A.,
My daughter went through this exact thing, but she started about 14 months old. Your Dr. is right about Miralax. We used 17 grams (a capful) per day- AT THE SAME TIME of day, or at least during the same hour of each day.) At least now it is OTC. We had to go to a Pediatric GI Specialist. One more note- we took it once a day, you might be dosing her 2ce a day… so my details may differ from yours. So anyway, after much heartache on my part (and everyone who was near during her episodes) and a whole lot of pain on hers, and many failed attempts to wean her off of it- with her paying the ultimate price each time, I finally was successful. The Dr and the bottle says it is "non-addictive," but you and any other parent (and child) who are going/has been through it knows better. If it isn't addictive- then why do we need to wean off and do so much suffering? right? Anyway-that is not the issue.
The issue is how to overcome this horrible condition. I hope that all of the people who respond to your post read everyone elses the next day, instead of only those who had responded before them (because I will probably be one of your last responders- i had to write a word document throughout the day while I have been working. Sorry it is so long, but I hope to help others who don't know what to do because- "I have been there- and DONE that."
It is a complicated issue- and I am proud to say that my very brave and strong daughter and I have put this behind us after serveral years of trying various things to end the vicious cycles. Ther ehave been times we had to increase the dosage to get the result we so desperately seeked. I know you can relate.
I am here at Mamasource to educate others about this topic and Selective Mutism (because obvioulsy, it is what my daughter has suffered- and we have it all figured out- Thank GOD! We still thank God daily for bring us through it together! :))
So here are the details about our long journey with constipation and how to overcome it together with your child. I am not sure how long she has had this problem, so I cannot tell you exactly how to go about it, but I will just tell you how we did. Again, I had tried countless times to wean her off of the Miralax, went to several Drs, and had lots of horrible tests done to make sure that this was psychological rather than a medical problem. I followed each Drs. advice/recommendations on how to wean her too many times- so now it was time for me to give my logical way a try- and it is what worked.
If it is a new problem, let her stay on the Miralax for a while. A while- like several years, maybe. Miralax is absorbed through the body before it gets into the blood stream and it draws the fluids from within the body to help moisten the existing dry,hard,and BIG blockage of several days or weeks stool that has accumulated so that it can allow the loose stool behind it to pass, and then break up that large portion into passable amounts. My daughter was on it for a few years. I know that might sound horrible to someone who is not familiar with this grueling condition, but YOU know the degree of pain that your child suffers. It's like their head is literally being cut off. (I had to warn my neighbors 2 doors each way so they didn't call the police at the sounds they were hearing!!) Also, we as mothers (and fathers or other family members who love that child) endure so much pain watching our 'baby' go through this enormous nightmare, day after day, month after month- seeing the horror in our babies eyes....when it is coming....they anticipate it in the scariest of faces and noises...yet, we can not do a damn thing to soothe our baby....and that is the most difficult thing I have ever had to deal with as a parent- watching this as a single mom.... no control over this MONSTER controlling my BABIES body. Very emotional indeed. Even now. :'-( Certainly a cause for POST TRAUMATIC DISORDER, which my daughter suffers from because of this condition.
So Drs. say cut back the milligrams after being on it for 6 months (at least that is what I heard several years ago)- week after week, then day to day. And you probably already know- that equals starting all over again- time and time again- nothing accomplished. After years of research on my end, I decided to try a method that made sense to me, because the Drs. could in no way understand that their ideas weren't even close to successful for MY daughter. She was just another kid with a chart, and there obviously weren't any emotional strings to connect my daughter to her doctors, so not enough measure to comfort (or come up with a good way of resolving the issue) was taken in my opinion.
I had a plan.... I wrote out a chart, and planned for it to be a very gradual thing, that my daughter was not aware of (because part of it is mental). The key for us was to add mineral oil (you can buy it at any store, in the isle for laxatives) to her drinks a couple times a day. I think it was a tablespoon or two. If she wanted strawberry milk, I would give it to her- and a small amount (3-4 ounces) so she would drink it quick. There is some adjustment to it, but tell her that it will make her issue go away- in whatever terms you want to communicate that to her. Make sure you shake it up every couple of minutes, and have her down it as quickly as possible. It is more effective if it isn’t a drawn out hour long process for one dosage. We did one in the am, and one in the pm.
Also, you will want to purchase Benefiber. Also over-the-counter and sold everywhere. It is a terrific product, that- like Miralax- it also dissolves into nothing- odorless, tasteless, and undetected. So figure out how much more fiber your child needs to really keep the BMs healthy, and keep that added into the mix, for a couple of months after the Miralax AND mineral oil are out of the picture.
I then began to drop mgs of the Miralax, 2 mgs per week, (always during the same hour of the day) then once you get down to one third of what she is at now, or somewhere between 5-10 mgs per day, start REALLY paying attention to the time that you give it to her. Here is where it gets tricky. Don’t go down daily any longer- at least not the same way. Now you have to give it to her (for example- normally she drinks the Miralax at 11am) an hour later- and the same dosage, dropping approximate one gram every 3 days. Of course you have to measure it by eye. So what I am saying is let the hours in between start to increase. Day 2 of this phase, give her the Miralax at 12 noon (the shortened amount for 3 days of each approx. measurement). The third day- dose her at 1pm. The forth day- approx 2 mgs less, and another hour later- so at 2 pm. Keep it up on that schedule.
Remember to give her the mineral oil, and to find the amount that works and keeps your child comfortable. Do not reduce the mineral oil until you have been off of the Miralax for a good month. I assume that your child is toilet trained- so you may not know every time she goes to the bathroom, and what the results were- so make sure you ask her daily. I had my daughter NOT flush her BMs so I could keep in mind about what she had in her system, and what she was holding back. Soon you will know exactly what to expect out of her daily (if you don’t already know).
Also- I found it best not to let my daughter in on any details of amounts- or that we were going down and weaning for that matter. Because it is probable that it is a psychological issue to begin with, it’s best that she know as little as possible.
Even when you are off the Miralax, allow her to think she is still having it. Watch over her as you normally do- encouraging her to drink it up. Same with the oil. Continue to shake it like you did when it had plenty of oil. So do it as you reduce the oil. Coming off of the oil is much easier. But do it in a similar way, reducing the times a day to once, then come down slowly- by hours and amount- not days.
Things are coming to mind as I sort of relive the experience is- how I HAD to be in the bathroom with her- and really coach and cheer her on, constantly reassuring her that she could do it. And most of those times, I HAD to hold her in a position, that would not allow her to hold it in. I had to sort of hug her while kneeling in front of her, and force her knees to be up at her chest (like she is squatting). She would fight me as much as she could- but eventually- whatever could come out –did.
Even know- when she struggles, she will squat on the toilet seat (feet on- butt down). Her grandma taught her that sometimes when the BM is too big, and it hurts, that she can press around the area, and that will help the skin pull back and around it, so that area stretches better and less bleeding. That technique has really been a huge help along the way- and still it really helps my daughter these days.
I am not sure if the long-term effects of this very intense problem will taunt my daughter forever- but it sure seems to be. She is 8 now, and she has been off of all laxatives completely for a few years. She still begs for me to come with her to the bathroom sometimes because she is afraid. But as long as she has a regular BM each day, and we keep a high fiber diet, she does do very well. I still ask her if she’s went and when etc… I believe it will traumatize her on some level for a very long time.
I hope you have gotten some good advice from my very long “2 cents” on this very difficult-to-bear- subject.
Please feel free to email me anytime if you have any questions at all. Anyone else is free to contact me on the subject….that is why I am here!
I will be praying for you and your daughter to get through this as best as possible.
A.