[Family Update]

Author: Kay (204.184.29.---)

Date: 11-26-02 10:50

First of all, I would like to tell Lisa thanks for all the information and help you have provided to me and my family. Here's my update:

My brother, Derek's dad, had an ICD implanted on Thursday, 11/14/02. His daughter had hers implanted this morning. Both are doing well. My other nephew, the one with dilated, sees his specialist next week to decide whether or not he needs one.

Now for Brandon. As you remember, Brandon is my 3 year old. My doctor and his doctor both agree that he needs an ICD. However, they say there has never (that they know of) been an ICD implanted in someone so young. Dr. Rhee, whom you talked to in Chicage and who is Derek's doctor, also confirmed this. They say the leads are too large to go through the veins of someone so young. So they are waiting until he gets older. This scare me to death because this is why Derek was not implanted with one at the age of 10. They were waiting for him to get older. Dr Rhee has not seen Brandon's records. I am in the process of sending them to him. He has mentioned getting a portable defibulator for my home. I'm wondering if insurance would help pay for something like that. Do you know? I will ask him that question the next time I talk to him. I did mention to my sons doctor that you had talked to Dr. Tobben from Texas who also confirmed that Brandon needed one. He said he was friends with Dr. Tobben and would give him a call. I just wanted to give you an update on what was going on. Also, do you know if an ICD has been implanted in someone this young? Dr Rhee did say that they implanted one in a five year old. They did not run the leads through the veins, they just laid them beside the heart. After he looks at Brandon's records he will let me know if this is necessary. Thanks again for being there for me.

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[Re: Family Update]

Author: Sarah B. Board Moderator (12.144.99.---)

Date: 11-26-02 11:12

Kay,

The FDA just approved AEDs (pediatric and adult) for home use so your insurance company should pay at least part under their durable medical equipment coverage. Call Lisa at 973-983-7429 to find out where to buy one.

I'm glad the family is doing well with their ICD procedures.

While I know you are very scared about Brandon, you have a great team working on his behalf and they will figure something out.

take care,

Sarah