Cleveland Clinic -- Pediatrics

[Andrew'sMom]

Hi all. Can any of you heart moms help me? We are headed to The Cleveland Clinic for Andrew's second opinion. Have any of you been there? Do you have any "we love Dr. X because..." info to share? We haven't scheduled the appointment yet. I wanted to post here first to see if anyone had any info to share. The are quite a few pediatric cardiologists, all of whom I am sure are good doctors, but none has BAV disease listed as a specialty. Several have congenital heart defects listed as a specialty. Also, for those who suggested a consult with a geneticist, how does that come about? Did your cardiologist refer you to that doctor? What does a meeting with a geneticist consist of ... trying to track where the CHD came from, or possibly who else in the family could have one, or where it may go in the future? Thanks again, everyone, for all your help.

 

[tantekay]

Wished I could help

Wished I could help

I wished I could help -- the only dr. I had heard of from Cleveland was Dr. Mee (now retired). I'm know that there are several other Mom's on here who have had contacts with Cleveland and I know they can help. If I hear of anything, I'll let you know. I also would be interested in the Genetic info as well. My best to Andrew and my prayers are with you.

 

[Ross]

When in doubt at Cleveland, go to the Department Chairperson. In this case that would be: Larry Latson, M.D.
Phone: (216) 445-6532 Or Peds Card Surgery:Emad Mossad, M.D.
Phone: (216) 445-7416

 

[sylviayasgur]

hi,
sorry but i don't know any pediatric docs at the cleveland clinic.
i do however, know that dr. jan quaggabeurre (unsure of the exact spelling) at ny columbia presbyterian is an excellent pediatric surgeon specializing in the ross procedure in children. he has done numerous and, actually did pappahappystar's surgery (burair).
wishing you the best of luck,
sylvia

 

[cocoalab]

Besides Dr Mee the surgeon who has retired, I am also aware of Patrick W. O'Leary MD. He is a cardiologist who has given some advice at another board I am on. I do not know if he is pediatric or not but he is quite knowledgeable and seems like someone I wouldn't mind seeing or taking my child to. He is quite knowledgeable about congenital heart defects. Maybe you can check on his credentials. I believe Mayo is very picky about who they let on staff so you should do well with whomever you decide on.

All the best!

 

[aussigal]

I cant give you any persoanl experiences with the CC either...

But I would be happy to chose one of the ones that listed CHD as their specialties...

as for the Gentics...here in Aus. I just rang the genetics clinic up and they were happy to take my whole family on just from the phone-call...

What it involved here was me filling in forms listing all my specialists and the problems they have treated me for and got from them the results of any work they had done on me..
Then I went to see the Genticist who asked lots and lots of questions and he filled out a huge long questionnaire and took lots of notes and did some measurements and looked at my scans and stuff...A week or two later he sent me and my doctors copies of his report of what he felt our/my problem was based on his educated opinion.

I was originally going to go along with the 3 boys but the geneticist called and asked if I could come by myself as the boys would not have been well-behaved for the 2 or so hours the appointment took...It was similar to a full physical examination including neurological tests etc.

I also took information regarding both sides of my grandparents and what they died of. And I took the kids paediatric Cardio reports with me as well.

It was determined that we most likely have Familial Bicuspid Aortic Disease complicated by ascending aortic aneurysm. We had been orignially also checking for the possibility of Marfans syndrom as 2 of my Doctors had said that was what I had. But this BAVD presents many similar traits to Marfans so that is possibly why I got initially labelled Marfans.

All in all it was a very useful visit and he was quite thorough and a lovely Doctor too.

From all reports I have heard about CC you will get very good care there.

 

[francie12]

Hi--Matt was referred to the peds geneticist by his pediatrician to rule out Marfan's, but a cardiologist should do it if you ask them. The consultation consisted of a very detailed family history, examination and review of Matt's heart situation to date with recommendations for the future. This doctor seemed to be an expert in BAVD as well as TAA (thoracic aortic aneurysm) syndrome. While cardiologists include a wide variety of heart problems in their practice, peds geneticists are especially tuned into the latest research in these areas. She was not content, based on her experience, with the usual echocardiogram, but ordered an MRA of the whole aorta from top to bottom. With referance to screening other family members, she will order it if (and the logic of this actually failed to grab me) Matt's dilated aorta shows signs of progressing. I guess that would prove to her that he does indeed have the connective tissue problems associated with a BAV. But I think, as do others on this site, that the presence of a BAV alone is plenty of reason to screen first degree family members.

 

[gijanet]

Hi, A.M.

Hi, A.M.

We did consult Dr. Mee before our last surgery(ies), but all of our conversations by phone and e-mail were with Dr. Mee, himself, or through his guard nurse, Debbie. A staff PC did evaluate the echo data before Dr. Mee did, but I can't for the life of me remember his name. Oddly, looking back, Cleveland was the only institution that we never got a followup letter summarizing their "verdict."

Anyway, a fellow heart mom from PDHeart swears by Cleveland. Dr. Mee did her son's last surgery, a repair job. Her son Jason had the Ross as an infant. During this last surgery, Dr. Mee repaired her son's aortic valve and replaced the pulmonary valve with a homograft valve. She just had a followup appointment with one of the staff PCs. (Things went very well, BTW) Let me give Rhonda a shout and see if we can't hook y'all up. PM me or e-mail me your e-mail address, and I'll send you Rhonda's e-mail address if she gives the thumb's up that it's okay to. I'm sure she will as we conversed quite a bit when I was trying to obtain that additional opinion from Dr. Mee, but I always feel like I need to ask before I go giving out people's personal e-mail addies. Hold on..............help is on the way.

As far as the geneticist goes, we did participate in a study out of Baylor and Tx. Children's on laterality defects. As participants in that study, we can meet "free" with a staff geneticist to go over our individual results, but we just haven't found time to do that yet. It is a five year study, with about three years left on it, so there is no real rush. Plus, based on today's technology and Katie's present anatomy, she will not be "permitted" to have children as it could very possibly kill her. (The informal study out of Michigan is not encouraging. OUt of 6 young women with the fontan circulation who conceived, 2 died, 2 had to be listed for transplant, and 2 are doing okay so far. I don't like those kinds of stats at all, thank you.) Anyway, as Andrew will certainly be allowed to father children, I would pursue the genetic consult at some time. Ask the PC at your appointment how to go about that.

Talk to ya soon. Hugs. Janet

 

[gijanet]

Got your PM.

Got your PM.

You did fine. Just sent you one back with Rhonda's addy. Just click on the private messages box up under your Welcome message in the upper right hand corner. Good luck. I hope Rhonda can answer your questions. Please keep us posted. Hugs. Janet