Friday, August 31, 2012

Chronic Constipation Frustrations

Noel Swimming with Her Aqua Jogger

Since the day Noel was born, she has suffered from chronic constipation. As a baby a little prune juice in water would do the trick. When she progressed to baby food, a little jar of Gerber prunes was all she needed. Unfortunately, once she became a big girl eating all regular food, daily medication was needed to produce a bowel movement.

Miralax was the original drug of choice. For a long time it worked well, even though it was hard to get her to drink enough to get it all down. Eventually the Miralax began giving Noel stomach cramps. I switched to Kondremel. All this did was create an awful orange slim that would help slide the feces out.

The Kondremel no longer works for Noel and I am left frustrated at what to do. Suppositories used to work after 60 seconds, but now I have to use 3 and still wait a half hour to get the smallest result. This summer I have used enema's twice with the most recent one being Monday. It is Friday night and she hasn't had a bowel movement since I used the enema on Monday.

Being stuck home with shingles, I happen to remember that my grandmother had a laxative pill. It was tiny enough for Noel to swallow so I'm hoping that this works, although I must admit I don't hold out much hope. What's worse is that Noel's urine smells awful again, indicating a high possibility that she has another bacteria growing in her urine as a result of fecal impaction.

I recently read and article on MedlinePlus that stated those at risk for chronic constipation are those that "Have diseases of the brain or nervous system that damage the nerves that go to the muscles of the intestines." Angelman Syndrome is a neuro-genetic disorder so I have to wonder if Noel's brain just isn't telling it to have a bowel movement.

Constipation is definitely an issue among AS kids, as I see it being discussed frequently in Facebook groups. Once mom just admitted her daughter tonight at a hospital for fecal impaction.

I have to believe that the brain is the cause due to the fact that I've tried so many foods that are known for relieving constipation, as well as fiber supplements and prescription medications that are no longer working.

So what do I do? I have no clue, but I sure hope God shows me soon. I hate to see Noel suffer and have days where she won't play at all, won't eat, and won't drink. I hate to see her having to push so hard her whole face turns red and then having to rely on me to physically help remove the feces. How do you tell a brain to do its job?

Tuesday, July 10, 2012

Operation: Get Noel Ready for School

Noel at the Naval Air Station Museum in Wildwood

Today I had the pleasure of visiting the dentist (I'm being sarcastic). As I was watching the dentist prepare all of the tools she'd need to drill in my mouth for the next 20 minutes, I was reminded that the preparation isn't much different from my morning routine for Noel.

The dentist needed to have all of the tools at arms length so that she could just grab each instrument quickly. I have to do the same thing with Noel, or risk her running away before I'm finished getting her ready.

Here is how Operation: Get Noel Ready for School works.

1. Lay out Noel's outfit, which must include a matching hipperbib.

2. Lay out a diaper, wipes, and diaper cream if needed.

3. Set out the bucket of hair supplies.

4. Get the DAFOs (leg braces), special sneakers, and a pair of socks out.

5. Grab Noel and attempt to put all of these things on her without calling Anna down to help, which rarely happens.

6. Place Noel's seizure pills in a yogurt and get her to eat it, which isn't always easy considering she doesn't like to eat anything before 10 am. Sometimes I'll try to pour Kondremel (laxative) over the yogurt and get her to take that at the same time.

The operation continues with Anna babysitting Noel so that I can get her bookbag ready for school. This includes diapers, wipes, an extra outfit, a Sophie Smock for use when eating, her pressure vest, the communication folder, and her lunch box. The lunch box must have a breakfast and two lunches because she usually won't eat the breakfast.