I've searched the boards for other parents of toddlers, but I haven't really found what I'm looking for, so I thought I would start a new discussion.
Elsa is 18 months old, diagnosed 14 days ago with Pre-B ALL. We are in the middle of induction right now, so she is taking the Decadron 1.75mg. twice/day plus the chemo she gets in clinic ( IV vinchristine, IT methotrexate, IT cyterabine). We are still waiting for the results of her cytogenetics (maybe today!) and Day 29 bone marrow to see which risk category she is in. Right now, she is average/low-risk, I guess. No CNS involvement, WBC <50,000, caucausian, female.
Anyway, enough background. Here is my issue:
She was an early walker, but a late talker, so she can still only say "mama" and "dada" and she doesn't even really say those very often. She understands absolutely everything and follows directions well (when she is in the mood!) so we are not worried about her comprehension. It is so hard though to have her on this treatment without being able to communicate to us (aside from whining and screaming). I know they say that steroids make the kids irritable, but she is I-R-R-I-T-A-B-L-E! We only get a 5-10 minute break between outbursts and sometimes it seems that she just cries all day long. She is not indicating any pain to us obviously -no pointing, no doubling over. And, for the most part, she can be soothed for short periods of time with nursing or food. I'm concerned that perhaps she is so irritable because she is in pain, but the doctors say that, unless she is totally hysterical and inconsolable (which she is not), this is probably steroid-related irritability. They say that some kids do really poorly, mood-wise, on the steroids and perhaps she is one of them.
We gave her morphine (the only pain medicine they've given us) two days ago because she had been crying on and off for three hours and would not nap. The morphine helped her nap (of course) and seemed to improve her mood for a few hours afterwards, but I am just so hesitant to have my toddler doped out on morphine! I want her to be comfortable, but opioid narcotic use in an 18 month old really worries me.
*sigh* I guess i don't know exactly what my question is, but I would love to hear from other parents of toddlers - especially toddlers or babies who are not yet talking. What is your experience with pain management? Irritability? Steroids?
Thanks for listening.
It's so tough when they are too young to tell you! Even at age 3 and 4 Emma was only able to tell us so much because sometimes they can't even pinpoint the source of their discomfort or pain. Honestly, when she was on steroids we pretty much gave codeine around the clock - it was the only way for her to get any relief.
I'm sure there are some downsides to giving small children narcotics and your oncologists can give you more information on that. You definitely have to weigh the risks/benefits. But here's my two cents for what it's worth....I believe children have to be fed, well-rested and relatively pain-free in order to develop and grow normally. Narcotics might be the lesser of two evils when you look at it that way. You don't have to accept that it's OK for her to be that cranky all day long just because she is on steroids because there are medications available to help with that. Some kids end up on anti-psychotic meds and some kids are just extra hungry for a week. Sometimes it's not the steroids at all - it could be pain and they are blaming the steroids because it's the most reasonable assumption.
I think you have already discovered that the best way to find out if she is pain is to give her the pain med and see how she responds. It worked, so you can be pretty sure that there was some pain in addition to the steroid induced irritability. Talk to her oncs and make sure the dosages are low (they should be - they will start you low and increase if needed).
Everyone has to find the right combination of meds for their own children. All I can tell you is that we used them as-needed on a regular basis (and at times, rather liberally) and Emma's fine. She is at the top of her class and as healthy as she'd be had she not had cancer from what her doctors can tell. And she's not addicted to pain meds or anything like that. She actually didn't like taking them and we had to make her do it when we knew she needed them.
Hope that helps and that this gets better SOON!
Daniel is 2, so older than Elsa, but I'll share what we went through in hopes that it helps some.
I referred to Daniel on Dex as a 2 year old with Roid Rage, because that was the only thing that fit. Daniel would scream every time someone looked at him, he would scream and cry if you were 2 seconds late delivering his food, and scream louder if what ever show he was enjoying on Nick Jr. went off. The irritability was soothed at times by carrying Daniel upstairs to play with his trains, but soon even that ended in a fit. I was also surprised to see him show a general lack of interest in things that used to excite him. He was just miserable, and since he wasn't walking due to pain he would throw fits when he wanted to get up and couldn't. (All of this was really strange because Daniel has always been an even tempered child and really easy going).
As for the pain; Daniel didn't seem to have much though he was on Ibuprofen (I know the ibuprofen rule, but Daniel's platelets were good and our Dr., said it was better than Tylenol for the pain and didn't want him on narcotics if he didn't need to be) daily for pain and that seemed to take the edge off of what little hip pain he was experiencing. So maybe ask your Dr., about something lighter than morphine for the pain. Though I was convinced the neighbors were going to call social services due to the screaming from Daniel when it came time to take his meds; he would go into an all out screaming rage when he saw the meds coming and many times it took hubby and me to hold him still to get the meds in him, now he just takes them.
Within a few days of finishing the Dex Daniel started smiling more and his mood was changing; by 1 week off of induction he started walking again (slowly and holding on to walls but he was up); 2 weeks off, he was playing in the back yard again and chasing his cousins around; so the Roid Rage does end.
I don't know what the t.v. rules are in your house but Daniel did little more than sit in his red chair and watch Nick Jr all day, from the time he woke up til nap and bed time; just because he really didn't want to and couldn't do much more. So maybe get Elsa comfy and turn on the cartoons; it isn't the best solution in the world but it worked to pacify Daniel and that was good. Also try music, something soothing and see if that gives her something else to focus on.
Just know this will end, I had moments of doubt that I would ever see my Daniel again, but he is back and the Roid Monster is gone (for the time being anyway). Good luck, I know this didn't help with the communication issues, I just wanted you to know that Elsa will reappear soon.
I am so sorry your little one is having such a tough time. I do think it may be an indication that there is some pain going on as well due to how she responded after the morphine. Ally is an incredibly verbal four year old and there are still times when I think she is in pain and it isn't a localized thing. Like she'll be so irritable but NOTHING helps except codeine. It seems her pain is more an all over uncomfortable feeling than something she can actually describe. And yes, steroids can just make them absolutely 24/7 mad and crazy. It really can be trial and error to find out. If the pain meds seem to help then I would continue them or give them again to see if it was just a fluke before.
Have your doctors talked about her taking gabapentin/neurontin? I know this has helped Ally tremendously. It blocks the nerve pain and many children have to take it throughout treatment. Allyson takes hers during steroid pulses/vincristine (we're in the long term phase now)
I know everything is so overwhelming and I promise you that it won't always be this terrible.
My little one was under one when diagnosed and was unable to communicate her needs. We were hesitant in the beginning to get the pain meds but when we saw hints of our happy girl, we knew it was the pain relief that helped. We, too, followed her lead and didn't push. If she wanted to sit and watch tv for hours on end, then so be it. Thankfully she didn't miss the social interaction since she hadn't really had it either. It is hard, I know, to not know what is wrong and just take guesses but we had no choice. If there is any upside to having a child diagnosed so young, it is that much of treatment is forgotten and it is more the parents who are scarred from the experience than the child. It's our burden as parents I suppose. Best of luck to you as you go through this very hard time in your lives. My child is now a few years off treatment and is doing remarkably well. Five years old and healthy as a horse with no memory of anything. Life will return to normal for you one day again. Just focus on getting through each day one at a time.
My son was dx at 19 months and was not very verbal at the time. He could not communicate much to us except that his whole body told us he was simply miserable. I also think he just felt so awful he could not muster the strength to talk. He didn't walk again until about 2 months into treatment. To this day, especially during Steroid week he doesn't talk much, doesn't smile and rarely walks.
The best thing ever for him was nursing. For whatever reason, our oncologist told us to stop, but I couldn't and didn't until he was 2.5. It was the only thing that got us through and I nursed completely on demand. In fact, it was the only thing he would eat for many many weeks - particularly after the initial steroids during induction were over. It was SO hard to figure out what was bothering him. He was physically ill and must have had some bone pain and psychologically traumatized. Do you have a skilled child life expert or psychiatrist to give you some ideas? Our first hospital was good at getting us connected to those folks, but our current hospital - not so much. I still don't know if I did enough or should have done something differently, but we did get through it and he is doing well - 2 steps forward, 1-2 steps backward, and just when I am about to lose it, 2 steps forward again...
I think it will take some time and trial and error just like you are doing. One thing I have been learning to do better is to really follow my gut - if I felt the only thing that gave my son a break was morphine, then I would do it. However, if it is concerning, keep pushing for alternatives. I have found that the actual oncologists don't always have the best understanding of what our kids are feeling or what they need. I'm sure parents on this board will have great advice.
I hope your daughter feels better soon. Keep us updated!
Evan was 24 months at DX. He was not very verbal either and that seemed to be the hardest thing to deal with because I just didn't know what he needed or how he felt. I read all of the side effects of the many different drugs and became frustrated that he would not be able to tell me if he had a headache tummy ache, etc. What I remember of induction, he sat around alot, he spent the first few weeks home in the recliner in front of the TV watching Thomas the Train and eating like a mad man! While he was still in the hospital he did receive morphine and that knocked him out for 7 hours!! The oncologist told me that the kids this little are not in pain and that really pissed me off and I made her give me an RX for Tylenol with codeine. I have been told it isn't good to give them narcotics this young because they can have addiction problems later or whatever but my take is he also doesn't need to be in pain. (And I am ~was~ so anti-pain med that I gave birth twice with out pain meds and they were both 9 lb babies!!) But I just can't have my baby be in pain. So during induction he used the tylenol (always checking for a fever first) and neurontin. He also received pepcid every day that he received Dex because they said it is rough on their tummies. Eventually he used less and less tylenol and actually hasn't had any in months. Just remember to take it day by day, this will pass. I know the verbal issue was so difficult for me.
Evan has been on treatment for 10 months now and his vocabulary has grown tremendously!! At DX he knew about 50 words and now he will sit down and "tell you a story" basically paraphrasing one of his favorite books in detail. (we have don a lot alot of reading trying to increase his vocabulary) He can tell me where he hurts and now during steroid pulses he gets really hyper and jumpy but in an angry way like wanting to squeeze me, scratch me, and grits his teeth .He will try to hit , pinch, and scratch his little brother. He will say "I'm so angry and I'm so mad!" He achs alot like I will try to pick him up he just says ow, ow ow. So during steriod pulses I kinda leave him alone and give him what he wants to avoid meltdowns but he is not currently on pain meds. In my experience the irritability and tantrums got better the more he could communicate. I hope this is the case for you too.
Georgia, do you have a copy of the FLACC scale? Our hospital has signs with smiley faces morphing into red/rage faces that the little ones can point to. I found a lot of links on line, but none with the visual component. I'll keep looking though...
Sorry this reply is so long, but I am so appreciative to everyone that took the time to write to me. I wanted to write something back to everyone! Your answers were all so thoughtful and helpful.
Thanks for the reply Kimmeebee - I agree with you on the "fed, well-rested, relatively pain-free" idea and we have found that, without the morphine, she is getting 3-5 fewer hours of sleep per 24 hours than she used to and she is just miserable. I am still so wary of the medication, but we have tried to be a little liberal with it since Friday (when she got her last vinchristine). Last night, we gave her a dose and, for about an hour, she was walking around the house, smiling, and playing with us, almost like her normal self. I almost cried it was so good to see a little glimpse of the little girl I used to know! It's nice to hear that Emma took pain medication somewhat regularly during treatment and is doing fine now. We gave Elsa morphine for the past two nights and though it is agonizing for me, it is more agonizing her me to see her so miserable without it. For now, I guess we are going to have to go with what works.
ABBMommy: I will definitely ask our docs about the gabapentin/neurontin. He had actually mentioned those meds during our first week of treatment when Elsa seemed to really be having a lot of nerve pain. For 48 hours after her first vinchristine, she was tugging at her legs and screaming all the time + walking on her tip toes and stumbling a lot. He said if the symptoms got worse, we might consider neurontin - luckily, she seems to be adjusting a bit to the vinchristine. Her walking is still a bit unsteady, but shes not always trying to rip her feet off anymore (which was so scary to see!). I think I will open up the discussion with him again though.
JeriL - it was comforting to hear that you got your Daniel back after the steroids. We are definitely dealing with the Roid Monster. It's so hard to see her so angry and miserable. The other day, we took her on a walk, in her stroller, at the park and she had a total meltdown - 20 minutes of screaming in my arms until we could get back to the car. Stupid us hadn't brought pain meds with us on the walk and she was just miserable. I wanted to yell at people who saw us and say, "She's sick! She has leukemia! Don't you dare judge her!" It's nice to hear that we might see glimpses of our sweet girl return once this long round of steroids is finished.
Proudmom: I love hearing about kids who are off treatment and doing well. Such a light in the darkness for us. Do you have a caringbridge site? If not, or you prefer to keep it private, I totally understand. I just love seeing kids who are done with this nightmare and have made it to the other side.
Ingrid: I'm just flabbergasted that the oncologist told you to stop nursing! What on earth was his/her motivation for that?? Thank goodness you followed your gut on that one. Luckily, everyone we have met has been supportive of my continuing nursing (even if they do raise an eyebrow that I am nursing what they see as an "older" child). Before her diagnosis, she was nursing 1-2 times/day. Now she is nursing sometimes every 20 minutes! It is exhausting, but I am so, so grateful that there is something I can do to comfort her! Would you mind if I messaged you to ask you some more questions about nursing a toddler through treatment and how weaning was for you guys?
Mary: I was grateful to hear that Evan has angry outbursts - because Elsa is doing that too. Sometimes, out of nowhere, she will just grit her teeth and hit me or pinch me - and she looks so angry! It breaks my heart because she is so clearly confused and out-of-sorts and feeling miserable. Hopefully Elsa will experience the same growth in her vocab - already she seems to understand so much more! We know she understands everything - we are just waiting for her to be able to tell us how she is feeling! Oh - and I have the same aversion to pain meds myself- no pain meds at birth + 9.4 lb. baby . I would do it 100 times again if I could just take away all of her pain.
Norrim04: Thank you for sharing the FLACC scale. I'm a nurse and I use the FLACC at work all the time in the ER - so I was so embarrassed when you shared it with me and I realized, "Duuuh! Why hadn't I thought of that!?" Thank you! It has been such a struggle to stop seeing Elsa through my "nurse" eyes - but in this case, it is actually a good idea.
And just one more story: We took Elsa out on my in-laws boat today. Crazy-sounding, I know. Who takes their kid, who was diagnosed with leukemia two weeks ago, out on a boat!? We figured it was either sit in my lap and nurse on the boat or sit on my lap and nurse in the living room - so we chose the boat. It was overcast and we sat under the awning, snuggled up with her blankie, eating a constant stream of snacks (of course). It was actually wonderful for her to get a little fresh air and I think the distraction helped her - she didn't need any pain meds all day and she seemed as content as a baby getting induction chemo is going to feel - at least she wasn't screaming all day. One good day in a sea of bad ones. I'll take it.