It's been one of those days today. Michaela had a headache last night that quickly turned into a migraine, which then lead to vomiting in the wee hours of the morning. I kept her home today since she would have just been too tired at school. I keep giving her laxative, but she's still smearing. We'll keep that going.
Maeve has been just fine, crabby, but regular. She never has any accidents. She never has any smears. She's never constipated. I love it.
Alasdair didn't have a bowel movement today, even though he's been on a laxative for the last 3 days or so. And the one little spot he did have was dark greenish. I'm going to keep an eye on that. Green = bad! Earlier today his diaper also exploded, so that was cool. It apparently happened up stairs in the kitchen, then he worked his way downstairs and Maeve laid down in some of the nasty gel on the floor. I found the trail with mounds dropped all over the place from the kitchen, through the living room, down the stairs, down the hallway and all over the carpet in the play room. Gross. Those things are damn near impossible to clean up. It's not as bad as washing one in the washing machine. I know from experience. Twice. Still a pain in the ass.
Let's hope this laxative starts kicking in soon and clears out my two. Luckily it's "dad's" weekend so i get a break from the poop!
Wednesday, October 6, 2010
Monday, October 4, 2010
Two On, One Off
Michaela and Alasdair are both back on the senna laxative for now. And it seems to be working. Things are moving right along. With any luck it will be just a couple of weeks and I can get them off of it. I hate having to use the laxative. I'm not sure why I have such an aversion to it as opposed to any other meds that the kids take for constipation, I just do.
Alasdair has had some pretty nasty diapers though. With all the fresh fruit he eats, then the laxative on top of it, they are just caustic. There aren't many things worse than trying to change your child's diaper or give them a bath while they are screaming in pain. And you HAVE to either wipe or soak to get them clean. And I'm sure it feels like I'm using sandpaper. I hate watching him waddle around because his thighs are raw and chaffed because of the extra full diapers and it hurts for him to walk. I hate that there is no "how to" manual for Hirschsprung's Disease once you come home post surgery. I feel like the success that families have comes with so much trial and error, and constant second guessing yourself. And once you do figure out what works for you, things change. It's a constant battle managing HD.
Some days Hirschsprung's Disease seems like the worst thing ever.
Alasdair has had some pretty nasty diapers though. With all the fresh fruit he eats, then the laxative on top of it, they are just caustic. There aren't many things worse than trying to change your child's diaper or give them a bath while they are screaming in pain. And you HAVE to either wipe or soak to get them clean. And I'm sure it feels like I'm using sandpaper. I hate watching him waddle around because his thighs are raw and chaffed because of the extra full diapers and it hurts for him to walk. I hate that there is no "how to" manual for Hirschsprung's Disease once you come home post surgery. I feel like the success that families have comes with so much trial and error, and constant second guessing yourself. And once you do figure out what works for you, things change. It's a constant battle managing HD.
Some days Hirschsprung's Disease seems like the worst thing ever.
Thursday, September 30, 2010
Free Diapers!!
Well, not for me. But maybe for you!
I learned that in some states if you have a child over 3 that has a medical reason for delayed potty training, it becomes classified as "incontinence", which then makes diapers a medical supply! My insurance doesn't cover it apparently. It's not in our "contract". But for others out there it might be something to look in to. Pass it on!
I started Alasdair on laxative last night. I'm hoping to get him back to a more regular bm schedule. Michaela continues to have tummy aches that are relieved by using the bathroom. I can't seem to get a laxative into her system so that it doesn't affect school or soccer. I'd hate for her to have it kick in on the field or in class or something. So she's still doing the miralax (or the Costco version of it), and i'm trying to increase that to see if it will help in the meantime.
I also ate the entire bag of Alasdair's bribe candy. I mean, you can NOT leave a bag, either open or unopen, in my house. I will find it and I will consume it. I'll have to get him his own bag of something less appealing to me and just keep the candy corns and candy corn pumpkins for myself!
mmmm, Halloweenie goodness.....
Monday, September 27, 2010
Learning Curve
Today my little ones had soccer practice. Afterwards Michaela tells me she thinks she's carsick, after a 10 minute car ride, that her tummy hurts. We get home and I slam out some dinner. She cleans her plate and then tells me that her tummy still hurts. She thinks it's because she ate dinner and then went up and down the stairs two times.
Michaela, that much exercise isn't going to make your tummy hurt.
Oh.
You probably need to poop.
Oh.
{brief interlude while she uses the facilities}
Mom! I pooped! A lot!
Does your tummy feel better?
YES!!!
See, when your tummy hurts, try to poop. You'll feel better, I promise!
Okay!
This is a conversation we have at least once a week, if not more. She's 8 1/2. You'd think that at some point she would realize that whatever "that feeling" is for her, it means she has to use the bathroom. But nope. I feel like somewhere along the way we forgot to let her touch the hot stove so she'd learn that hot = ouch.
Michaela, that much exercise isn't going to make your tummy hurt.
Oh.
You probably need to poop.
Oh.
{brief interlude while she uses the facilities}
Mom! I pooped! A lot!
Does your tummy feel better?
YES!!!
See, when your tummy hurts, try to poop. You'll feel better, I promise!
Okay!
This is a conversation we have at least once a week, if not more. She's 8 1/2. You'd think that at some point she would realize that whatever "that feeling" is for her, it means she has to use the bathroom. But nope. I feel like somewhere along the way we forgot to let her touch the hot stove so she'd learn that hot = ouch.
Saturday, September 25, 2010
Potty Training: The Final Frontier
For some reason I feel like potty training will be the last big hurdle in our adventures with Hirschsprung's. Although in my head I know differently. I have to. I'm a mom of an HD kid. For the rest of his life we'll be watching for signs of constipation, diarrhea, infection, malnutrition. It won't ever end. But I see that as a daily maintenance sort of thing. Potty Training. That's a huge deal! Not only for "normal" kids, but especially for HD kids. I just hope my kid can physically do it! I know he's ready to learn. But how frustrating is it going to be when we start worrying about having a bm in the potty and he just might not be able to? Based on our first feeble attempts, I'm not so sure we're going to have an easy road of it.
I bought a bag of candy corn pumpkins. You know, for bribery. We brought the potty chair downstairs near the toys and the TV. We're all set! He's 3 months past his 3rd birthday and now in preschool. And he's interested. He knows when he's peeing in his diaper. I've seen him hold it until the moment he gets into the bathtub, picks up the rinsing cup, points right in there and lets it go! yeah, he's ready.
The first couple of times were a huge success! He sat on the potty = 1 pumpkin. IF he pees on the potty = 2 pumpkins. If he POOPS on the potty = anything he wants, including a pony or a lifesize robot.
He actually got rewarded twice the first day for pooping on the potty with handful of pumpkins each time. But then i realized that he's not actually just having a bm. The stuff is literally just oozing out of him. I mean, I rewarded it anyway, but this is not good. It was very thin ribbons of poop too. I don't think that's normal. I've seen the size of the poops from his sisters and I know what these kids are capable of! And it's near imossible to see that from a diaper. But in the potty I could tell, and it makes me nervous.
For the past couple of weeks he has been having 6 - 8 dirty diapers a day, none of which are of any significant size. They stink to high hell, but they are probably just the results of the constant oozing. And then maybe once a day he'll empty out his entire body into one poor unsuspecting diaper. Good LORD.
When he gets back from his dad's this weekend, i'm going to put him back onto the dreaded laxative, stock up on Desitin and more vasaline in case we have to bust out the Ilex for a weepy rash, and see how that goes. If in a couple of weeks things aren't getting better, we may have to go in to see our surgeon. I'm concerned that he might have a stricture or something physical going on that's now allowing the stool to move through his colon and keep a normal shape/size.
Also, Michaela has been on a bowel clean out program since late July, meaning we put her on a laxative and double dose of miralax for 1 solid week (her bum was so red I actually had to use the diaper cream on HER!). Then after that week we have her on daily miralax. Things were going great until last week. Her tummy started hurting a lot, and i think she might be getting plugged up again. I really need to find a time we can get her back on a laxative for a few days as well, but between soccer and school, and knowing that the laxatives don't actually kick in for her until about 2 days in, I can't find a time to do it without putting her in danger of having an issue in the middle of class or at the soccer field.
The things we do for poop in this house! Geesh!
I bought a bag of candy corn pumpkins. You know, for bribery. We brought the potty chair downstairs near the toys and the TV. We're all set! He's 3 months past his 3rd birthday and now in preschool. And he's interested. He knows when he's peeing in his diaper. I've seen him hold it until the moment he gets into the bathtub, picks up the rinsing cup, points right in there and lets it go! yeah, he's ready.
The first couple of times were a huge success! He sat on the potty = 1 pumpkin. IF he pees on the potty = 2 pumpkins. If he POOPS on the potty = anything he wants, including a pony or a lifesize robot.
He actually got rewarded twice the first day for pooping on the potty with handful of pumpkins each time. But then i realized that he's not actually just having a bm. The stuff is literally just oozing out of him. I mean, I rewarded it anyway, but this is not good. It was very thin ribbons of poop too. I don't think that's normal. I've seen the size of the poops from his sisters and I know what these kids are capable of! And it's near imossible to see that from a diaper. But in the potty I could tell, and it makes me nervous.
For the past couple of weeks he has been having 6 - 8 dirty diapers a day, none of which are of any significant size. They stink to high hell, but they are probably just the results of the constant oozing. And then maybe once a day he'll empty out his entire body into one poor unsuspecting diaper. Good LORD.
When he gets back from his dad's this weekend, i'm going to put him back onto the dreaded laxative, stock up on Desitin and more vasaline in case we have to bust out the Ilex for a weepy rash, and see how that goes. If in a couple of weeks things aren't getting better, we may have to go in to see our surgeon. I'm concerned that he might have a stricture or something physical going on that's now allowing the stool to move through his colon and keep a normal shape/size.
Also, Michaela has been on a bowel clean out program since late July, meaning we put her on a laxative and double dose of miralax for 1 solid week (her bum was so red I actually had to use the diaper cream on HER!). Then after that week we have her on daily miralax. Things were going great until last week. Her tummy started hurting a lot, and i think she might be getting plugged up again. I really need to find a time we can get her back on a laxative for a few days as well, but between soccer and school, and knowing that the laxatives don't actually kick in for her until about 2 days in, I can't find a time to do it without putting her in danger of having an issue in the middle of class or at the soccer field.
The things we do for poop in this house! Geesh!
Thursday, April 8, 2010
Are things back to "normal"?
Doodie has actually had some "normal" looking bowel movements lately. Woo hoo! He's still going on his own, without laxatives, about once a day, sometimes more. If he does skip a day he makes up for it the next day. And not all of the movements are "normal" looking, but I think it's a good sign that some are.
His diet the last 5 days has consisted of Easter candy. I'm curious to see what happens when that's all gone! I think they have all three finally emptied out their baskets, so we'll be back to normal food soon.
It's probably time to go get him weighed again, too. If he still hasn't gained any weight since January, I think it will be time to find a new pediatrician and get him in for a talk about it.
Here's the best HD shirt EVAR! And on the cutest HD kid EVAR if I do say so myself. :D
Tuesday, March 30, 2010
Doodie Update
We've had Alasdair off of his senna laxative now for about 4 weeks. I've been really focused on keeping his diet super high in fiber and keeping his calorie/fat content up for some weight gain. So far, he's been having "regular" bms most of the time. Almost every day anyway, and sometimes 2 or 3 times a day. But their consistency is NOT normal. I guess as long as he's going that's a good thing.
I also had one of those "aha!" moments today. Doodie is a grazer. He's never been a champion eater at meal or snack time, which makes it tricky to keep his weight up (hence the high calorie/high fat diet to make every bite he DOES take count). There are times when he only takes 3 or 4 bites of his dinner and then leaves the table. Other times he won't even come to the table at all. And inevitably he complains about being hungry 15 minutes after the rest of us have finished and cleaned up. He does go and grab himself oranges or apples or pears out of the fruit drawer in the fridge and eats a lot of that throughout the day. So, I've started leaving his meals on the table.
This morning I offered him oatmeal made with half and half and flax, sliced plums, grapes and his meal replacement shake that he didn't drink last night. At first he ate the fruit and half his shake. Both he and Maeve asked for more fruit so I gave them more and he ate that, too. Then 30 minutes later he said he was hungry so i told him to go eat his oatmeal. And he did! and the rest of his shake, and the fruit that Maeve left on her plate!
He did this the other night at dinner and over the weekend at lunch. So I think for him I'm going to leave his meals sitting out so he can graze on them, assuming it's not something that's going to get completely gross in a couple of hours. And perhaps set out a snack bowl with some things that are easily accessible for him. Maybe just letting him graze all day long will ensure that he actually eats enough food and can gain some weight!
I also had one of those "aha!" moments today. Doodie is a grazer. He's never been a champion eater at meal or snack time, which makes it tricky to keep his weight up (hence the high calorie/high fat diet to make every bite he DOES take count). There are times when he only takes 3 or 4 bites of his dinner and then leaves the table. Other times he won't even come to the table at all. And inevitably he complains about being hungry 15 minutes after the rest of us have finished and cleaned up. He does go and grab himself oranges or apples or pears out of the fruit drawer in the fridge and eats a lot of that throughout the day. So, I've started leaving his meals on the table.
This morning I offered him oatmeal made with half and half and flax, sliced plums, grapes and his meal replacement shake that he didn't drink last night. At first he ate the fruit and half his shake. Both he and Maeve asked for more fruit so I gave them more and he ate that, too. Then 30 minutes later he said he was hungry so i told him to go eat his oatmeal. And he did! and the rest of his shake, and the fruit that Maeve left on her plate!
He did this the other night at dinner and over the weekend at lunch. So I think for him I'm going to leave his meals sitting out so he can graze on them, assuming it's not something that's going to get completely gross in a couple of hours. And perhaps set out a snack bowl with some things that are easily accessible for him. Maybe just letting him graze all day long will ensure that he actually eats enough food and can gain some weight!
Tuesday, February 23, 2010
HD is not fun.
After four days of no bowel movements and still on a full dose of laxative, I had to do something I've never done before: give a 2 year old an enema. Twice. It wasn't fun, but it wasn't hard either. Having read many times about poor mothers having to give their HD kids enemas, I was prepared for the worst. I had myself draped in a towel ready for some massive explosion of brown smelly goo. But I have to say it went much better than I expected.
First, he thought the enema bottle "tickled". Good grief.
Second, he wasn't bothered at all by the filling of his colon with cold liquid.
Third, there was no explosion as I removed the bottle.
Fourth, the look on his little face when he realized he was gonna go after he stood up was hilarious. (I was a little preoccupied so I didn't get a photo).
Once I realized he wasn't going to explode on me, we just put on a diaper and followed him around. After about 2 minutes we changed his diaper. Then maybe 5 minutes later we changed another one. Neither was overloaded or totally disgusting. And that was all he had. The next morning we did it again, with only one diaper resulting. Luckily after that he started going on his own, still on the laxative, of course.
This time we dodged the bullet of having to return to Children's Hospital for an "official" enema and x-rays and all kinds of other horrible things. (knock on wood)
First, he thought the enema bottle "tickled". Good grief.
Second, he wasn't bothered at all by the filling of his colon with cold liquid.
Third, there was no explosion as I removed the bottle.
Fourth, the look on his little face when he realized he was gonna go after he stood up was hilarious. (I was a little preoccupied so I didn't get a photo).
Once I realized he wasn't going to explode on me, we just put on a diaper and followed him around. After about 2 minutes we changed his diaper. Then maybe 5 minutes later we changed another one. Neither was overloaded or totally disgusting. And that was all he had. The next morning we did it again, with only one diaper resulting. Luckily after that he started going on his own, still on the laxative, of course.
This time we dodged the bullet of having to return to Children's Hospital for an "official" enema and x-rays and all kinds of other horrible things. (knock on wood)
Monday, February 1, 2010
Slow Motility
We've been giving Doodie the Little Tummies Laxative now for just over two weeks. He was having 2 - 3 bowel movements every day and I wasn't sure if that was good or bad. Did he really have that much in there to get rid of? Or was his food just passing through at a faster rate because of the laxative. I am admittedly NOT a laxative expert as some HD parents are. I know all about fiber, healthy high fat diets and diaper rash creams and remedies for weeping rash. I suppose now is the time I should learn about the wide world of senna.
I decided last Thursday to half the dose we had been giving him, hoping we could slowly wean him off of it and see if his constipation had been relieved. The nurse at Children's called last week to check on him and said that was a good plan. Just play with the dosage, but warned us that a lot of HD kids are on laxatives long term. I'm unsure about how that relates to us. I mean, he's been 100% constipation free for 2 1/2 years. It seems weird that just all of a sudden he would turn into a laxative dependant kid. The doc said physically he's fine as far as pull thru/scar tissue stuff goes. His diet hasn't changed. I don't know.
Anyway. We've been giving him half the dosage for about 4 days now. Today he didn't have any bowel movements at all. And last Friday on the second day of his reduced dose his dad told me he had a 4 pound diaper, all BM. Seriously? The kid only weighs 28 pounds!! I'm thinking in addition to our lifetime supply of Desitin that we keep on hand, we'll be adding the Little Tummies for at least the foreseeable future. I just hope this isn't a downward trend in his health. Keep your fingers and toes crossed!!
I decided last Thursday to half the dose we had been giving him, hoping we could slowly wean him off of it and see if his constipation had been relieved. The nurse at Children's called last week to check on him and said that was a good plan. Just play with the dosage, but warned us that a lot of HD kids are on laxatives long term. I'm unsure about how that relates to us. I mean, he's been 100% constipation free for 2 1/2 years. It seems weird that just all of a sudden he would turn into a laxative dependant kid. The doc said physically he's fine as far as pull thru/scar tissue stuff goes. His diet hasn't changed. I don't know.
Anyway. We've been giving him half the dosage for about 4 days now. Today he didn't have any bowel movements at all. And last Friday on the second day of his reduced dose his dad told me he had a 4 pound diaper, all BM. Seriously? The kid only weighs 28 pounds!! I'm thinking in addition to our lifetime supply of Desitin that we keep on hand, we'll be adding the Little Tummies for at least the foreseeable future. I just hope this isn't a downward trend in his health. Keep your fingers and toes crossed!!
Sunday, January 24, 2010
I think I'm back!
It's been a few months, and lots of things have changed in my life. I'm selling our house, moving, pulling my oldest out of Catholic school because we can't afford it, and getting divorced. After a few weeks to heal some and a great therapist and friends to cry with, I feel I can now continue down my little journey forged through the pooh. So, here are my updates on the kids!
Michaela: she still continues to have small accidents. We keep to a high fiber diet as a regular in our house, but otherwise, she's not on any Miralax, soy, probiotics or anything else anymore. None of it ever worked for her. But she doesn't seem to be constipated anymore. I think her "accidents" are from lack of paying attention at this point.
Maeve: she is completely 100% diaper free! Right after that last post in August, she never really looked back. She's had a handful of accidents, but she's not even 4 yet, so I can deal. She's much better that Michaela ever was at this age, so I'm thankful for that!!
Alasdair: he's a little more complicated. We see his surgeon every year in January for his check-ups post pull-thru surgery for his Hirschsprung's. Last January at 18 months old he finally hit 20 pounds, thanks to his high fat-high calorie diet. He was doing great! In June when he turned 2 he was 28 pounds! So we figured we could put him on the same diet everyone else is on in the house, like 2% milk instead of whole cut with half/half, eliminate the nutrition drink at night cut with half/half, cut down the butter and fats, etc. He continued to do well until about October. His bowel movements started to get erratic. He would not go for 1 - 2 days, then he'd go 2 or 3 times in one day, and they were huge blow-out poohs that stunk to high heaven. But he wasn't distended, he didn't have a fever, and his appetite hadn't changed, so I wasn't too worried about enterocolitis. This continued until last week when we saw our surgeon for our check up. He weighed in at 27 1/2 pounds. Uh. Yeah. While they were happy with is growth chart having gained 8 pounds in 1 year, I'm not so thrilled with the fact that he didn't gain anything at all in 6 months. I know that weight gain slows down as they get older, but it shouldn't stop altogether. So, he's back on the high fat-high calorie diet. And we were told to give him a senna laxative (Little Tummies). We give it to him once a day and it's definitely gotten things moving. So far he's had between 1 and 3 bms every day since we started giving it to him. And while they still smell fairly raunchy, they are returning to a more normal consistency (slowly) and a better color. So we'll continue with this until things get back to normal, keep him on his diet until his birthday in June, and hope that we will be able to take him off the senna soon. The prospect of having to use it long term is not an appealing one.
Michaela: she still continues to have small accidents. We keep to a high fiber diet as a regular in our house, but otherwise, she's not on any Miralax, soy, probiotics or anything else anymore. None of it ever worked for her. But she doesn't seem to be constipated anymore. I think her "accidents" are from lack of paying attention at this point.
Maeve: she is completely 100% diaper free! Right after that last post in August, she never really looked back. She's had a handful of accidents, but she's not even 4 yet, so I can deal. She's much better that Michaela ever was at this age, so I'm thankful for that!!
Alasdair: he's a little more complicated. We see his surgeon every year in January for his check-ups post pull-thru surgery for his Hirschsprung's. Last January at 18 months old he finally hit 20 pounds, thanks to his high fat-high calorie diet. He was doing great! In June when he turned 2 he was 28 pounds! So we figured we could put him on the same diet everyone else is on in the house, like 2% milk instead of whole cut with half/half, eliminate the nutrition drink at night cut with half/half, cut down the butter and fats, etc. He continued to do well until about October. His bowel movements started to get erratic. He would not go for 1 - 2 days, then he'd go 2 or 3 times in one day, and they were huge blow-out poohs that stunk to high heaven. But he wasn't distended, he didn't have a fever, and his appetite hadn't changed, so I wasn't too worried about enterocolitis. This continued until last week when we saw our surgeon for our check up. He weighed in at 27 1/2 pounds. Uh. Yeah. While they were happy with is growth chart having gained 8 pounds in 1 year, I'm not so thrilled with the fact that he didn't gain anything at all in 6 months. I know that weight gain slows down as they get older, but it shouldn't stop altogether. So, he's back on the high fat-high calorie diet. And we were told to give him a senna laxative (Little Tummies). We give it to him once a day and it's definitely gotten things moving. So far he's had between 1 and 3 bms every day since we started giving it to him. And while they still smell fairly raunchy, they are returning to a more normal consistency (slowly) and a better color. So we'll continue with this until things get back to normal, keep him on his diet until his birthday in June, and hope that we will be able to take him off the senna soon. The prospect of having to use it long term is not an appealing one.
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