My 9 yr old daughter was diagonosed with bicuspid aortic valve disease with mild aortic insuffiencey about 2 years ago. At first they could not see the leak at all they could only hear it. Approximately 18 months later the leak is now visable and they were able to show us exaclty what it looked like and that helped my daughter to understand more of her condition. We fear surgery. The dr says she can wait to have valve replacement surgery until absolutly necessary. Would it help her if we had it done before then? Since we found out about this problem, she has begun having migranes and will see a neirologist. At first we thought it was because of her increased salt intake (per cardio orders) but once stopped she is still having them. I feel like she is falling apart at 9 yrs old. She has more specialist than my husband and I together. Any suggestions or questions? Thank you and God bless your advice.
Hi, I'm so sorry to hear about your daughter's health issues. Thankfully, I think nothing urgent needs to be done at this point. I also do not think replacing the valve earlier would help her; in fact, since the replacement valve has finite durability (around 10-20years), it would be wise to delay replacing the valve as much as possible. I think you should follow the "mild aortic insufficiency" periodically and/or when symptoms arise. It might be more than a few years before her valve function worsens.
I am not sure whether her migraines are related to her heart condition. My understanding is that they are not related. I think a healthy dose of reassurance would help her manage her medical diagnoses. Good Luck!
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