Disopyramide

[ottersonclan]

My question is regarding the drug called disopyramide.

My 23 month old baby has HCMA and his gradient last week, according to the echocardiogram, was 85.......3 months ago it was 65......previously it use to hover around 45. Since birth he has been on propranalol (Inderol) and has always been at the maximum dosage for his weight. My Doctor mentioned there has been some success with the drug called disopyramide and my baby will be on this for two weeks and then we will do a follow-up echo to determine if it is effective for him. Just curious what the HCMA community knows and thinks about this drug? My Doctor is very concerned about my baby's gradient being in the mid-80s. If the drugs prove not to be effective, it looks like we will need to consider a type of surgery to "shave" the enlarged heart muscle tissue. Is there a medical term for this type of surgery? When my baby was an infant I remember talking with our cardiologist about this surgery and it was not a great option because of the scarring that would happen in the healing process. Any opinions regarding this?

Thanks So Much,
Rebecca Otterson
Ottersonclan

[Pam Alexson]

Rebecca,

I am sorry to hear your baby is having this problem.. Please e-mail or call the HCMA office as soon as you can and get a discussion on this issue started with them. It is always very concerning to hear of a anyone having increased gradient issues as well it is very tough when it is a child. You will hear from other parents regarding these same issues with their children and it will offer you much support and comfort to hear from them.

My concern is that you are seeing someone WELL versed in the care of an HCM child and if not that you do get that opinion as soon as possible. The surgery you refer to is called a septal myectomy. Children here have had them and have gone onto a healthy life. Those parents will share their stories and journey with you.

Again feel free to ask any questions here and we will all help. AND do include that call to the office.

Pam

[kathyn2]

I agree that you should call the HCMA office and discuss this with the gals there and get a referral to a center that is expert in dealing with HCM. I don't know if the drug you mention is good for a baby or will help their condition or not. I think your baby definitely needs further treatment. The surgery you refer to is a myectomy. You can look it up under surgical procedures here. If you do end up having to do that I hope you go to one of the centers for excellence such as the Cleveland Clinic or Mayo Clinic. Good luck.

[Sarah]

Many of us have been on disopyramide. the brand name is Norpace. I was on it for 12 years. Most doctors like to start you on it while you are in teh hospital so they can watch you and make sure that if you have a bad reaction to it, they can stop it right away. This is a common thing to do with the stronger heart medications like sotolol and dofetilede, etc. There is good data out there that disopyramide can reduce gradients.

I think you absolutely need to call the HCMA office to set up a time to talk to Lisa about pediatric HCM and where you should go for a specialist.

keep us posted.

s