December 11, 2015


So, Azer has been on Reglan for almost a month now. It has worked beautifully. His constant constipation has gone away. For nearly the first time in his life, he has been able to eat what he wants, when he wants. He has no bloating, reflux, or feelings of fullness. All symptoms of gastroparesis have gone.

At last clinic, we decided since it was working so well, they would fax in a month's long prescription to the pharmacy.

Unknown to me all this time, it is a black box drug. In other words, potential bad side effects. The nurse called me to tell me about a potential side effect called Tardive Dyskinesia. This is basically a condition that could permanently affect the nervous system, and can cause involuntary movements of voluntary muscles. I read on a CF website about someone's daughter who had severe facial twitches after being on Reglan. This terrifies me and sorrows me at the same time. I have stopped the Reglan immediately. The possibility of him developing TD is around 15-20%. I stopped Reglan last night, and his bloating, reflux, feeling of fullness came back immediately, as did diarrhea for some reason.

I called the pharmacy to cancel the prescription. I was able to talk to our GI doctor, and we are going to try another medication over the weekend. It is an antibiotic, but can treat gastroparesis as well. We have tried it in the past, and it resulted in him constantly vomiting. I really hope this does not happen this time.

This whole thing has been very upsetting to me. I mean, I was so happy for him that he was able to eat normally, and feel what enjoying food feels like! But at the same time, absolutely terrified that he took this medication that could have had disastrous side effects. I thank God that this did not happen, but I feel like I should have been warned about the potential side effects BEFORE he took the medication for the first time.

December 2, 2015

Clinic Day

About two weeks ago, Azer was stilling having reflux issues, so the GI doctor decided to switch him from bethanechol to reglan which can be used to treat gastroparesis. While it hasn't made the reflux/vomiting completely go away, it has helped significantly. Currently, he has only been having food come up if he is running or playing aggressively. The GI doctor said there is little they can do about that, because most of what is in his stomach is usually just formula, and it is easier for liquid to come up than solid food.

So, yesterday, both the GI and Pulmonary doctors were very pleased. He is now 95 lbs, which puts him around 60th percentile for weight. The ideal weight for a CF person is 50%, so we are doing fantastic. On the growth chart, it looks like a straight line up.  His height is finally starting to creep higher above the 10th percentile. It is moving slowly in the right direction. When the pulmonary doctor came in, she said that the GI doctor was grinning out in the hallway. His weight is high enough now to have to move up to a higher strength of enzymes and he hasn't seemed to have as much constipation since we started the Reglan.

His Fev1 was only 83%. However, the doctor said they now have a new computer system they use for PFT's. She showed us based on the volume of air he blew out, that his total volume is increased compared to last time. She believes his Fev1 was actually in the 90's because of this. I was grateful for her taking the time to explain and compare the test. She listened to his lungs and she said he had great airflow and no wheezing at all. She mentioned that the pushing technique I do after CPT helps clear the mucus out of the smaller airways, so on we must continue!