Ayrie is using propranalol to treat his RRP and we are having pretty decent results. It’s exciting because it’s something we can do that doesn’t require being under general anesthesia!
We are giving him 2mg/kg/day. For Ayrie, who weighs 18 kg, this translates to 18kg or 4.5 mL at breakfast and dinner. Ayrie is using propranalol to treat his JORRP and at the time I am writing this (January 2010) I believe he and one other child are the only two people in the country using propranalol to treat JORRP. He has been using if for five months and we are seeing really promising results. Ian is the other boy using Propranalol here and you can see a photo of him below, and a link here that describes Ian’s experience with propranalol. There’s a mention of Ayrie in the article:
Rationale for using propranolol
- Hemangiomas are benign rapidly growing vascular tumors like papillomas, if propranolol works on hemangiomas it might also work on papillomas
- Propranolol is an established drug developed in the 1950s. In 1988 James Black was awarded the Nobel Prize in Medicinefor this discovery
- Propranolol is a non-selective beta blocker and has been used safely to treat hypertension, angina, essential tremor, migraines, anxiety and hyperthyroidism
- Propranolol has been used safely in kids at doses of 1 mg/kg/d to 4 mg/kg/day
Side effects
- The major potential side effects are low blood pressure, low blood sugar or asthma like symptoms
Benefits (Why I agreed to use it with Ayrie)
- The potential side effects are manageable and potentially less harmful than aggressive JORRP
- It’s easy for him to take (take with a glass of water at approximately the same time morning and night)
- It tastes good (or at least not bad)
Our experience after six weeks
- We are giving him 2mg/kg/day. For Ayrie, who weighs 18 kg, this translates to 18kg or 4.5 mL at breakfast and dinner.
- We have had his blood pressure monitored twice by the pediatrician and it was within the normal range for his age.
- He has had some wheezing and asthma like symptoms exacerbated by a cold that we are controlling with a nebulizer (have used 10 times in the last three weeks) and prednisolone (have used twice).
- At a six-week surgery, Ayrie had some bulky regrowth but none of it was on his true vocal chords. This was the best outcome that we have ever had.
Our experience after 18 weeks
- We are continuing giving him 2mg/kg/day. For Ayrie, who weighs 18 kg, this translates to 18kg or 4.5 mL at breakfast and dinner.
- His blood pressure has been taken many, many times over the last few weeks and it has not been low
- He has had three surgeries since starting propranalol, and both showed a slowing of papilloma re-growth
- The wheezing was not, in fact, caused by the propranalol but by an previously undiagnosed condition, tracheomalacia, which you can read about here.
Our experience after 25 weeks, 4/26/2010
- Ayrie was able to go 13 weeks between surgeries, as compared to his previous record of 8 weeks
- The amount of papilloma growth was much less than in all 19 previous surgeries
Overall, very positive!!
There is a propranalol clinical trial that I wrote about here.
