Friday, September 21, 2012

If you have a child with encopresis, you'll be hanging on to every word.

If you don't, then this will sound like one long babble of poop talk to you.  Those of you who know what i mean, you know what i mean.  Ahhhh, an update on Ian.  Like everything else i've been wanting to do this for a long time, but like everything else, it's time consuming and i seem to have less and less of that every day.  A couple people have asked me if the Soiling Solutions program is really all that it's cracked up to be, since there is so little to be said of it on the internet and most pediatricians seem to be out of the loop as well..... so here we go.  I found an email i had written to the SS forum (an invaluable part of the program) back in January of this year.  We were only a month into it (and had just weaned completely off miralax and still quite clueless as to what we were doing.  This is what i wrote-  

Self-diagnosed my son with encopresis early November.  He just turned 3 in October and we are at a loss as to when this began for him since he was just leaving potty training age, but are guessing it had to have started with the issue sometime after our third son was born last January 2011, but nothing seemed out of the ordinary until he was in regular underwear and was completely competent with peeing on the toilet but still pooping in his undies.  The week before Thanksgiving, we saw the dr. who ordered blood work, when all that came back okay three days later, we had an x-ray done, which showed lots of backed up poo, lots of gas.  Dr. ordered clean-out - 1 capful of Miralax 2x day for three days, plus Dulcolax suppositories 1x day for three days, then drop Miralax dosage down to one capful daily.  Cleanout produced tons of poop, he even pooped on his own the day after (why is that anyway?), but by the next day he had an accident again.  Called the advice nurse a few days later specifically to get an enema bag "recipe" appropriate for a 3yr. old because he was obviously still backed up and i didn't want to see him go through with this for another day longer.  She wouldn't give me an answer to that but said she would check with the dr. to see if he wanted to up his dosage of Miralax or do more suppositories.  And i said again, can you please ask him specifically about the enema, that's what i'm calling for.  Doctor calls back a few hours later and starts going on about upping his dosage of Miralax to three capfuls a day, which i wasn't comfortable with so he dropped it down to two capfuls until we get to the point of loose watery stools, and that that might just have to be his "maintenance therapy" for a while.  I almost laughed on the phone because i remember that term being used in the manual.  He said we'd see where my son was at in six months.  I again had to bring up that i wanted to do an enema on my son, how should i go about doing that?  He said that i could buy the commercial pediatric brands, and when i asked why drs. don't recommend them now, he said that one can become dependent on them.  When i asked again about what to prepare for a bag enema, he basically said, oh you don't really want to mess with those.  Ummm, yeah, i do, or i wouldn't have already bought one.  I thanked him for his input and hung up knowing i obviously wasn't going to get the help i needed from him.  I had a follow-up appt. scheduled a few days later, which i canceled because i knew it would be a waste of my time and money.  At my son's initial appt. a couple weeks prior, i kinda played dumb and casually asked if he had ever heard of soiling solutions, which he hadn't.  I had actually already ordered my copy already and was waiting for it to come in the mail.  That's also when i first brought up the possibility of an enema, which he described as more "invasive".

So anyway, we started the protocol(if you could even call it that, the first night was HORRIBLE) a couple days later on 12/1.  This was exactly a week after ending the clean out.  The soiling stopped within three days and the depressing homebound-ness that controlled us was gone at last!  Then i was worried that because the protocol didn't get started immediately after his clean out(which i'm not even sure if he was done being cleaned out or not) and read from a mom that they finally realized after years( i think i read it right) of doing the protocol, finally figuring out that her daughter still had a blockage that never gotten taken care of.  So that's been on my mind, wondering if i should start all over again just to be sure and do a more aggressive clean out.  Then i started reading more about enemas, and everywhere i look i seem to keep reading that's it not good to do them on a daily basis for an extended period of time.  I had switched a couple weeks ago from the adult fleet enemas to the bag because i was concerned about the higher concentrated saline solution, now i'm concerned that maybe the bag enema, although it gets much more water in, i have no way of telling how much poop is actually being expelled because there is so much water gushing out.  I've really been curious to know, have many of you out there actually been doing bag enemas every day for months?  He's only had two accidents since the soiling stopped, one was a few weeks ago, and the most recent was one week ago.  Do accidents definitely always mean that they are backed up again?  I had been weaning him off Miralax but the day before his accident i had bumped it back up from 1/4 tea. to 1/2 teaspoon.  Would that even make a difference?

Mostly, the thing weighing on me was wondering if he was backed up at all, and my frustration was at a peak a couple nights ago.  I felt like i still had no idea if i was doing the right thing or not.  My son at this point is not even bothered by the suppositories or enemas, i have him lay over my legs and he gets to play with my phone while i'm inserting, and most days i feel like i'm almost training him to need these aids to go because he's starting to think this is the norm for pooping.  Do any of you out there have really young children that have successfully been freed from encopresis completely?  I NEED to hear from you.  I guess my fear got the best of me, wondering if he was EVER going to have the ability to go on his own, and the bag enemas becoming so time consuming to get all the water in then wait for it all to come out.  The no soiling during the day has been amazing yes, but i was still exhausted by the whole process every night.  And the worst thing is that NOBODY understands.  Except everyone on here of course.  You guys are real out there right? :-)  I was venting to my husband about all this, and he somehow convinced me to lay off for a couple days and see if our son could go on his own after enough poop formed.  He had a theory which i can't remember now, but anyway, the first day off the protocol he actually pooped a decent amount, but it was hours after we had given him a suppository in the morning because he looked like he was holding.  Then that evening he had two diarrhea-like accidents, which i didn't get to see because my husband cleaned them out.  And today has produced nothing but gas.  We'll see what tomorrow brings, but if anything will show my husband just how important the protocol is.  He hasn't read the manual yet, and believes that if
a child can be holding their bottom and squirming because they are trying to keep poop in then their colon must be back down to regular size because they can feel the sensations of the poop wanting to come out.  I have a hard time wrapping my head around this as well so if anyone has a good explanation i'd love to hear it!  My mom's actually borrowing the manual right now (talk about grandma of the year!) so i can't check in there.

So i guess in a way this solves my issue of wondering if he's backed up or not, because if he wasn't before, then he for sure will be now!  So as much i hate the clean out  phase, i think that's my next step.  I'm not too thrilled about trying Miralax again, it made my son's urine cloudy the whole time he was on it and he had darker than usual circles under his eyes.  Will probably do Dulcolax supps again but would love any input on a strong but safe oral alternative.  Also, how do we know when a clean-out is complete?  Okay, i'm done for now, i've written way too much.  But i'll probably ask more later as it comes to me.  Thank you to everyone who actually makes it through this whole email, ANY input is soooooo appreciated!

Ian's mom Michele;O


Here we are 9 1/2 months later and my son is not what i would call "cured".  But when i look back on where we came from and being reminded from several of the SS moms that the healing process goes in phases, i have absolutely no regrets in the course of action we've taken.  I am 100% sure that if we had not purchased the Soiling Solutions kit then our son would still be having poop in his underwear to this day.  We went from basically being homebound because i was cleaning his underwear out so much to being able to have a social life again without fear of that certain smell that only belongs to children with this condition.  We don't do the full "power hour" anymore, not exactly sure when we stopped, but as he began to be able to go on his own without assistance more often, we started to develop a more relaxed routine.  We still use suppositories when needed but for the most part things are pretty good.  There was a time earlier this summer when he went to the bathroom unassisted for about two weeks, i'm still trying to figure out what the magic was that caused that to happen.  One thing i've learned over this past year about encopresis is this.  It doesn't discriminate. And is definitely a medical condition.  From the countless accounts on the SS forum including myself who has three children, kids that have this come from a variety of backgrounds.  Have parents that are married, divorced, remarried.  Some are an only child, some are twins both with the condition other times only one will have it.  First born, middle child, the youngest or anywhere in between.  Strong-willed or easy breezy like my second born.  Early potty training or late, there is not one common denominator in any family situation that i have seen .  Yet many parents are hanging on to the blame, trying to figure out something they could have done differently to prevent this.  Here's my take and i'm pretty sure it's accurate.  There's no way to prevent it.  It's so rare (around 3%, but could be a lot higher on the fact that it's an uncomfortable thing to discuss so parents just live with it not reporting it to their doctors) and i think if your child's gonna get it, he or she is going to have it period.  
I would most definitely recommend purchasing Soiling Solutions, but you have to be prepared for some things.  First of all, it's going to suck.  I wish there was an easier way to say it, but giving an enema for the first time is usually awful for everyone, and not all that successful.  Everything about this program is one day at a time.  Second, it will make or break you depending on whether or not your spouse is on the same page.  My husband has been nothing but encouraging to me throughout this whole thing, he trusts me with our son, and truthfully i know he knows he's happy that he's not in charge of it! :-)  But it can be done even if they're not on board.  Many parents have had to go through with this while their own spouse or ex is accusing them of hurting the child, but they do it anyway knowing it needs to be done.  Thirdly, you have to be willing to carve out that hour a day, which in the beginning is longer than that, and give up certain plans and/or turn down social events depending on what time of day you decide to do  the 'power hour'.  Fourthly, be ready for some really bad days.  This has been emotionally, physically, mentally draining.  There were many days where it was all my mind could think about.  When there's no clear cut answer or cure, when everything is trial and error, a mother's mind will never stop until the puzzle is solved and her child is well again.  I was always analyzing his diet, beverage intake, watching his behavior, taking in every bit of info every time a parent would write on the email forum, which was multiple times a day.  Who ever thinks they're going to be at a place in their life when they're actually taking pictures of poop?  Better yet, what says romance more than a husband texting a picture of poop to his wife?  With an enthusiastic message to boot.  Whoever said your life would never be the same after children, they weren't kidding.  I've had many a meltdowns during this whole process, lots of tears, lots of fears.  But i'm thankful to be where we are now, i'm still learning, still adjusting here and there.  Still trial and error-ing.  I'm still hanging on to the promises God gave me, little signs given in the beginning that told me this was the right way to go and that Ian would be alright.  Trusting God was the only thing i could do on days when it seemed like no progress was being made.  I truly believe that some day Ian will be initiating bowel movements 100% of the time in the future, but until then we'll just keep on keeping on.  My little guy turns only 4 years old next month, I feel for the poor children who are already in elementary school that are having to endure this.  I would encourage anyone reading this who has a child with encopresis to not wait another day.  Even if it takes years for your child's insides to fully heal from being backed up for however long, they can have their dignity back among their peers by not reeking of poop all day.  I can't even imagine.  Having an older child might prove to be more difficult upfront because of the invasiveness of treatment, but they will be able to recognize much more quickly the benefit it gives them the other 23 hours of the day.  For those worried that suppositories and/or enemas are traumatic for the child, please believe me when i say they're not.  They might be traumatic for the parent though! :-) Yes the first few days were clumsy and he didn't want me to do it, but it's amazing how fast children can adapt, and he very quickly saw that it wasn't scary or painful but actually gave him relief, and treats!  Now please parents, if you're still reading this, go rescue your children.


8 comments:

  1. Thank you for this update!!! Been wanting to ask for months! Been praying for almost a year for you and poor baby Ian, so glad to hear things are better and some of the time even 'good'. I feel so blessed that my sweet nephews have a strong mommy that take the necessary and sometime scary (and for sure gross) steps to make their lives better. You as always win 'mom of the year'...again!!!

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  2. I was hanging onto every word:] This really gives me a window into your world and oh what a painful time of endurance and love you displayed. Even being honest about your times of weakness and doubt - that is key.

    You are a VERY VERY good mom...and thank God that He chose you for Ian. No one could have healed him or loved him through it better - NO ONE! I believe that moms do know best despite what our society is telling us and we need to listen to our gut and learn how to tell others who discourage us to back off. There is no time for discouraging when a mom is struggling to care for her child the only way she knows how.

    This looks like e-book material to me:]

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  3. This is great to hear. I am just not learning about SS and think it might help us with the year-long battler we've had with stool withholding. I have been looking for reviews of the program online and haven't found much, so this really helps. Thank you!

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  4. Thanks for your review! I am going between the DoctorDaum method (top-down) or Soiling Solutions (bottom-up) for my 7 year old's withholding issues. He has cognitive impairment, which makes me lean toward the SS. Tired of hearing Miralax as the only solution.

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  5. My son has encropsis but this manual is so outrageously priced, very few could afford it. I'm doing my best to manage this but wish this program was actually affordable for more people.

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  6. My son has encropsis but this manual is so outrageously priced, very few could afford it. I'm doing my best to manage this but wish this program was actually affordable for more people.

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  7. My 4 year old daughter has horrible encopresis and withholding. We have been unsuccessful at getting her out of diapers because she soils so badly. I feel so sorry for her because within 19 minutes of changing her diaper, she's already starting to have "that smell" about her that you described. We've done the exlax and miralax combo a deposit it has just made it worse. Would love to get this program and give it a try.

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  8. Miralax made my daughter have constant diarrhea. She would take all day to take her dose. We now do mineral oil mixed with chocolate syrup. Can do up to 5 tablespoons per day as needed. We also do enemas as needed. My daughter is 5.

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