Any new developements on pediatric AVR?

[delvalle6]

I've been researching and hitting a wall. I see people are still talking about the Ross Procedure. I was hoping someone has come across some new developements for Aortic Valve Replacements in Pediatrics. my son is almost six... and depending on the MD we see, we are told he will need to have a procedure within 1 to 5 years. They just aren't sure. He has a z score of +4 (ventricle enlargement) a bicuspid aortic valve, Moderate stenosis, moderate insufficiency, a bulge at the aortic root.... and who knows what else, I've been having a hard time getting specifics. I actually have to pry to get specific information--otherwise they just tell me his valve is leaking and he needs a new one. Why the downplay on terminology is beyond me. He's been tired a lot, so I figure he won't make it the 5 years before needing surgery... His twin is way more energetic. Well, I guess I babbled... but I was wondering if there was anything new, or something really breakthrough on the very near horizon.... Thanks.

 

[gijanet]

I don't know of .............

I don't know of .............

anything new that would be specific to ped's AV replacement, but I would presume that anything new in the adult arena would be just as valid for children.

On another note, have you considered getting a second opinion? Just my opinion, of course, but it doesn't sound like you are completely comfortable with your son's present care and followup. I have to confess that I am not as thrilled with our present PC as our first beloved PC who moved out of state, but she does answer all of my questions at our visits and sometimes my list is very long. She is much harder to get hold of between visits than our last one, but I still get my questions answered at appointments. If you are the least bit doubtful, I would not hesitate to obtain a couple of opinions from some of the larger ped heart centers. Just contact them and find out exactly what they need (usually last echo tape and report and any cath data and films you might have had done). Obtain these from your present institution and send them off. Then sit around for 4 to 5 weeks to wait for an answer. It's that easy and I was never charged for any of the additional opinions I sought out for Katie. This included Cleveland, Uof Michigan, Boston Children's, CHOP, and Texas Children's. I would ask to make sure things have not changed in the last couple of years, but I'm quite sure they will still do them for free.

Many hugs and please keep us posted. J.

 

[Susan BAV]

Hello to you -

I'm sorry I don't have any answers... but reading you had identical twins, one with bicuspid and one without, was AMAZING to me!!! And did I read one of your old posts correctly, that it was possibly related to depleted nutrients due to an illness you had while pregnant?

Have you considered emailing highly recommended surgeons who are currently working successfully in the pediatric field and asking them if there are any breakthroughs on the horizon? Some members here have had some success in receiving other satisfactory answers upon emailing surgeons. (I see Janet has suggested something somewhat similar.)

Hope all goes well for your sons. Take care and please post again.

 

[Lynlw]

anything new that would be specific to ped's AV replacement, but I would presume that anything new in the adult arena would be just as valid for children.

On another note, have you considered getting a second opinion? Just my opinion, of course, but it doesn't sound like you are completely comfortable with your son's present care and followup. I have to confess that I am not as thrilled with our present PC as our first beloved PC who moved out of state, but she does answer all of my questions at our visits and sometimes my list is very long. She is much harder to get hold of between visits than our last one, but I still get my questions answered at appointments. If you are the least bit doubtful, I would not hesitate to obtain a couple of opinions from some of the larger ped heart centers. Just contact them and find out exactly what they need (usually last echo tape and report and any cath data and films you might have had done). Obtain these from your present institution and send them off. Then sit around for 4 to 5 weeks to wait for an answer. It's that easy and I was never charged for any of the additional opinions I sought out for Katie. This included Cleveland, Uof Michigan, Boston Children's, CHOP, and Texas Children's. I would ask to make sure things have not changed in the last couple of years, but I'm quite sure they will still do them for free.

Many hugs and please keep us posted. J.

I agree with everything janet wrote (except i really like Justin new adult chd doc , so now he has 3 cards, lol) I do know as of a few months ago Boston still gave us a second op from Justin's cath cd and MRI & echco copies for free. I believe CHOP (childrens of Philly) still is free, But Justin adult chd card is on staff there now so we didn't have togo that way.
When I was looking for new docs and getting 2nd (3rd,4th) opinions for surgery, I contacted the ped cards and they would consult with the surgeon that had the most experience in hearts close to Justin's.
I can't remeber where you live, but If you live out west like I think, you could also contact some of the centers in Cal. Lyn

 

[delvalle6]

Thank you for your input

Thank you for your input

I have been trying to get a true second opinion, but my insurance company is making things difficult. I did get a second opinion, but the entire time she was giving me her dissertation, she would say "and I agree with Dr..." What I had really hoped was that she would look at the echo and ekg, look at my son and give me an untainted opinion, without reading the other MD's report. I felt like I was getting the old "yep, we stand united" thing rather than an actual opinion.
As for the question about my sons being identical, yes, you read correctly. They can't be sure why one developed the bicuspid and the other didn't, but they believe it is because I had twin to twin transferrence (TTT) which is when one twin takes all the necessary nutrients ( and then some) before the other can even try, then the second baby gets "leftovers", which isn't always enough for proper growth. there was only one placenta, and they had to share. I had a mild case, some twins are born without proper limbs or worse when this occurs. So far, we just have the one "side effect".
I am trying to get my son's records to CHOP, but the hospital has givin me a little bit of the run-around. They said they would send them, then they said the couldn't send them, then they said there were going to send them. CHOP has never recieved them, so I guess I have to get copies and send them myself. I would have done that initially; however, the hospital said they would do it for me, so I have wasted some time believing them.
The hospital here has a surgeon with an excellent reputation, but the hospital does not have a very good post-operative track record. I am still fighting to have options as to which hospital my son goes to. My husband is switching his insurance to provide more options. As of now, we both carry the same provider.