MTX and my 2 year old

I was hoping some of you could help me understand how my son is 'feeling' when taking his MTX.  He was diagnosed with polyarticulate (sp?) JRA at 20 months.  We have been taking motrin 3x/day since his diagnosis and saw a pediatric rhuematologist in February.  He kept us on the motrin but at our last visit he prescribed MTX .4mg once a week.  As my son is only two and can't take pills, we are giving him the injections but orally (does that make sense??!?  We mix the shot with some apple juice and have him drink it down)  He took his first dose Saturday - I did it at night and he slept through and seemed relatively fine yesterday - a little extra cranky and finicky with food but we got through.  I guess my question is I dont know what he is feeling or what this drug is doing to him - I get Motrin - I take it and assume it has the same reaction on him.  As for this and all future drugs, until he is able to speak and tell me how he is feeling - I am lost and it scares me to death.  I was hoping someone could break down how they feel after taking it, etc. (nauseous for 24 hours/48 hours/all week?  tired/sore/etc/etc)   I know that everyone reacts differently to different meds but I just want to try to get my brain around this.  Thank you all so much for your help

Heather

Hi Heather!  Welcome to the Creaky boards, we're glad you're here. [[hug]]

I've had RA since age 5 and am now 49. I applaud you for asking this question, because no one ever really asked me! I just took whatever they told me to and bore the side effects in silence. Luckily I had an iron stomach but I basically had no appetite throughout my childhood, which drove my Mom to distraction.

I take the injections. They are pretty near painless for me, but I think it's best to avoid needles if you can until he understands what it's for. It's tough to get over a needle phobia once it takes hold. Some kids are very stoic about needles and take injections in stride, others don't! I sure didn't, but now that I'm an adult I'm over it.

Each one of us here who has taken or is taking mtx will report widely varied side effects. No one medications affects everyone the same way.

When I took the oral mtx pills, I had to take it with food or it would make me very nauseous. This might be why he's picky (or pickier) with his food afterward. Does he have a companion prescription for folic acid? If so, try giving the folic acid 24 hours before the mtx - it might alleviate the tummy upset if that's the issue. (Some of us take the folic acid 24 hours after the mtx dose, but I don't think it matters as long as you're consistent.) It's important NOT to give the folic acid or a vitamin containing it at the same time as the mtx  - they'll interfere with each other.

Did the peds rheumie order folic acid prescription for him? I would assume it's also available in a liquid form, but I'm not sure! Folic is available over the counter but he'd have to take so much of it to equal a prescription strength, he'd probably balk.

Giving the mtx at bedtime sounds like a good plan. I take mine in the morning but many of us here who are more sensitive to it take it at bedtime. You might try a little solid food along with the apple juice - some crackers or a piece of bread. Again, I took the pills but I can only assume that injesting the injectible liquid orally will have similar side effects to the pills.

He will probably be more sensitive to the sun and to heat than normal. Pile on the sunscreen when he's outside, put a hat on him, etc. You know the drill, Mom.

Fatigue is another side effect some of us have. Hair loss is another, but again the folic acid should help prevent that, and with kids it may not be an issue at all.

Mouth sores - watch for these as it could affect his appetite and mood. He may get actual sores in his mouth or on his tongue, or his tongue might feel sore but not show any visible lesions. Again, folic acid helps alleviate this, and this is a side affect that often gets better over time.

I would hazard a guess that the Motrin will create more stomach issues for him than the mtx will...

I know you're scared! [[hug]] My parents went through this in the 1960s with me, when no one knew what to do except give massive amounts of aspirin. Yikes. Mtx has been around for a very, very VERY long time and is well documented for safety and effectiveness. It has potential to cause issues with the liver, but the good news is they monitor that with bloodwork and any negative stuff will resolve when the mtx is stopped.

Patience is the key, here. It may take many weeks or a few months before you determine if it's working for him or not.

Whew, I didn't mean to type so much.   Email me privately if you'd like to chat. The door here is open 24/7. Some days it's a bit slow but someone will get back to you eventually.

Hang in there, Mom! You're doing great!

Carolan

carolanivey AT yahoo DOT com

Carolan-

Thank you so much for getting back to me - I really appreciate any advice I can get.  We did not get a prescription for folic acid-from what the pediatric rheumie told us - that too is a pill form and if needed we will figure out a way to crush it up and give it to him.  He did tell us about it though and told us to be on the lookout for refusal to eat/drink or the mouth sores and then we can cross the folic acid bridge when and if need be.  I was just thrilled that he gave us a prescription for motrin - my husband and I looked like junkies everytime we went to Walgreen's and came out with 10 bottles of children's motrin!!!!!!!! 

This whole thing is so surreal - when we had our initial consultation with the ped rheum he mentioned mtx and enbrel/et al but i thought we were talking years before the reality of any of those drugs came up.  Instead we go for his first two month check up and WHAM - we are putting him mtx.  I was so shocked.  I know I should be glad that we have an agressive dr who isnt taking a wait and see approach but instead wants to treat this head on and get relief for the little man!  I am going to keep my fingers crossed that this works but as I can tell from these boards - it is years of trial and error!  I am thrilled that our first dose of mtx went down without much issue and hope that the future stays along this course!!

Thanks again for all you help!

Glad to be of help, Heather!

Kids are extremely resilient, as you're going to find out. Their metabolisms are different from an adult's, too, so take anything you read here with a grain of salt.

I'm with you - I'm glad your son's rheumie isn't messing around. Mtx is a good medication. Yes, it was originally a cancer treatment, but the doses we take are miniscule compared to someone on cancer chemo. I'm less afraid of mtx than I am of prednisone...now that stuff has some nasty side effects you don't want to deal with. Sometimes it's a necessary tool, but the less you have to use it, the better, IMO.

Anyway...I hope you hang around and keep us up to date! Be strong, do your research, and be his best health advocate. If your rheumie is associated with a pediatric hospital, there are social workers on staff there you can help you - take advantage of that and pick their brains for services that may be available, adaptive devices (if necessary), dealing with schools, etc.

One last piece of advice: Try your best not to "protect" your little guy more than you would a healthy child. If he feels like doing something - anything - let him try. Never tell him he can't or he shouldn't. At the same time, make the little dude do his chores, don't let him get away with nothin'. [grin]  It's a fine line, but you'll walk it. You're already doing it.

Remember to breathe.

Hugs, Carolan

Hi Heather,

Everyone's experience with mtx and side effects are different, but fatigue and (for me, low grade) nausea are not uncommon.  I have learned that not letting my stomach get too empty is the best way to avoid nausea.  Therefore, making sure he has crackers or something else in his stomach between meals may be helpful.  I also find I have aversions to foods that I would normally eat, which might explain his "pickiness".   I also take my medication at night, since sleeping it off is a great idea.  I would say I feel off for about 24 hours, "my mtx day", and completely back to normal (whatever that is) within 48 hours.   Headaches are another side effect that I used to get, (but the motrin should take care of that.)   Carolan brings up a very good point about the folic acid.  Folic acid is very helpful in  avoiding mouth sores and minimizing fatigue.  I send [[hugs]] to you and your little  man.  As a mom I can only imagine how "surreal" and scary this whole thing must be, but you found a great site, with a lot of us to help support you with whatever experience we have.  Best of luck to you and your little guy

Ladies-

Thanks again for all your help.  This is just the information I was looking for.  I have a feeling I will be picking all your brains in the days/weeks/months to come!

The good thing is that this doesn't seem to be slowing him down - he loves to wrestle with my husband and son and thinks throwing himself on the floor is one of the funniest things in the world!  I think he is starting to figure this all out though!  All weekend he was grabbing his ears and saying 'oweeeeee'!  I didnt know if it was an ear infection or not so took him to the pediatrician yesterday to have a look see.  Well, he is perfectly fine - didnt even have any congestion anywhere.  My ped and I decided he played me and that he knows that when he says 'ouchey' I jump! 

Heather

LOL!  Pretty soon you'll develop the fine art of raising your eyebrow and saying "Reeeeally?" with just the right vocal tone.

Does he have dimples? Watch the dimples. The deeper my daughter's dimples, the bigger fib she's telling. She's 22 and the dimples still Tell All. She absolutely cannot control it! 

Heather,

The ladies have summed it up pretty good.

I just recently moved over from the oral to injections.

while on the pill form I suffered from the standard Stomach issues and the fatigue, sensitvity to the heat.  To help this I would have a snack about an hour before bedtime and then take my pills. I would always sleep with a light fan on in the room yes even during the winter. You want to be careful with a two year old though and making sure he isn't over heated or too cold.

Since switching to the injectable i only have the loss of hair and a small amount of fatigue.

I admire your commitment to your son and wanting to learn what you can about this disease. My granddaughter has a metabolic disorder that is quiet rare and has had to go it alone with no support sites no matter how much we have looked for one. 

There are several of us that have had this disease since early childhood and Carolyn is right do not treat him like he is breakable. Believe me they did that with me and I regret it; I finally rebelled at the age of 18 and did what i wanted too and it was the best thing I did for myself.

We are all here when ever you need anything.  Remember if you need immediate attention click on one of our names and you can send an email to any of us. It goes to our personal email accounts.

Tess  (33+ years of RA)

Previously Heather Cichon wrote:

I was hoping some of you could help me understand how my son is 'feeling' when taking his MTX.  He was diagnosed with polyarticulate (sp?) JRA at 20 months.  We have been taking motrin 3x/day since his diagnosis and saw a pediatric rhuematologist in February.  He kept us on the motrin but at our last visit he prescribed MTX .4mg once a week.  As my son is only two and can't take pills, we are giving him the injections but orally (does that make sense??!?  We mix the shot with some apple juice and have him drink it down)  He took his first dose Saturday - I did it at night and he slept through and seemed relatively fine yesterday - a little extra cranky and finicky with food but we got through.  I guess my question is I dont know what he is feeling or what this drug is doing to him - I get Motrin - I take it and assume it has the same reaction on him.  As for this and all future drugs, until he is able to speak and tell me how he is feeling - I am lost and it scares me to death.  I was hoping someone could break down how they feel after taking it, etc. (nauseous for 24 hours/48 hours/all week?  tired/sore/etc/etc)   I know that everyone reacts differently to different meds but I just want to try to get my brain around this.  Thank you all so much for your help

 

Heather

Heather,

I'm new to this group. The ladies have covered all the bases. I can't put enough stress on the folic acid. Please read everything here about folic acid and leucovorin and then do more research on it on your own so that you can sit down with the doctor and hopefully work out an appropriate dosing for your little guy. Based on my husband's experience, if he likes mac and cheese, that might be a good starting meal for the mtx to be taken on. Whether my husband was on large iv doses at the hospital, or, as now, on small doses at home, we were told that there is a 24 hour window of increased susceptibility to infection and a 48 hour window of "cautionary" susceptibility. David doesn't have RA and has twice had to have been on extremely large doses of treatment. Maybe this window of susceptibility is just too much for most RA patients. But, he avoids crowds, movie theaters, malls, and (sorry) small children during his 24 hour window at the advice of his specialist. This is why he doses on Friday and starts "rescuing" with folic acid (leucovorin in the past) on Saturday. The folic acid does more than help with side effects. It would help protect your little guys cells from being damaged by the MTX.

When our son was very ill as a little guy I would make regular appointments and I would make special appointments when I advised the scheduler that there was quite a bit to go over and that I was willing to pay for two visits if they would schedule us in with extra time. They worked with me on this so we could get all the extra questions answered.

A lot of people talk about mouth sores, for my husband it would be painful sores in the nose. He uses a saline solution twice a day and keeps the inside of his nose very clean with q tips. Doing this and taking the folic acid keeps that under control.

Speaking of mouths, he gets a lot of extra plaque when he takes mtx and we schedule him for extra cleanings.

The only other thought that crosses my mind........did I see that he has swelling in his hands and wrists. This is really "pie in the sky", but is there any chance that he is getting into an irritant that is hard for his already overtaxed immune system to handle? Carpet cleaner (from playing on the floor) or hand wash at the day care, anything? You can't put him in a bubble, but there may be just one or two things that make him less comfortable than he could be. For instance, when on mtx, my husband is much more susceptible to rashes. I use Tide "Free" and double rinse everything. Big help. California Baby powder with clay and tea tree oil also hugely helpful.

I'll be watching for your posts. You'll find a routine that works for him and he'll be doing better soon. 

Best wishes, Texasgirl

[[extra plaque]]

FWIW, I've found that using a good electric toothbrush has gone a long way toward reducing plaque build-up on my teeth. Esp. my lower front ones.