PR Vent 3 year olds and what is normal

fancynewbeesly · June 2014

So now that Reese is 3, she is definitely becoming harder than 2. But now, I am questioning ALL. THE. TIME. is if it completely normal, or just side effects/not feeling well/etc of medicine. It is WAY too hard to separate the two for me. We were in the hospital last week in patient for 24 hour chemo drip---we got home Saturday night. Unfortunately in the hospital, her routine is completely shot. That is my doing because, unfortunately DH works--and the hospital isn't very close to us---so I am with her all day/long and he is there on the weekends. So part of it, is I just don't care and in survival mode. She would fall asleep around 10pm or so at night.

Now that we are home, bedtime is becoming a HUGE issue. Sunday night, she fell asleep around 9:30 or so. She was completely exhausted yesterday, and fell asleep on the couch before 7. However, she was up every 2/2.5 hours throughout the entire night crying. We have no clue why, but she couldn't stay asleep and be comfortable.

Today she was at my MIL and so incredibly angry/mad/etc---mostly because she was overtired. She did nap but was better in the afternoon.

This evening she was giving every excuse about bedtime. She didn't eat dinner much. She was telling me her teeth hurt. (mouth sores are forming) Unfortunately, she HATES the medicine that I put on it. So, finally the only way to get it in her mouth--is I dip her pacifier into the medicine and it coats the mouth sores. I did that. I went to put her to bed. 15 minutes later she tells me she is hungry. She wants to eat. Which I brought her downstairs for dinner again--she did eat. I then brought her upstairs. She told me that her arms hurt. Then her legs hurt. She said she was hungry again.

I seriously can't figure out (except for when she says her teeth hurt)---if she is stalling and just being a normal 3 year old. Or that she is being a drama llama (which is completely allowed) or that it really is the chemotherapy and all the combinations of drugs that she is on.

Watch. We finally get back into a bedtime routine that doesn't suck. And then we go back inpatient for more chemo on the 13th, just to start freakin' all over again.

algalphys · June 2014

I can't imagine how chemo and hospital time would disrupt a schedule. My 3 yo has never been greatly scheduled and it's a pain in my ass! He is routinely up til 10 or later, only naps in the very late afternoon if at all but sleeps in rather late. Part of it is because my job was flexible and I didn't need to have him anywhere at a certain time. But now he may be starting preK in the fall and things will have to change. My job is also getting less flexible and I'll have to be at work for 8 am.

No advice for you really but I can considerate a bit. Not looking forward to the changes fall will bring in this house.

klondikebar · June 2014

It sounds like normal behaviors that are being exacerbated by her health problems IMO. Anytime my kids weren't feeling well as a toddler, their routines were thrown off for days for just a minor illness. Their behaviors would become unpredictable when overtired. I imagine with everything she is going through, she can't settle into a routine enough. It's just the circumstances putting her normal toddler tendencies in overdrive. Hang in there and I hope it gets easier for you all. You sound like you are doing a great job in survival mode.

fancynewbeesly · June 2014

ClaryPax said:

DS doesn't say that things hurt very much, so I imagine when she says that she means it. Maybe with dinner it hurt too much too eat but she was hungry, so when the medicine took effect she could finally eat. She needs to sleep more for her behavior to be better- no advice on that unfortunately as she very well could not get comfortable and that's why she couldn't sleep. Can you give any pain killers? And I think she is stalling on bedtime too. I would give her 1 opportunity to eat at dinner and maybe another one before bed, and then cut it off there.

Unfortunately no pain killers. I wish

I will try to bring up tylenol to the oncologists again---but they don't feel comfortable giving it because if she does run a fever it could mask it and we wouldn't know.

dashofreality · June 2014

I mostly lurk over here, but you are doing such a great job. In your situation, I'm sure I would just do whatever was easiest and kept everyone the happiest.

If you think it is just stalling and not pain, we have had a lot of success with a new technique lately. We had been in horrid bedtime battles, especially if she napped and wasn't tired. We get DD ready for bed and give her a coloring book (big book of boo boos) and tell her that she can play/draw in her room until she is tired. When she is ready for bed she can come and get us. The first time she comes out, it is bedtime. She stays in her room for 10 - 30 minutes and then she goes down much easier. And we got some quiet time in the meantime. 3's suck.

RayRay007 · June 2014

Part of it must be normal 3 year old stuff, we're going through the same thing wih DD right now. I dread bed time. It's a two hour ordeal of excuses and crying and negotiating and finally me being really angry. And she's waking up at night crying for no apparent reason. At least she's only waking up once.
But of course, the chemo making her feel lousy and the hospital change in routine I'm sure makes it way worse. Hang in there. I don't have much advice because I haven't figured out anything that works yet.

ILoveBoys · June 2014

3 is hard anyway. Adding in all the extra things she's dealing with has to just make it harder. I'd say take it day by day. Maybe you can have a "hospital" routine, or special things you do just while you're there? As far as sleeping at home- will she go to sleep easier if you sit by her bed?

Hugs to you guys.

fancynewbeesly · June 2014

Thanks for the advice. Last night she still woke up a couple times during the night---I want to say 11; 3 and 5 crying. Right now I REALLY believe that her mouth sores are bothering her. Since she did sleep better last night, despite the wake ups, she was happier. The only way to get her to have the magic mouthwash which does help with the sores, is if I dip her pacifier in it and then she uses the pacifier. Today, she complained less about them hurting--so hopefully they are finally healing. She complained when brushing teeth and once at the babysitters. (We gave her some of the mouthwash during the day to use). She did eat well today, and fell asleep fairly quickly without a fight at bed. I am seriously hoping the worst is over---until the 13th when we go back on this chemo again.

PinkDahLia44 · June 2014

I don't have a 3 yo or older, so I don't have advice, but I wanted to say that you are a wonderful mom. I think if my kid was in and out of the hospital and having chemo, I would just give him whatever he wanted. You are trying to do what is best for your little girl and it's awesome.

So I'm not sure if that's coming out the way I mean it, but what I mean is that you are awesome!

And judging by your siggy, your DD is a beautiful little girl.

Meeshe · June 2014

Sorry for the late reply. I have been following your situation loosely, I don't post much. I just wanted to say though that we're dealing with a serious illness with our 6 year-old which started in December. Trying to figure out when/how to set appropriate boundaries has been an ongoing struggle (once we got beyond the critical period of course). She is not on chemo but is on weekend steroid "bursts" and monthly IV treatments and I am struggling (and often failing) at keeping my temper during her most challenging periods, even though logically I understand that it may not be fully within her control. And yet, I can't let her use her illness/treatments to get away with everything either. So my post is mostly just empathy...it's very very hard,.

fancynewbeesly · June 2014

@Meeshe thank you for your post. I hope your daughter is doing okay. I definitely get the steroid rage here----in addition to chemo Reese has been on steroids intermittently, and that balance of disciplining and not letting her get away with things (because I know that I will feel the effects years later) and giving in now because of wanting to just give her everything is a tough line.

Meeshe · June 2014

Just saw this. We're doing well at the moment. Thanks. Hope Reese is doing well too.

bumpuser1691848 · June 2014

There is a girl on an offboard I'm on who's daughter (also named Reese) just finished chemo. Would you like me to get her back over to TB so y'all can talk? She's always open for questions and could help you understand all this better.

fancynewbeesly · June 2014

kimandhuck said:

There is a girl on an offboard I'm on who's daughter (also named Reese) just finished chemo. Would you like me to get her back over to TB so y'all can talk? She's always open for questions and could help you understand all this better.

I definitely wouldn't mind talking to her--she can PM me if she wants

Luckily, Reese seems to be sleeping through the night again---she definitely STALLS at bedtime with everything possible and imaginable way, but isn't waking up in the middle of night hysterical. The spiderman nightlight seems to work wonders

jeephappygirl · June 2014

No where near your situation but we found a trick that is helping with bedtime. We use the timer on our phone. We give a five minute warning and let her start the timer. Since doing this the past few months bedtime is no longer a battle. I have even used it out at the zoo to speed her along. It gives her some control & lets her know what is coming.

punkfiction_v.3 · June 2014

hey.

ok someone mentioned us above -- i have reese (now 4) who was on chemo for 16 months. we finished in april. i think my blog is in my sig.

i dont know your daughter's story or why she's doing chemo, but a lot of those things sound "i am a sick kid" related. what you said above is exactly it -- they arent on the same discipline level, they take steroids, etc.

my daughter has a brain tumor so we dont get to be "done" just because we are done.

so i definitely give in to her often.

punkfiction_v.3 · June 2014

also what chemo is she on?

fancynewbeesly · June 2014

punkfiction_v.3 said:

also what chemo is she on?

My Reese was diagnosed with high risk acute lymphoblastic leukemia in January. She is on intensive weekly (or bi-monthly) chemo for about 6 to 8 months, and then on less intensive once a month chemo for about 2 years. Right night she is currently in patient in the hospital every other week for about 4 days. She is getting vincristine, high dose methatraxate over 24 hours and a lower dose methatraxate into her spinal tap. We are going back on Friday for the start of it again. However, since January she has been on many different chemos and steroids---too many to name and remember.

punkfiction_v.3 · June 2014

Starearedkid said:

punkfiction_v.3 said:

also what chemo is she on?

My Reese was diagnosed with high risk acute lymphoblastic leukemia in January. She is on intensive weekly (or bi-monthly) chemo for about 6 to 8 months, and then on less intensive once a month chemo for about 2 years. Right night she is currently in patient in the hospital every other week for about 4 days. She is getting vincristine, high dose methatraxate over 24 hours and a lower dose methatraxate into her spinal tap. We are going back on Friday for the start of it again. However, since January she has been on many different chemos and steroids---too many to name and remember.

yeah i have a lot of ALL friends. we did the vinc almost weekly for the whole chemo protocol (we had off from vinc every 3 months) anyway, that can make you feel achy, supposedly. my ALL friends say that the up front is like having a totally different child, but then that passes and all is right again. once you go into maintenance, its more "smooth" after that.

steroids wear off. and chemos are out of system within a few weeks. (and with methatrax, the next day i guess bc you have to have no traces before you leave, right). so those things dont effect her now. but as a whole, she's going to be a bit more... needy. and thats bc she needs more. annnndddd because we all let them get away with more.

dd3 is in my bed. still. after her second brain surgery (that one was dec 2012), and we were home, there was no way i was going to let her sleep away from me. now we've moved, finished that chemo protocol, annnnd she wont sleep in her bed. i havent slept through the night since then - and then we had ANOTHER baby - and so i spend all night getting drinks, some cheerios, feeding dd5, etc. would it be easier to just make dd3 go upstairs and GO TO BED? sure. but meh. these are the things i did for her inpatient every time, ill do them til she's ready to move upstairs full time.

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