Our summer started off well enough--Elena was ready for the last day of school!
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| After bus surprise! |
Two days later she developed a cough. The same day, she had a well visit at her pediatrician. Overall her development is going well, she's on her regular growth curve. We've worked hard at getting Elena to gain weight (seen many nutritionists) and stay strong (lots of therapy and exercise). She is nicely on the 3rd percentile for age (8), height (44 inches), and weight (42 pounds) and a BMI score of 16.
Then she got sick.
Sick with some random virus, nothing too crazy--I know because I got it, and so did Vivian. Started with a cough and fever. Every time Elena gets a fever, we worry about slight dehydration--which inevitably leads to constipation. We give her lots of fluids (adding extra Miralax) and were ready to wait it out.
She started vomiting. I thought it might just be a stomach bug, as she felt a little better the next day. The next night, she started vomiting again. This has happened before. The last time this happened, again, it was after a short illness, and the nighttime vomiting continued for over a week (with some watery stool). Her pediatrician pieced together the puzzle-her bowel was mostly obstructed (only allowing liquid to pass). During the day, her general movement allowed some bowel movement, but when she went to bed for the night, her food and drink had no where to go--so she would get sick.
This time, we just couldn't get any liquid in her--she threw up everything, including sips of clear liquids. She did not have a fever. After close to 24 hours of this, I took her to the ER. I didn't think she was super sick--I figured it was a bowel obstruction, like before--but I assumed that someone in the ER could help her (if nothing else, administer IV fluids). They weighed her when we got in--she was 37 lbs.
Elena was given anti-nausea medication. It helped her not feel sick to her stomach--but didn't stop the vomiting (anything taken by mouth just didn't have anywhere to go!). IV fluids did perk her up a bit, and she was finally able to pass urine. She had a chest x-ray (b/c of her cough), which was clear. Her abdominal x-ray was very informative.
Elena's colon was impacted--with no visible air pockets--from the rectum to the splenic flexure. My guess is this is significant, but not serious.
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| Special Visitor: Dusty the Therapy Dog |
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| Another special visitor |
Since we couldn't get her to keep any laxative liquids down, she got enemas every two hours to try to remove the blockage. Two were administered at the hospital; they had no effect. Her doc and I agreed that we could do this at home--she'd probably be more comfortable, and possibly start to move around which could help her situation. I requested an IV bolus, and we headed home with her nausea meds and the plan to take steady liquids by mouth (with a laxative mixed in) and enemas every 2 hours until they were productive, as long as she was awake (sleeping took precedent over any of this).
Eight enemas later, they started being minimally productive. By this time, Elena could drink small amounts without the danger of vomiting. She could eat a little. She was moving surprisingly well, given her inactivity for the past week--being fatigued/immobile is horrible for a spastic cp kid, as inactivity makes tightness worse. I gave her lots of leg massages and we tried to play games in different sitting/laying positions.
After enema #12, she was out of patience. (Poor E!) She woke up the next morning and was able to pass very soft (hardly solid) stool, unprompted. Her doctor said to continue administering one enema/day (and continue her laxative) until large stools are passed (presumably responsible for the blockage). This is where we are today.
Obviously, I don't want to repeat this.
Elena eats a balanced diet. She loves veggies and fruits. She takes a daily dose of Miralax (and I'm not interested in conspiracy theories on if you think this stuff is bad--her life is worse without it, period). She has been on the same dosage of Miralax (2 tsp in the morning) since she was 8 months old.
My thoughts are 1) have her switch water/juice for milk (most of the time--that girl loves milk), 2) make sure she eats yogurt several times a week (top it with chia seeds or something like that, and introduce probiotic supplements?), and 3) give 2 teaspoons Miralax morning AND night. A friend also mentioned some sort of gut massage--where you gently massage (in a specific manner) to help move things along the colon.
Do you have ideas of what we can introduce to her diet? (I'm looking for proactive ideas here.) THANKS!
8 comments:
You can try the following:
-massaging the addomen going in circles round the navel, clockwise,until the area feels warm.
-replacing milk with mashed bananas mixed with sesame seeds.
- a fruit smoothie with chia seeds in the morning when Elena gets up(You should grind seeds before mixing them in)
Hope this helps!
PS:I'm an adult with CP and have solved my bowel issues thanks to what I listed above. I used to experience terrible constipation bouts when I was a child.
You can try the following:
-massaging the abdomen going in circles round the navel, clockwise,until the area feels warm.
-replacing milk with mashed bananas mixed with sesame seeds.
- a fruit smoothie with chia seeds in the morning when Elena gets up(You should grind seeds before mixing them in)
Hope this helps!
PS:I'm an adult with CP and have solved my bowel issues thanks to what I listed above. I used to experience terrible constipation bouts when I was a child.
I never had any issues like this but I know people with CP often do. Yogurt is great. Chia seeds are great too as long as you soak them first otherwise the suck water out of your body. Lots of water and fiber! If you could improve the alignment of her stomach muscles and tailbone that might help too. When I have good alignment it keeps things "moving"
AMY: I HAD A SIMAILAR SITUATUIN IN OCT 2012 AND IT'S TAKEN THIS LONG TO SORT IT OUT.. I WAS IN REALLY BAD PAIN AND I TOO THOUGHT IT WAS A STOMACH BUG.. SIX DAYS LATER I GO TO THE DOCTOR AND SHE SENDS ME FOR XRAYS AND SURE ENOUGH IT REVEALED I WAS CONSTIPATED...
I HAVE SINCE BEEN ON RESTROREALAX VERY SIMILAR TO THE ONE YOU MENTIONED IT'S A NATURAL WAY TO HELP THINGS OUT.. I WAS ALSO USING SENACOT EVERY THREE DAYS..
BOOSTING FIBRE WAS RECOMMED BUT I HAVE YET TO FIND SOMETHING I REALLY ENJOY.. THE ONLY ONE I HAVE BEEN EATING IS BRAN FLAKES AND I JUST ADD RAISINS TO IT.. I TOO LIKE MY VEGGIES AND FRUIT..
AS I TOO HAVE BEEN TOLD IT'S NOT JUST ABOUT DIET FOR THOSE OF US WITH CP IT'S THE MUSCLES NOT WORKING RIGHT THAT CAUSE THE PROBLEM..
ONE OTHER THING THAT WAS SUGGESTED IS TO TRAIN YOUR BODY WHRN YOU WANT TO GO AND THEN IT GETS TO KNOW AND YOU WILL GO AT A CERTAIN TIME.. IDEALLY, YOU SHOULD GO 40 MINS AFTER EATING..
YOU COULD ALSO TRY GROUND FLAX SEED QUINOA, IF SHE LIKES NUTS CHASHEWS ETC.. .
IT WILL TAKE A WHILE TO SORT IT OUT AND GET THINGS GOING AGAIN.. THEY CALL IT INCOMPLETE BOWEL MOVEMENTS MEANING YOU GO JUST NOT ENOUGH AND THEN IT JUST SITS THERE (WHICH IS NOT GOOD)
I HOPE THIS HELPS YOU
MELISSA
Metamucil every day? It works pretty well, tastes similar to Tang, and goes down easily if you drink it relatively quickly (if it sits it will thicken up and need to be stirred again). If you try it, though, get the name brand because the off brand is gritty, doesn't taste as good, and is harder to drink. Good luck! Sorry she had such a rough go of it.
My issues were completely solved- and I mean normal stools 1-2 times a day kind of solved- by counting the number of grams dietary of fibre I was intaking, and making sure that it hit the daily reccommended value for my age group / sex (25 g). By counting I realized that I was falling way short even though I thought I was eating a balanced diet.
This is hard work. And I don't keep up with it as well as I should. However, the success of it makes me believe that it was possible for me NOT to be constipated despite my CP.
We struggle with bowel issues as well. We have found that a daily dose of Prune Juice really makes a difference for our daughter. It means the difference in daily enemas to not having them. Sometimes we have to up the dosage of juice....but Sun*sweet PRUNE juice makes a huge difference for us.
Probiotics are a must for me
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