My son is 2 yrs, 5 mos, and tomorrow is day 15 of his 42 day delayed intensification phase of therapy. Last week he was on steroids for the first time since induction, and we had a miserable time managing his constipation. Has anyone else had this issue? I think our problem was that we didn't keep ahead of it, and once we started a laxative, the mild ones really wouldn't cut it. I ended up giving him Miralax after he skipped a bowl movement one day, miralax and senna after he missed it for 2 days, and magnesium citrate after he missed it for 3 days. He was so miserable while he was constipated, and the magnesium citrate worked, but it seemed really uncomfortable for him. He starts on another 7 day course of steroids tomorrow, and I'm not sure what to do about a laxative. I think I will start him on Miralax at his first dose of steroids, but I'm nervous that it will give him diahrea, if he isn't backed up at all. He hasn't been constipated since we left the hospital after induction, although he had a miserable time with it in the hospital. Does anyone have any suggestions?
Thanks in advance.
Jenn
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ALL - managing constipation question
Explore topics in this discussion:
MiraLax Colace Decadron Diabetes Constipation Pain Diarrhea Lactulose
10 replies
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- Newest first
- By Finny
- Posted October 5, 2009 at 8:47 pm
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Dear Jenn,
My son is quite a bit older and not in delayed intensification yet. He has had problems with constipation in the past. We've managed so far with stool softeners-colace, then miralax when he hasn't gone. I hope this helps!
Finny
- By fight4cure
- Posted October 5, 2009 at 10:37 pm
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My daughter was 9 when diagnosed with pre b ALL and is now 12 and in maintenance. She has has several bouts of severe constipation. First watch his diet...no food that bind....add fiber rich foods. Although her oncologists were worried about stomach upset they let her try Ducolax and it helped a few times...once she went 10 days without a bm and they had been trying everything and had to use lactilose(sp?) it was a thick, honey like substance but was the worst tasting medicine she has ever had....but the 2nd dose worked. I hope he feel better...
Stephani
- By jennm
- Posted October 7, 2009 at 1:22 pm
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Hi,
We had a similar problem on induction. Over all the prescription solutions we tried we found that Pear Nectar worked the best. Open a can of Kerns pear nectar (not juice) and try that. Everyone we have passed this along to has found it a great help. And lets face it, it tastes better and either will or won't work. No harm done. But honestly it was a God send that one of his doctors came up with when he was really effected by the steroids.
I hope induction passes quickly and with few side tracks. Good luck.
Jenn
- By monahan1
- Posted October 8, 2009 at 7:42 am
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Hi Jenn,
Sorry to hear about your son's dx. I'm curious - are you giving him the senna syrup daily when off steroids? I'm thinking you are but am unclear. We tried the miralax and our daughter couldn't stomach it. She took senna every day for 2 years and ate LOTS of fruit: breakfast, lunch and dinner - and a snack. Right now, if he's neutropenic, I guess I'd stick with lots of juice and fruit like apples with skins you can scrub or peel.
Good luck!
Sherry (Fiona's mom)
- By Abismum
- Posted October 8, 2009 at 8:55 am
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Hello everyone, my little girl suffered with terrible constipation during chemo until we discovered paediatric movicol - it is incredible. It works by retaining water in the bowel, softens any faeces that are there - so that when it moves it's not painful, can be used with children who have faecal impaction, doesn't cause ANY damage to the gut unlike those purgative remedies like Lactulose or Senna, Doesn't cause tummy ache or wind, it's taken as a drink that can sit in the fridge and you can add juice to it to mask the taste (my 6 year old didn't mind the taste) you can't overdose on it as it doesn't enter the body but stays within the digestive system - honestly it's brilliant stuff! Especially if you know it will be a recurring problem you can give them a low dose knowing that you aren't causing harm and are maintaining regular bowel movement - which in turn is great for the kids and their general health.
x
- By Ronda12
- Posted October 9, 2009 at 8:56 am
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Hi Jenn,
My son is Adam and we just passed our first of three years of chemo. We are in maintenance. I hate decadron! It is the worse thing we can give our children yet we have no choice. Adam did and still has issues. We don't use miralax anymore because he would get diarrhea. We give him a warm liquid, usually warm tea (decaff) and let him soak in a warm bubble bath with his toys. This has been working. He is actually on his last day (5 days a month, twice a day) of decadron for the month today. He always complains about his belly hurting at this time. He gets very gassy to. He said it feels better when we rub his belly. I hope this gives you some comfort. Even just to know you are not alone on the crappy journey. You are at a very hard stage right now.
- By chemosucks
- Posted October 10, 2009 at 3:29 am
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My son uses miralax. He is prescribed half the adult dose. I have so far learned to control it by giving him the prescribed amount if he is even slightly constipated and if not i give him a quarter of the adult dose daily. Here is the trick though spread it out through the day. It stops tummy trouble and helps to not get diarrhea. By the way my son is 3 and has lymphoblastic lymphoma which is treated basically the same as ALL.
- By cadmom
- Posted October 17, 2009 at 9:25 pm
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Thank you for all the replies. We had a rough week again with constipation. However, they had him start with mineral oil on Wednesday, and that seems to be really helping, without the gas or cramping that some of the other laxatives have caused. I will mention some of the other suggestions the next time I am in clinic.
I don't have him on any laxative regularly, because when he isn't on the steroids, he eats a really good diet, lots of fiber and fruits, and has at least two good bowel movements, sometimes three every day. However, when he's on the steroids he won't eat any fruit, and he just packs the carbs in. He only weighed 28 lbs two weeks ago, and he's already up 3 lbs after being on the steroids. I know most of it is stool. I'm hoping the mineral oil will help, but we just need to figure out when to start giving it to him to stay ahead of the constipation. I guess it's a work in progress.
One other strange thing to me is that he finished a 7 day course of steroids on Monday, and it's now Saturday and he's still eating like he's on steroids. In clinic, they said the effects can go on for a week after they stop taking the steroids. I'm a mess about this. When he's in maintenance is he going to be like this for 2 weeks out of every 4 - 5 days on the steroids and then another week of acting like he's on them? He's not himself at all, and the thought of doing this for another 3 years is exhausting.
I don't mean to sound like a witch, but we are exhausted, and I really don't know anyone who has been through this. We're right in the middle of delayed intensification, coming off a couple of really bad weeks, and I apologize if this sounds mean. I feel mean for getting so frustrated with the situation.
Jenn
- By Saraannesmom
- Posted October 18, 2009 at 10:44 am
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I am sorry that your son is having problems with constipation. And the way you feel is totally normal. It is very exhausting!
I have a daughter who was diagnosed with ALL this past January. She was 6 at the time, now she's 7. She didn't have any problems with constipation. I think from day one we had her on colace. She did develop diabetes after being on steroids during the induction therapy. That eventually went away but we watch what she eats. She was not herself and was very irritable when on steroids. After she received a cord blood transplant in May she had diarrhea for about 10 days but that was the graft vs host disease coming on. She was admitted back into the hospital since it was pretty bad. Sara's on steroids again but at a lower dosage to manage the rash she gets from the graft vs host disease. And her irritability is back too.
I understand your frustration and it's difficult to see our child in pain. I have to just take one day at a time and deal with issues as they come. Because for us, things changed all the time! Take care of yourself too!
- By jennm
- Posted October 28, 2009 at 12:24 pm
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You don't sound like a witch at all. It sounds like you have already realized you need to take care of yourself . Which means figuring how to handle things for your son. My son (ALL at 2 1/2 years) had a really hard time with the steroids on induction and consolidation. He stopped walking for 2 weeks due to joint pain. He couldn't even push himself up if he fell over when he was sitting. Never mind the constipation and diaper rash (we immedately stopped the potty training at diagnosis). I am the one who found after all the others Pear nectar worked the best to keep things moving along. He did not like juice either but I gave it in a syringe like the rest of the medicines and eventually he realized it made him feel better and would ask for it! They don't really realize anything but screaming and anger when they are on really heavy doses though.
As for the personality changes, you WILL get your son back. I rember when I was convinced he would never be the same again. The first mnth is SO long but it will wear off. Just hope for speed! I was so worked up about the consolidation... then when we started it seemed to end so much faster and with much less problems. I had learned to manage the constipation and then I knew the personality changes would pass so I knew what to expect.
As for the maintence (we finally finished after 3 years this past June) it is quite different. Sometimes he would be a little more angry and difficult than others.
but overall you learn to see the signs & learn how to head them off. Each month was a little different but not so bad that he couldn't go to preschool & kindergarten. Make sure you give the teacher the heads up & monthly reminders! We learned trigger points on maint. (example- don't say no to french fries / mac & cheese) he was always back to normal 3-4 days after finishing his 5 day pulse. Towards the end of the 3 years maint we even had the grocery shopping down for those days. As your son gets older & bIgger he will , as you will handle things differently. It is not the INTENSE drama you have now. You will all get little breathers inbetween pulses that will help you recharge. Try to not worry so much about the next few years. I found it was a waste of energy and quite frankly who knows what's around the corner in several years. Be glad your son has ALL and not something that does not have such a clear cut treatment plan. (I have talked myself through alot of melt downs remembering that).
Good luck, Things will get better!
Jennm
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