Thinking Out Loud

[Andrew'sMom]

Hi. I'm new here. Found you all while info-seeking online. Looks like a good place to think out loud. My son has BAV, MVP with regurg, VSD (closed at age 4). We were at the cardiologist last week for his annual echo ... dr said my son's aortic root is dilated due to the abnormal blood flow through the BAV. I did not ask the measurement of the aorta as this was a complete shock to me and I couldn't even think straight. He explained how the dilation is measured in relation to Body Surface Area, and said my son's dilation measured in the 97th percentile, which he described as "pretty up there." He restricted physical activity (no football, no wrestling, no weight lifting, no weight training) and scheduled us back for 1 year. Touched briefly on aortic root replacement should things get worse. I am in the process of getting a copy of the echo report to have a second opinion, and also been writing out a list of questions to call dr back with. My biggest question is what the measurement of his aorta currently is. Also wondering what kinds of symptoms to watch for that would indicate a problem. Wondering if there are any kinds of meds that can be used to treat the condition before OHS, or is OHS inevitible? Wow. I am still in shock. We knew from the beginning that he would likely face OHS for valve replacement when he was middle-aged. I guess I am just scared because he is only 5. I have been reading through the threads on this forum and know that there are others out the much worse off than we are. It just makes me so sad how his life has been changed so drastically so quickly. He LLOOVVEESS football; on his school biography paper he wrote that he wants to be a football player when he grows up. This fall was the first year he was going to play termite football. I haven't even told him yet that he can't ever do it. Crushing my child's dream makes my heart so heavy; yet in another way it seems so insignificant when you look at the big picture and the fact that at least he is alive. We have been taking him to the drs at Children's Hospital of Pittsburgh (PA). Anyone out there been there or have comments? I'd appreciate any advice or "been there, done that stories" as I sort through this. Thanks!
An after thought: as I am thinking this over and over and over in my mind, I keep coming back to my husband's side of the family. His grandmother died suddenly of an aortic aneurysm at a young age (late 40s I believe); his mother has various vascular problems (no CHD), including having had a series of mini-strokes at the age of 59; his aunt recently died of what was ruled "natural causes, massive internal hemorrhage" at the age of 48. Could any of this be significant. It never crossed my mind to even include it in my son's medical history, but now that I am reading up on this aortic root dilation I am seeing lots of things relating to aortic aneurysm and aortic rupture.

 

[geebee]

Hi,
I just wanted to welcome you. There must be nothing harder in the world than to have your child in this situation. Just try to take comfort in the fact that it is 2006 and there is so much that can be done. It was not all that long ago, in the realm of time, that all of us would not be here but for medical advances. We truly live in miraculous times.
I do not have much to provide in the way of information but we have a number of heart-moms who will be on to help out.
You have made your way to a great site and I am sure you can get the answers and support here.

 

[tantekay]

Hi - Glad you're Here

Hi - Glad you're Here

Hi! I'm glad you found this group. I found them while looking for information about aortic insufficency because that's just one of my son's problems. I was wondering about how this whole insufficency thing worked - many many questions. I 've found the people here to be very caring and wonderful to listen, talk to, and can give great advice. My son was born with single ventricle, ASD, VSD, ventricular inversion (which also caused transposition of the great arteries) and we've always had the topic of leaky valves. Most have been trivial -- just a drop or two. But apparently the aortic valve is getting worse. There's talk of just oversewing the valve since he doesn't really need it anymore due to previous surgeries. He's had two surgeries (1 at 4 weeks and one at 5 months.) and one to go - planned for this summer. We've been told that he will never have the endurance to be a marathon runner and there's a question of what sports he may be able to do. I'm thinking that since he will have had 3 OHS by the time he's 3 I can count out football, and my husband wanted him to play hockey but I think that may be out as well. I know how you feel having to tell your son that he can't to the things he loves. I worry about having to tell my son the same thing when all his friends are starting sports. My plans are to find things he can do and throw all my energy in to getting him excited about the alternative sports. My dad golfs so I figure that could be something special he does with his grandfather. As for the family hisory, I definately would include the anyone with any heart issues and I think that there's never anything wrong with getting a second opinion. Everyone has to understand that this is your baby and us heart moms never settle on anything unless we're sure it's the right thing. I feel very lucky that I have a cardiologist. cardio. nurse, and surgeon that I like and trust. Whenever something comes up that I'm not sure about I call the nurse and she'll either answer or have his Dr. call me. Her response is "whenever you have a question about your son, it's better to call and find out than sit and worry about it and make things worse on myself." Their support is awesome. So, get that second opinion and keep in touch with us. I hope I've been able to help even a little. My thoughts and prayers are with your son and your family.

 

[Ross]

No sense getting worked up until you have the echo in hand. Usually there are no symptoms. Many a person has had aneurysm's and never knew they had it until it was too late. Get the echo and if it says 4.5 or above, a year is too long to wait for the next echo. If it's that big, every six months.

 

[Gemma]

No sense getting worked up until you have the echo in hand. Usually there are no symptoms. Many a person has had aneurysm's and never knew they had it until it was too late. Get the echo and if it says 4.5 or above, a year is too long to wait for the next echo. If it's that big, every six months.

Would it be the same measurement for a 5-year-old?

Andrew's Mom, sorry I don't really have any experience with what you're going through, but welcome anyway. I'm sure there are many other members who'll have more info.

My boyfriend Jim had a BAV and his only symptom (at 26) was chest pain when resting. If you go to "Must Have Reference Links" in the Reference Sources section, there's lots of pages there including the second ACC/AHA page which I think has info on symptoms etc.

Gemma.

 

[Emma]

Hiya, welcome to the group!
I'm mum to a 6 year old who had complete AVSD which when 'repaired' was followed by severe mitral regurg and pulmonary hypertension. She has since had a mitral valve replacement and is doing very well now.
I'm afraid I can't help with the aortic root bit as this hasnt been one of Chloe's problems but I can empathise with you as a mum worrying about her heart child, cos I know only too well how that feels. Also, the waiting before you find out the extent of what you have to worry about is almost unbearable at times, so my heart goes out to you!
I have a friend over here who has an 11 year old son who sounds similar in condtion to your son and the symptoms he had when he got quite sick were pains in his chest and legs and breathlessness. Of course, symptoms vary from person to person, even with the same condition, so your cardi would be the best person to ask what to look out for I suppose.
Hoping you find some answers to your questions soon. I'm happy to talk about our experiences in more detail if you feel they would be of any help to you!
Love Emma
xxx

 

[Ross]

Would it be the same measurement for a 5-year-old?
Gemma.

Opps, missed that part, sorry. I really don't know when it comes to Peds.

 

[Superbob]

Hi. Just wanted to welcome you and to express my concern. I know it must be tough to be facing this with a 5 year old. I am not well informed on pediatric heart problems, but others will be able to help out, I am sure. I did have the dilated root problem -- when it became severe, it was being watched every 6 months with an echo. I was informed there was nothing that could be done to stop or reverse the dilation -- no medicines, nor would exercise or diet help with that aspect of heart problems. Would just have to wait til the time was right for the valve and root replacement, which came a year ago.

I can emphathize totally with the sports angle. I just want to submit that it is possible to become quite physically active after having this done. Football may not be realistic but there may be lower-impact sports that could be enjoyed. I am doing regular workouts, including Nautilus machines. Of course you'll need expert opinion on that -- these are just the rambling thoughts of a 64-year-old, who mainly wanted to express support and to encourage you to seek out all the information you can. We all be be rooting for Andrew and for you.

Cheers,

Bob

 

[francie12]

Hi, just wanted to give you a warm welcome. I don't know what I would have done in the past year and a half without this site. So glad you have found it. When I was reading your post I was wondering if you have a doctor with whom you feel completely comfortable in asking all the questions you need. We did not at first and had to look for another who was comfortable with a family who needs to know all the details. A pediatric geneticist, working with our new cardiologist, completes the picture, and now we finally feel fully informed and on top of the situation.

Our son, 13 yrs, also has an aortic root in the 95th percentile for his BSA. I'll just tell you what our doctors told us after lengthy discussion. (Your situation is different in some respects from ours--Matt has a moderately leaky AV and his LV is somewhat dilated, EKG showing signs of some degree of hypertrophy.) They are OK with all sports for now, including track, with the exception of weight lifting or any isometric exercise. However, they all seem pretty happy that Matt likes golf and intimated that he may want to think of that as "his" sport for the long term. Lisinopril, an ACE Inhibitor, has been prescribed to lessen the workload on the heart and protect the ascending aorta. We are on a yearly checkup schedule for echos, but the peds geneticist recommends an MRA of the whole aorta scheduled for next summer. (They are only able to image where the dilation begins at the root and not how far it extends. Next yearly echo in two weeks.)

Symptoms were were told to watch out for are light-headedness, shortness of breath, dizziness and decreased tolerance for exercise.

There is alot of info on this site about BAV's and their connection to dilated aortas. The Bicuspid Aorta Foundation is also a great resource.

Please keep in touch. We will be thinking of you and your son.

 

[Andrew'sMom]

thanks

thanks

Thanks to all who responded so quickly! It's nice to folks to talk to who are going through the same stuff. I should have a copy of his echo report in hand by Wednesday, and hope to have a telephone appointment with the dr later this week to talk about all these things that have come to mind since last Wednesday. As for feeling 100% comfortable with the dr to ask questions, I think I am, but I have never dealt with anything this in-depth. I guess I will see after these next few encounter with the doc how things go. I am a bit unsettled in general about docs, here's why --- When Andrew (second son) was born we lived in Charlotte NC. He was diagnosed at The Sanger Clinic in Charlotte. My third son Daniel was born with a murmur and we took him to Sanger and he was diagnosed with a VSD and normal aortic valve. We moved to Pittsburgh a few months later. When it was time for the annual echos we took them to Mercy Hospital as that's what our insurance mandated. Andrew's echo findings were a repeat of the year before; no change. Daniel's echo showed that his VSD had closed completely, but they said he had a BAV. The cardio said that since his VSD was closed he no longer needed SBE and completely signed off on ever seeing him again!!!! We changed insurance plans the next year, and when our fourth son Robert was born with a murmur I took them all to Children's Hospital of Pittsburgh. All 3 were echo'd. Andrew's problems remained unchanged, except the VSD was almost completely closed (yay!). Now Daniel's echo showed the VSD definitely closed, but Children's told me he did not have a BAV. Doc said his aortic valve has 3 cusps, 1 is deformed, not a true BAV, but not normal either, it was somewhere in between and seemed to be functioning properly. So there you have it ... 3 echo's on the same kid, a different diagnosis each time. go figure! unsettling.
Fourth son, by the way, was declared to have a structurally sound heart with a functional flow murmur!!!
Sorry for being so long-winded...I have a lot on my mind!!!!! Thanks again to all who responded. My best wishes go out to each and every one of you also as you deal with your problems.

 

[cocoalab]

Welcome Andrew's Mom!

Welcome Andrew's Mom!

I have a son named Andrew as well. He was 5 when we learned of his heart condition and he had his valve replaced at age 6. So I relate a little bit with you.

I guess I am suprised that if the anyurism is at 95% (which I really don't know wht that means) that he doesn't want to see him for a year. I think you are wise to get that second opinion if only for your sanity.

I am kind of going through this with my youngest who was recently diagnosed with another heart condition and I am finding myself uncomfortable with our current plan of action which is wait until April for another test and 6 months for a stress test.

I also totally understand the sports restriction bummer. Andrew had been pretty active prior to his last valve replacement but now is pretty restricted from everything physical. We have been working on getting him to cardiac rehab but this has been going very slow. He unfortunately had some complications from surgery and then suffered a cardiac arrest at school 7 weeks later. This has put a big damper on his basketball playing.

I think it is wise to have Andrew play things that he should be able to continue for the rest of his life. If golf is an option it could be agreat one. I wish we had learned a musical instrament but never had the opportunity for that. Maybe now is the time to expand his horizons to find other things he can excell in. My Andrew is a good artist and it is nice that he can feel good about that.

Well just some ideas and a big welcome. I do hope your visits and calls give you answers to help you make decisions. I never feel settled until I know what is on their minds and where things look like they are heading. All the best to you and your family.

 

[gijanet]

Hi, and welcome!

Hi, and welcome!

Aortic valves and aortic root dilations are out of my arena; however, I am disturbed (just ask around, I am really a disturbed person! ) by a few things. As WEndy mentioned, if your son's dilation is 97th%, and "pretty up there" - enough to have your son's physical activities limited, then why the year wait for a follow-up. Just my two cents, but I don't like this at all. I think you are right to be concerned.

I would jump on that second opinion and third, if needed. Warning here, though: I am Queen of Additional Opinion Land. Before Katie's second surgery, we sought out five opinions from the larger pediatric hospitals across the country. Before Katie's last surgery, we sought out an additional opinion, just for the purpose of peace of mind. Actually, we were hoping for a miracle, but we didn't find the particular one we were looking for. Looking back at her last surgery(ies), though, we did indeed witness a miracle.

Most of the larger pediatric heart centers will not charge you a dime for an additional opinion. I can personallly attest to this for Boston, University of Michigan, Texas Children's, CHOP, and the children's hospital at the Cleveland clinic (I forget the name of that one as we were corresponding directly with Dr. Mee's staff and then ultimately Dr. Mee). Your home institution might charge you for sending the echo and report out. Ours didn't, but I would certainly ask first. If they are going to charge, then you might request a copy of all and then make copies yourself, in case you want additional opinions. I just e-mailed the surgeons myself, gave them a short version of Katie's diagnosis, asked them if they would be willing to give us a second opinion, and what they would need to provide that. All of the surgeons I contacted replied within 48 hours, with the exception of Dr. Mee, but his guard nurse replied within that time frame telling us what we would need to provide. Dr. Fraser from Tx Children's even called me at 6 PM one evening. I was blown away. The actual opinions take from 3-6 weeks as most of these institutions are teaching hospitals and your child's "case" will be used in conference and as a teaching tool. The more eyes the better, I say.

Please keep us posted and we will be prayign for good answers. Hugs. Janet

 

[aussigal]

Hi and WELCOME from me too

I am a mum of 3 heart-boys and 2 of those have the BAV and my youngest is the one with the dialted aorta...I dont know where he fits on the percentile-bit but I do know his measurement is 3.5cm ...Steve is 10 and has both mitral and aortic regurgitation, but hasnt been put on restrictions by his cardioligist ONLY those his mother (me) enforced, the weights and rough sports (they still play footy but rest more often and dont tell me until they have played!)

Prior to their diagnosis all 3 of my boys played footy and had absolutely no restrictions until recently... i am looking for another Peadiatric Cardio to get another opinion for them ...as I felt it only fair...( I wanted and got a 2nd opinion for myself )
Steve complains of shortness of breath & tires easily so we just remind him to rest and keep well hydrated...the eldest boy gets frequent headaches which are often migraine-like. None of the 3 boys are on any meds tho I am investigating beta-blockers for the 2 BAV boys.

Its a bit tricky juggling this all for us at the moment cos my own BAV & aneurysm are practically at operating-size so I have 4 hearts I am trying to get the best-care for...
Our 2 BAV boys are on 12 monthly checks at present and apart from their echoes they havent had any other tests

As a mum ,I feel from the mixed stories/reports on one of your boys' in particular I think a 2nd opinion is warranted.

It may well have passed on thru the family...a genticist may be of value to you as well...I would personally give Arlys at the BAVD foundation a call and a big teaching hospital in your area as well...Some of these hospitals are running trials/studies and things to try help unlock the genetic mysteries of this stuff.

AGAIN , WELCOME TO OUR WORLD ....

 

[tantekay]

just thinking

just thinking

Hi! I was just reading posts -- let us know if and how the 2nd opinion goes -- I've heard a lot about Dr. Mee -- my son's cardio has sent several patients to him -- even read the book Walk on Water about him and ped. heart surgery (excellent book but a tear jerker at times and a real eye opener from the dr. point of view). But I've heard that he was retiring and not taking new patients -- but it never hurts to check. Also let me toss out UVA. Don't know if it's that large, and better at valve problems compared to the others Janet mentioned but that's where we've had surgery and I've been pleased. But Janet has certainly have more valve experience than I. Eric has a leaky aortic valve, but due to previous surgeries and his condition he really doesn't need that valve but they don't want the leak to cause problems for his 1 ventricle - which is definately understandable. Anyway, UVA is a teaching hospital though and even if you go somewhere else, they may look and offer an opinion. Well, I'm off to play candyland with my son - which means run the little men around and throw the cards everywhere for me to pick up later haha And best of luck

 

[Lynlw]

Dr Mee left in December, Lyn