Hi Dr. Bradstreet!
We have an IV in Celebration this afternoon…not sure if you’re in today, but I wanted to update you on Noah’s progress since we began Spironolactone.
We started four weeks ago. This is what we have observed:
– Solid, normal poops! We have had quite a few dietary breaches in the past three weeks…he’s stealing food at school…but NO effect on poops.
– Noah has completely dropped his crazy, obsessive 20 minute bedtime routine. He has been going through the same routine with Doug for almost three years now. After one week on the Spironolactone, he began to leave out steps. After two weeks, it was completely gone and down to brush teeth and go to bed.
– Noah is getting to sleep faster. He has always slept through the night, but it usually took 1-2 hours for him to get to sleep. Now he’s out in about 30 minutes. So…better sleep with the Spironolactone.
– We have noticed positive social gains, improved eye contact and just an overall “with-it-ness”, for lack of a better description.
An FYI –
We had a terrible time getting the full dose in Noah in pill form. For the first few weeks, there was no way he was getting the full 50 mg (he was spitting it out). We switched to liquid form two weeks ago and he takes it all with no struggle. So…he’s really only been on 50 mg for two weeks now.
Big thumbs up from the Teels for Spironolactone!
We began using 25 mg. of Spironolactone in late July. Since then we’ve seen a remarkable change in our Colin. Within days of starting the Spironolactone we were able to reduce his Rx Colazal, which he’d taken for over 2 years, from 1125 mg daily to 375 mg. For the first time, we saw the symptoms of his colitis, gastritis, and esophagitis controlled. He did not hide or posture before having a bowel movement. He began living pain-free for the first time in years. Colin’s stomach, which stayed bloated and protruding pre-Spironolactone, became flat. His appetite increased. He actually ate a new food for the first time in months, maybe even years, without gagging. He even requested the food and tried it on his own. He is gaining weight again. His weight has very slowly increased in the last 4 years but it has significantly jumped with a weight gain of 2 lbs. in the past 4-6 weeks. All these amazing improvements in his overall well-being have resulted in marked progress behaviorally. His use of functional language has increased. His correct usage of pronouns has improved. His independence at school has been much improved. He’s never been happier and his progress has impressed everyone in contact with him. The teacher that oversees his special education services removed him from working in the resource room last week so that he could be in the regular 1st grade class with his “peer group”. His principal commented to one of his former ABA therapists that she was just “blown away” by Colin this year. There have been a couple of hiccups that are certainly the result of bacterial/yeast infections but as they are controlled, Colin is at his absolute best. I asked his special education teacher to share her thoughts on his progress this year (compared to his kindergarten year):
“Compared to last year, he is working more. He has to be prompted a great deal but he does get the work done. He is developing independence. He has been reluctant, but with firm and consistent prompting, he is turning in papers, getting out books, etc. on his own. He is communicating his need to go to the bathroom to all who work with him. That was not the case at all last year. While he does need lots of prompting, he responds appropriately. Last year, he had many days of simply repeating what the teacher was saying. This year, there has been very little of that. He has been doing his work in the regular classroom with the exception of reading. He has made monumental strides academically. It is possible that he had the knowledge last year. He could not, however, always communicate it to us. We are very encouraged by the progress we’ve seen. His attitude toward school has improved and his level of cooperation has greatly increased. He has not been absent nearly as much, either. He has a behavior plan in place whereby he earns computer time for finished (or good effort) work. He totally grasps this concept and it seems to be motivating him. We’re pleased with his progress so far.”