16 answers

Coping with a Strong Willed 2-1/2 Year Old During Chemotherapy

Okay here's my problem. My 2-1/2 year old daugher was diagnosed with Leukemia back in September. From the moment she was diagnosed we had to live in the hospital for the next 45 days for her first two phases of chemotherapy treatment. Prior to this she was a very happy, well adjusted little girl. She would take naps and go to bed at night with no issues, her only problem was sharing. Being an only child she didn't have much luck with sharing with her cousins. While we were in the hospital she basically got what she wanted, whenever she wanted and her medications made her moody and irritable (steroids & chemo) and those behaviors were accepted, even expected. My problem is now that we are home again after our hospital stay she has turned into a little Jekyll/Hyde person. She can be happy as a clam one minute and then lying on the flooring crying, screaming, kicking, etc. the next. I find myself at my wit's end and then feel guilty if I do raise my voice to her because it seems to be the only way to get through to her when she gets like this. She no longer goes to sleep on her own, I've taken to sleeping on the floor in her room (she got used to be me always being their for her 24/7 while in the hospital). I've tried to be firm and leave her alone, but I am worried she will hurt herself during one of her tantrums and because of her chemo treatments any injury, even a bruise, could be potentially dangerous for her. The other big issue I am having is that she needs to take medications while we are home between hospital visits and she absolutely REFUSES to take her medications. I have asked the psychologist that has been assigned to us, but she is a 25 year old grad student who has never actually had to deal with a child so I am hoping some real world moms might have some advice for me.

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So What Happened?™

Thanks to everyone for all the great advise and well wishes. We wound up back in the hospital last night as her diaper rash got really nasty. Finally one of the doctors actually made the same suggestion of getting the steroid in pill form and crushing it up as the liquid form is very nasty tasting. Prior to her last phase of treatment my daughter was very good about taking oral meds, but the last round of chemo left her with terrible mouth sores, so bad that she couldn't eat or drink for days, she had to get IV nutrition because it was so bad. She took all her meds today in the hospital like a good girl and now if we can verify that the cause of her diarrhea and subsequent diaper rash isn't c-dif (sp?) then we might be able to head back home tonight or tomorrow. Of course we have to head back down on Tuesday for her next dose of chemo, but being home is so much better than being in the hospital, at least for me it is. Sadly when we got here last night and we stepped off the elevator on "our" floor she actually said "Hurray". How sad is that? I think she likes being here because there are no rules like at home where mommy tries to create some semblance of normalcy and routine (not that I have succeeded!). Her tantrums at home were not steroid related, as she hadn't started her latest round of steroids until Friday night and that is when the refusal to take her meds started. The child life specialist here is going to help me create a rewards chart for taking her meds and diaper changes, even though I think she is too young to fully understand it, she might surprise me and really like the concept. She's proven me wrong in the past so here's hoping! If I can get those two problems under control I will be a lot less stressed and she in turn will be less stressed. She told me today that she was happy that mommy was happy, broke my heart. Made me realize how in tune she is in to my moods and I need to get better at controlling them since my attempts at hiding them are unsuccessful.

So again thanks everyone and Heleigh from Williston (?) I was wondering if you would might giving me your email address as you have BTDT within very similar circumstances.

Thanks again,
A.

Featured Answers

leukemia and chemo aside, sounds like 2-3 year old behavior. Do rewards work for taking the medicine like a big girl? 123 Magic talks about positive changes/rewards. Yelling, cajoling will not help, but may help you restore some boundaries at home. She is struggling for some order (just like you are). The hospital is a horrible place to try to get through toddler times, and no sleep, and no routine, and certainly not the home life you want for her. Best of luck through treatment!

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A.,

She sounds like a typical 2.5 year old to me, none of them like to share! LOL.

She is a sick little girl who wants mommy. You need to dig deep for some more patience and stop raising your voice at her. Her little world has turned upside down as yours has. If you need a brake...take it. Go out. Make sure you take care of yourself! What she needs at this time in her young life is maybe just you...if she is used to having you, Take her into your bed with you if your sleeping on the floor. I would probably wait on retraining her until she is done with her chemotherapy. I would also see if her meds come in flavors, if not you can buy flavors for meds at the pharmacy. Then I would hide in a juice or flavored water. Make yourself flavored water like hers and it will seem to her you both have the same drink. Make a game out of it. I probably would try to start a new day with new ideas to make her have a happy day with you and you with her. I cant stress enough that you do need time to yourself, even if its a walk or a run, take it.

You have a hard job taking care of a sick little one. Try not to stress out on the little things, you have a bigger worry with her being a sick little girl.

I wish you and your daughter the best of luck!
D.

1 mom found this helpful

Hi A.

My son was 3 1/2 when he was diagnosed and it is a fine line you need to walk. What we found is part of the behavior is that at this point they can control nothing in there lives so the meds become more of a control issue then anything else. The two things that worked for us was we found something to crush the pills in to mask the taste, we used orange Zyrex which is a flavored syrup, liquid concentrate used to make a Koolaide like drink or for snow cones and we used the oral syringe. Secondly we did the wait out, I would sit him away from everything no toys, tv and when on steriods no food until he took his meds first. Especially when he was on steriods the food factor really played in because he was always hungry. The sleeping part is a little harder to figure work out even after Taylor was off treatment we battled the not sleeping nights, what we eventually figured out was that in the hospital he got use to sleeping with a lot of noise, after 4 1/2 years of treatment for us he would freak out in a quiet house, so I bought a little fan that clips to his bed and he sleeps with it on year around. My prayers are with you and your family if you would like to talk feel free to contact me at ____@____.com. Taylor will be celebrating his 7th year anniversary from being diagnosed next month and has been off treatment for 2 1/2 years it is a long journey but you can and will get through it. The best advice I can give you is one that was given to me never say no to help, if you don't need it right when it is offered respond that you don't know what you need right now but can I call you later when I figure things out. The last thing is try to keep things as "normal" as possible, this is really hard in the beginning when your life seems to be run but meds and hospital stays but you need to remember this is a real long time for a child and this is the time she is going to remember so you need to make it as positive as possible. The best example I can give you if for us was schedule hospital stays, we planned them like mini vacations, we packed our bags, went out to dinner on our ride up to the hospital and "checked in". We always brought way to much stuff like special blankets and pictures to make the room more like home and Taylor always referred to his hospital stays as he was going to visit his "friends" at the hospital. Make friends with your nurses they're one of your best advocates for your child, take advantage of child life if it is available any distraction from you even if you sitting in the room gives you a little break from that "continuous entertainment time". Hope this helps, I feel like I've written a novel but these are some of the things that worked for us.

1 mom found this helpful

Hi,

Many hugs to you! I have BTDT (DD diagnosed at age 2 with ALL) and it won't be easy but you will get through this. It's hard to believe, but once she moves onto the "maintenance" part of treatment life will improve significantly--except for the awful steroids!

First, the medicine. I was lucky in that my DD was a dream about taking medication. That said, I always gave it to her in a syringe at night after she was asleep--so she would be half asleep when she got the meds. Mix it with water or juice--if it's 6MP it can't be mixed with citrus I think, but check this with your doctor.

Ask for the steroids in pill form and crush the pills and put into yogurt or pudding or juice. The liquid is god-awful. The pills she won't notice if they are crushed and mixed into food or juice.

The behavior--steroids are awful and there's not much you can do about how they affect her. She's going to be like that every time she has a week of steroids--and just as she's getting back to herself it will be time for another round of steroids! It's just a fact of life.

Don't expect her to be her normally well-behaved self. I would just give in. If she wants to eat pizza or cheese sticks for five days in a row, then let her. If she wants to lounge on the couch and watch TV all day then let her. She's going thru he!! and so are you, so the best thing is to make it easy for everyone all around and not fight it.

If she starts acting rude or inappropriate in public, then remove yourselves from the situation immediately and go home or go to the car until she calms down. If she's having a steroid tantrum there's nothing you can do to make her stop anyway b/c it's "irrational" behavior. When chemo and steroids are over then you can correct any mis-behaviors. You will find they probably disappear anyway.

Good luck to you and your family. My DD is going to be 6 in January. She finished her treatment 1 yr and 9 mos ago and is doing great.

1 mom found this helpful

Hi A., not only do medications affect our moods and behavior, but so does the food we eat. After reading about attention issues and food, I started doing research online.
Here is a website I found helpful: www.feingold.org.
I have always had a hyper girl. I could never get her to do a time-out, because she couldn't sit still.
When she had cold medicine she became a bear. Turns out, she is reacting to the artificial dyes and flavors in kids meds.
For the past year I have changed my 3 children's diet to ALL NATURAL. My daughter is now 14. When she avoids those artificial ingredients - ESPECIALLY DYES, including in any personal products for her hands & body & hair, laundry & dish soaps - SHE IS NOT A MOODY, IRRATIONALLY OBSTINATE TEEN, but CALM and HAPPY AND CO-OPERATIVE!
Artificial dyes, flavors and preservatives have been banned in Europe for years. In the first 3 months of All-Natural, my 2 sons, who struggled with delayed reading abilities - had their grades go up across the board 5-10 points in every subject. Not a single grade stayed the same or went down. My 5th grader's reading level steadily climbed 3 grade levels over 5 months. All 3 of my kids were suffering from grief related stress and diagnosed with GAD - general anxiety disorder last Nov. over losing their grandmother in June. I started going all natural w/food shortly after-wards and the anxiety disappeared.
My daughter no longer needs hyperactivity meds - which, by the way, we could not get without dyes...
SEE if you can get non-dyed meds for your daughter as a start.
http://www.linkedin.com/in/KarenSmithD
http://www.facebook.com/KarenSmithD
http://www.twitter.com/KarenSmithD
Research for yourself. Another helpful website is www.therealfoodchannel.com I wish you peace & good health!

My prayers are with you and your family for a strong, happy, healthy recovery!!!
Blessings to you! Stay strong!!

I am a 33 year old, counseling grad student and I have two boys 11 and 8. My 11 year old has always given me issues at bedtime. Recently I sought help to deal with his bedtime issues, since they have escalated due to the divorce between his father and me. It is hard to be objective when dealing with your own children, and when I am frustrated it blurs my decision making, so we saw a Lic. Social Worker. She suggested a reward based program, after one night of staying alone in the bed, with no getting out of bed and no "I need a drink" "I need to go to the bathroom" disturbances, they get a reward (we photo copy the calendar month to track progress)...then its after 3 nights, then 5. And then every 5 nights for a few months. If they mess up after night 2, it goes back to one night, and builds up again, but no prize is given for the one night, they have to be consecutive nights, or it goes back to the last milestone that you left off on. The reward can be a friend over, or a family movie night, going out for ice cream, it doesn't have to be fancy. She said the best rewards are ones that reward the child with time with you, because that is where the attachement is right now. The first night, you can give 3 strikes, of you little one calling for you, then two the following night, then one for the rest of the first week, especially since she is younger (my 11 year old got strikes too). It is working for us, he hasnt busted into my room in the middle of the night in about a month, and he goes to bed much easier. It isn't perfect but it is getting there.

A.
I am a mom and do oncology massage for children and adults.
What I have seen is explaining what is going on in 2 year old language because when she truely understands there are no problems with medicine or behavior because of the seriousness of the situation. Many people/parents are suprized at how easily the children understand.
The understanding that I have is that the behaviors are about her being scared. Also, because of the chemotherapy their bodies get stagnant with the toxins of what the chemo is doing which getting rid of the "bad" cells. The toxins made children/adults very grumpy. Make sure she is drinking lots of water,dark green vegetables help the liver detox or the green drink from Odwalla or Naked and fresh lemon is very helpful
Good Luck

C.

I don't have a lot of advice to offer, except to suggest that you ask for a new psychologist or have your current one paired with a more experienced supervisor.

I wish you and your daughter well during this difficult and stressful time and hope she recovers soon!

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