Does anyone have any experience with this? My dd was recently diagnosed with a brain aneurysm, and now with 40% ejection fraction, and possible cardiomyopathy. Anyone know what the treatment is for this?

I have no idea , but I know you must be worried. She will definantly be in my prayers. Keep us updated.

Okay, I do echocardiograms for a living so maybe I can help you out with the cardiomyopathy part. I've been in cardiology for 15 years. I am no doctor, but maybe can offer some insight. You did not state how old your DD is. Cardiomyopaty is often viral in youger people versus the type of cardiomyopathy older adults get from clogged arteries. It can be treated with many types of medications and the heart can get stronger without surgery. The normal number for ejection fraction in adults is 50% or better. In younger people it may be higher. The adults we see that are cadidates for transplants usually have EF (ejection fractions) of 20-25% or less. 40% in an adult would be considered mildly impaired function and would be most likely treated with meds and monitored quite regularly to keep track of the EF. I would wonder if there wasn't some type of other thing going on with the brain aneurysm and now the cardiomypathy. I would be looking at connective tissue disorders such as Marfan's. I'm assuming she has had an echocardiogram and they have ruled out any other heart problems that could cause this such as bad heart valves. If her EF deteriorates, they may want to do a heart cath to biopsy a piece of her heart to get an idea of what is causing it. I wish you the best. Please let me know if I can answer any more questions for you. I hope you have found a pediatric cardiologist to follow your daughter and to give you more information.

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My dd is 14. And yes, she has connective tiisue disorder, not named as of yet. If her DNA comes back with fibrilin=1 mutation, then she will have Marfan Syndrome. They have her on Losartan for the connective tissue disorder, and for the brain aneurysm to lower her blood pressure, which is already low. Her regular pediatric cardiologist said she was fine, but didn't read the echo , and 2 other dr.s were very concerned, we had a consult for December with a ped. cardio, and she called to ask why we weren't coming in sooner, it could be unsafe to wait. I told her our reg. cardio said she was ok, that's why we waited, she said no. She does also have mild root dilation, so she has had many echos done, and the one at their hospital was done 3 years ago showed no cardiac malfunction, so that worried her, too, since now it is at 40% so soon. She gets tired alot, and has always needed more rest and sleep than most.
They already stopped her from sports and contact games. She faints, and has fainted 3 times in the last year.

Oh, so sorry to hear about this. It sounds like you are really on top of things. I agree that you should probably go see the ped card sooner. Yes, I've got lots of experience. Can't believe on the little info you gave I got that one. Just remember, these days medicine is getting better everyday. They will need to find out why the EF has dropped. It's good that they have been watching her aortic root size, that is something you will want to monitor. Definately let her get more rest, sounds like her body needs it. Anyone else in your family have this? Is her aortic valve leaking? That could be a cause for fainting. Let me know if you have any other questions, or just need someone to talk to.

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I LOVE it here at MC. Ask, and you will always get an answer and support......can't say that about all boards I would be willing to bet!

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I don't have any advice, just wanted to offer my prayers and thoughts for your daughter. No little one should have to experience these things.

Thanks for your support. It's really nice to have such a knowledgable and nice group to "talk" to.
Yes, I can't believe you got the Connective tissue thing connection. You're a smart cookie.
It seems like everytime I turn around, it gets worse, and my dd is feeling very tired lately, so that has me concerned. She just started high school, and she is a good student. She just started the Losartan in July, so I know her body is still adjusting.
We have been monitoring her aortic root for a few years now, and luckily it hasn't gone up much. I'm real anxious to find out what is going on...

Carljc

I am so sorry you and your daughter and family have these challenges to face. Luckily you have the means to now find out what the cause of the challenges your daughter has been facing is. When the cause is found, very often the lessening of the challenge or even treatment to the extent of non-intrusiveness follows.

You will all be in my thoughts and prayers.

__________________
"Well-Behaved Women SELDOM make history."Laurel Thatcher Ulrich


"Yesterday is but a vision, and tomorrow is only a dream. But today well lived makes every yesterday a dream of happiness, and every tomorrow a dream of hope." Anonymous

"Your candle does not lose it's light by lighting another candle" Generosity

Have the courage to be yourself.