January 30, 2010

Laxatives, Irrigations, and Probiotics --Oh my

Anyone that knows anything about Hirschsprungs Disease can tell you the facts. The first fact is that every child with this disorder requires an operation to remove the part of the colon that does not work properly, leaving the child with a shorter than normal colon. Since Dylan has had 3 operations, the first 2 operations in the first year of his life, his colon is rather short. He approximately has a third of his colon left. This causes him to have diareaha like bowel movements because the large intestine is responsible for absorbing the water and turning stool into a solid form. As of lately his bowel movements have slowed down. My last post was about a possible partial obstruction caused by his slower than normal motility and my mistake of giving him popcorn.

After trying an irrigation and Dylan vomitting once, he began to feel a bit better, but his bowel movements still were not normal. He wasnt passing enough on his own to fully empty which causes him to get sick and backed up. I contacted the nurse that handles Dylan's case at Cincinnati, filled her in on what was going on, and asked for her opinion of trying a laxative. With the confirmation that it would be safe, we tried exlax. We were told to try 1 square, if he didnt empty on his own within 24 hours to try an irrigation and then up the dose to 2 squares. Dylan is one of those children who goes into fits at just the sight of a medicine bottle, so luckily I hid the package that the exlax came in, and handed him a chocolate square. Much to my surprise he gobbled it down and wanted more!!!!!!!.....The exlax did work, slowly he began emptying a bit at a time, 24 hours later though, he still wasnt emptying like he should, so I did another irrigation. During this time he lost 2 pounds, which shows that his colon was with holding alot of stool. The exlax caused him to have a nasty rash on his bottom that bled, so we have since stopped giving him that.

But I am now doing irrigation ever few days, just to help his colon empty. We have also tried some probiotics. Probiotics will help put some "healthy" bacteria in the colon. So yet again we are back to trial and error trying to figure out this puzzle....Will we ever figure it out? Will Dylan ever be well enough to just be able to live a normal life without irrigations, or medicines? I guess that all depends on the results of the trial and error methods we try. Until then, we have hit the "motility" road block and are not sure what to do.

January 25, 2010

Popcorn is officially a "No, No" in our house

So recently Dylan has gained some weight, looking healthy, and I actually thought that just maybe his Hirschsprungs Journey was getting a bit easier, or "outgrowing" the major issues, as some HD kids do. Little did I know that most likely instead of healthy weight gain, we were looking at a bloated belly due to slower motility, meaning his bowel movements were slowing down. Dylan has always been a picky eater, does not try too many new foods, and sticks to stuff that he knows he likes. Hes never been a "healthy" eater, and I've never forced him to any one certain type of diet. There are some foods that affect him different ways, some give him diarreaha, for example if he has too much sugar in his diet. BUT, on the other hand, we are now realizing there are certain foods that he cannot have. The one thing Dylan use to absolutely love was popcorn. Believe it or not popcorn is officially a "No, No" in our house now because it causes Dyaln to completely block up. I had once suspected this a while back, but was told by a doctor that popcorn is good for kids, and a great source of fiber, and fiber is suppose to help "bulk" the stool. However, this is not the case for Dylan. He had popcorn Friday evening, starting Saturday his motility started to change, barely having a bowel movement, feeling like he needed to go but couldn't. If he did go, there wasnt much. So by Sunday, he was blocked up quite a bit, didnt eat much for breakfast (and thats some of his favorite types of foods) so I knew it was possible he wasnt feeling well. Him and I went to the store, he loves to shop, but he was very quiet on the trip there and back, when we got home he went to the couch and begin to lay around which was when I knew what was coming next. He slept a few hours, and he usually rarely naps...Sure enough his temperature went up a bit and I debated on whether to start rectal irrigations in hopes of getting ahead of the problem before it started or got worse. The irrigation wasnt an absolute success but it did help a little. Dylan did start feeling better and wanted to get up and try to play, but as soon as he did he vomitted a few times, and then was back on the couch for the rest of the evening. He did wake up fine though, and seems to be doing well, is eating again, and is having some bowel movements. So looks as things are "moving along" now and hopefully returning to normal. This goes to show that these kids are more than likely going to have issues for the rest of their lives. Probably not serious issues, and things will most likely get better as they get older, but as every other HD mother has said..."its all trial and error"...When you find foods that affect their motility in a negative way, then you make a "NO, NO" list and know they cant have it...And for Dylan this list now includes popcorn, which was always one of this favorite snacks. But another important note is to know the signs and symptoms of knowing when a blockage or obstruction is forming and get a step ahead of the problem before it gets too bad. This time I knew to react quickly and it only lasted a day, the last time he did this it lasted a week and he ended up in the hospital. Thankfully this was a short episode, which can be prevented from now on from just avoiding popcorn. So my lesson this week is, Short colon + slower motility + popcorn = a "No, No". This may not be the case for all HD kids, I have had some HD moms tell me that popcorn has no affect on their kids, but other foods do, so it is different with each child, and of course each childs HD case is never the same, noones colon is exactly the same, things affect people in different ways. The moral to the story is monitor foods and their affect on motility. I know I have learned some valuable lessons from doing so lately.

January 15, 2010

Night Time Tummy Troubles

I know I have said time and time again, that I am blessed that Dylan is well and healthy, things could always be worse (and thank god they arent). But I must know, when will these kids every get a break? Im sure the other Hirschsprungs families can relate to that question.

Dylan woke up at 3 am this morning, his stomach rumbling, crying that he needed a diaper, his words were "I poopied Mommy, change my diaper"....But there was nothing there. He continued this for an hour, I kept trying to massage his belly, put his body in positions that would help relieve gas if that was the problem, while I rubbed his back. Nothing seemed to help. It really breaks a mothers heart for her child to be complaining of pain and discomfort, and yet theres nothing she can do to help. Hugs and love is all a mom can do at times like this....My poor little guy finally went back to sleep, and woke up this morning fine. So it is a good possibility that it could have been gas (air) build up that was causing him such pain. He hasnt had any bowel movements today, and after last night that makes me wonder if an obstruction is starting but you know what....I worry too to much......So hopefully its nothing and today things will return to normal. On days like this is does help to keep a positive attitude and be optimistic. If not the worries and struggling would drive you crazy other wise.

January 12, 2010

Jan 2010 ~1 year anniversary of Dylan's second Pull-thru surgery

Christmas is over, the new year has begun. January 6, 2010 marked a special time for us.....a new year, and Dylan's official 1 year post operative anniversary. Though its been one long road, and the battle is clearly not over, last year was a blessed year. Dylan has been doing ok, hasnt been sick that often like he had been at one time. We have attempted potty training, or well I should say I have, but Dylan is just stubborn and really doesnt even want to try. As of now, hes still in diapers, well if you count the 1 hour of a day that he will keep one on anyways. Hes in that stage to where he is always wanting to pull his diaper off, and when he does this I take him straight to the potty and tell him if he doesnt want to wear a diaper that he needs to try to use the toilet. Of course, when I take him there and make him sit there against his own will, he gets mad and doesnt like it. The only thing is, if I leave it up to him to do it, he wants to sit there with his diaper or underwear on. So we are having absolutely no luck with toilet training. I knew it would be a difficult task, but its turned out harder than I amagined just because Dylan does not want to do it. I still plan on using this oppurtunity to my advatage though, if hes going to take his diaper off a dozen times a day, then hes going to sit on the potty each time. With this hopefully he will begin to realize what he needs to do if he doesnt want to wear a diaper.

Dylan's hirschsprungs journey has never been easy, although we are lucky it has went as well as it has. Theres so many kids out there that struggle alot worse, so I am more than thankful that God has let us have "the easy road" compared to some. I cant complain, we will just work at it until we get it. Dylans 4th birthday is coming up, and I cannot believe how time flies. My little boy is turning into a big boy and will soon start preschool which will be a whole new chapter, and hopefully we can get him potty trained by then, and if not then, well we will pray that he ends up with an understanding teacher that has a big heart. So, to the rest of you Hirschsprungs mommies out there...stay strong, and take it one day at a time...Things will slowly look up, when things seem hard, just remember, things could be worse, we still have our precious children after all, some havent been so blessed. So always count your blessings...the few, the better, just be thankful.