything about prognosis? Which arthritis does she have? Ours came out of the blue after he had chicken pox. He collapsed a month after the pox, and the drs kept saying it was a post viral thing. Yeah, except he was aching and crying every evening from about 4/5pm and he'd be sleeping from then. and he would sweat buckets and have a really awful rash all over. And then start over again in the morning all ok... And the cycle continues.

Is tomorrow morning the folic acid?

Original poster

waterbabyabroad · 09/02/2014 16:49

Actimel drinks sounds like another good option, thanks for that. Mercibucket - i've been told the liquid form of methotrexate is very oily and she has a bad enough reaction taking things like antibiotics because of the taste. I'll have to think of a story about how we are giving it to her now, I know. She says she wants to try the injection so we'll ask if we can give that a go as well. She's absolutely fine taking the folic acid but we've been prescribed 2ml / day rather than once a week.

No discussion of prognosis yet. We've been told that she'll need to be on the meds for at least 18 months. She started with a diagnosis of oligoarticular arthritis but that's now changed to polyarticular as it's spread to 5 joints. DD had both chicken pox and tonsillitis in the last couple of years but it didn't start immediately after either of those. I'm still feeling a bit guilty that it may be a reaction to some vaccinations she had 2 summers ago. The other thing that worries me a bit is how thin she is. She eats quite well but is all bones really.

OP posts:

JoulesM · 09/02/2014 21:41

Sounds ridiculous but lots of kids get fewer side effects from Mtx if they have it subcutaneously. The CNS either locally or at GOSH can often teach you how to do it yourself and lots of young people actually are happy having the needle if it stops them feeling sick. A good dose of anti-nausea medication before Mtx can also be a godsend. Please don't just struggle away with it-talk to your local team or one of the clinical nurse specialists at GOSH. They will have lots of good advice-it's such a common problem with methotrexate! They know loads and will be able to tell you what you can/can't do. Not sure about whether you can cook it up or put into a drink as such as then they might not have the full drink/food and not get the full dose,iyswim. Good luck and don't underestimate how pants Mtx can make kids feel!

TabithaMcKitten · 10/02/2014 21:19

My son has oral methotrexate as part of his ongoing treatment for leukaemia. He has the liquid version (he has just turned 5) and he really struggles to take it because the taste makes him gag. We have several tricks up our sleeves for helping him take it (it is a once weekly dose) - one of them will usually work!

Have a big drink of orange juice on standby. He has a spoonful of strawberry jam, methotrexate and then another spoonful of jam followed by a big drink.

Bribe him with something - usually bloody lego!

Wake him up in the middle of the night to take it - he still gags a bit, but is more compliant taking it.

He has a good understanding of his illness and why he needs to continue to take medicine even though the leukaemia is gone. We ask him questions about it to remind him of why he has to take it - things like what does the medicine do? (goes all around the body to look for any leukaemia cells that might be hiding), what happens if you don't take it? (the bone marrow might start making the broken blood cells again), what happens if that happens? etc etc.

It is really hard though. I hope you can find a way that works for you x

Original poster

waterbabyabroad · 10/02/2014 22:20

Thanks Joules and Tabitha. I've put a call into the hospital today so will hopefully hear back from someone tomorrow.

Tabitha - the reason I'm so concerned this time is that the ultimate bribe didn't even work this weekend. She's desperate to visit Harry Potter Studios and i was going to book tickets then and there if she took the medicine (was planning this as part of her birthday) and she refused. She's really clear she needs it but seems petrified now to put it anywhere near her mouth. I think I'll request the injection and see if she can cope with that. Thanks for the support and ideas all!

OP posts:

pancakesfortea · 10/02/2014 22:24

No advice I'm afraid but I take methotrexate for psoriatic arthritis and it's horrible (but very effective). My heart goes out to your daughter.

ykmr · 11/03/2019 13:40

Hello,
I’m one of the parent trying to get mtx work for my kid with difficulty. Know this thread is old but hope someone can give a reply. DS 4.5 years old has trouble taking it. We tried mixing it in vitamin syrup but he still gets the taste of it. Question is if we mix MTX with pancake syrups, orange juice or banana milk shake as said above will the effectiveness of MTX still be there? Also can they still feel the taste of it? I’m trying to go with milk shake this week after couple of failed attempts to get him drink with syrup and water.But his has to be taken to keep his inflammation in control. Thank you for your time. Hope and would want all people taking this to have success and remission. Know how difficult this is.

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