12 yr old son/aortic insufficiency

[francie12]

Hi--This is my first post. I've been lurking for awhile and am most grateful for the valuable information and support. My 12-yr old son just had his first 6-mon follow-up echo after his June diagnosis of moderate aortic regurgitation/bicuspid valve, and I'm happy to say that there has been little or no progression. Hopefully the situation wil remain stable for the long term. I was hoping anyone in similar circumstances could share their experience, especially with children and teens. Also, since our Drs. are not in perfect agreement about the use of ACE inhibitors at this stage, I would appreciate any input anyone has about this. Echo shows LV diastolic dimensions at high limit of normal and borderline LV hypertrophy. EKG shows LV hypertrophy. Naturally we want to delay surgery as long as possible, but are weighing possible side effects of meds--especially at his age. Next echo in 6-mons. Best wishes. Jane and son, Matt.

 

[ALCapshaw2]

While I'm no spring chicken (retired actually), when I was diagnosed with Aortic Stenosis I did as most everyone else who first hears this news, I freaked, and sought a second opinion.

The second cardiologist suggested that I could postpone surgery my taking an ACE inhibitor to reduce the internal BP and I jumped at the idea. He was hoping to give me 3 to 5 years. ONE year later, my aortic opening could no longer be visualized and I had a 'slight' enlargement of my Left Atrium. I believe I got to surgery 'just in time.

I survived the surgery but now, 2+ years later, I began having heart arrhythmias including (benign) Premature Atrial Contractions (triggered by caffeine, even from chocolate) and Atrial Fibrilation (triggered by exertion).

An internist suggested that the atrial fibrilation is most likely a result of the ENLARGED LEFT ATRIUM. Some people are fortunate and find that theirs reduces in size after surgery. Mine did NOT. As you might guess, I have become a proponent of EARLY INTERVENTION to prevent the PERMANENT damage that can result from delaying surgery including heart muscle damage, thickening, and enlargement.

My recommendation to you is to consult with a good Heart Valve SURGEON. Surgeons are well aware of the consequences of waiting too long and prefer to operate before there is irreversible damage. I'm sure you and your son are terrified of the prospect of "Heart Surgery", but at his age, his recovery is likely to go very smoothly. Survival rates for first time patients under age 60 are around 99% when performed by surgeons who do many similar surgeries.

Whatever you do, be sure to have regular echocardiograms to track any changes. And be sure to ask for copies of those reports for your own files. I plot all the numbers to look for changes in mine.

'AL Capshaw'

 

[ericaj]

twenty one

twenty one

Hi, I am age 21 so a bit older but still in that general category of young adult
sorta anyways. I have not had repair/replacement and have early moderate stenosis and insuff. of Bicupid Aortc valve and Mild Mitral Valve Regurg. - My question though is what are the Ae Inhibitors used for - or what is there action to holding off surgery for more years?

Erica

 

[Harpoon]

EARLY INTERVENTION


Can't say it enough, Al.


I'm one of those "congenital folks" who's lived with an "atypical" heart all my life. I was VERY lucky not to have any complications come up (since my initial surgery after birth) until my late 20's but they came with a vengence and now, in addition to being on anticoagulants to protect my "nearly new" artificial tricuspid valve I'm also on an ACE inhibitor, two diuretics, and digoxin to supportheart function. In addition, I'm on a medication to combat the acid reflux all the other meds I take can cause...

For a lifetime.


There probably was some damage sustained to my heart because of the compromised tricuspid valve and some related problems and I probably won't really "recover" from them. I'd say my heart is about 85-90% of what it used to be. That's still pretty good, but it's not where I'd like it of course.

My first sign of trouble was a leak in part of the original repair to fix my heart after I was born. Though it's hard to say, it's possible that if we had fixed that leak in the beginning, I would still have my natrual tricuspid valve. Kind of an academic argument...


WHile surgery DOES have a lot of inherent risks, it may be that in your situation, doing a surgery that's more than likely to be required at some point NOW is better than waiting until the problem becomes more serious.

That's a decision that you'll have to make after speaking with a heart surgeon or two (or three...)

 

[francie12]

Hi, Erica--My understanding of ACE inhibitors is that they work by blocking the production of Angiotensin Converting Enzyme (ACE). The result of this is arteries that are more open and relaxed, flows through more freely, the heart needs to work much less. What this means to us is that left ventricle enlargement and hypertrophy progresses at a slower rate, delaying the necessity of surgery. Our Drs. here are telling us that there are very specific measurements of LV dimensions that indicate when to go to surgery. The echo will tell us when we get there (hopefully, not for a long while). My question is, do all surgeons agree on what that point is? Thanks for all input.

 

[ALCapshaw2]

Cardiologists are NOTORIOUS for wanting to postpone surgery for as long as possible. The unfortunate outcome from this is that many experience PERMANENT DAMAGE to the heart muscles / walls as a result of waiting too long.

Also, a standard echo is somewhat crude and doesn't always give the whole picture. One of our members was told by his surgeon that his diseased valve "fell apart in his hands" once he got in there. This was definitely a case of 'just in time'. His echo results did not look that alarming. I doubt that your son's situation is that advanced, but waiting too long increases the risks.

Better results can be obtained from a TransEsophageal Echo (aka TEE) where an ultrasonic transducer is placed down the throat right next to the heart. Some people dread these, but with enough Versed and Demerol(?), the patient doesn't feel or remember a thing. (I've had two, not counting the one in surgery to make sure everything was working correctly before sewing me up).

Personally, I would think you would be more comfortable having a surgeon's opinion on your son's status and recommended criteria for surgery. You could ask your cardiologist for a referal or make your own appointment after doing a search for respected (pediatric) heart surgeons.

As the Boy Scout Motto says,
BE PREPARED.

'AL'

 

[RCB]

DITTO Al's message

DITTO Al's message

The same thing happened to me- put off surgery as long as I could.
Result- A severely enlarged heart and A-fib, hence high risk surgery.
Cardiologist will always tell you to wait, when you should be getting
the surgery over with as soon as possible.

 

[francie12]

Thanks for your kind help, AL, Harpoon and RCB. We're going to go with your advice and seek a second opinion with a surgeon. I had the good fortune to watch a live webcast of Dr. Paul Stelzer doing a Ross Procedure. He answered one of my questions live during the surgery and e-mailed me later to follow it up. (In my opinion he is not only a great doctor but a great human being) I got his recommendation for a very experienced Ross surgeon in Indianapolis, Dr. John Brown. We'll go with Dr. Brown unless we find someone equally experienced (100+ Ross Procedures) closer to Iowa. Anyone know of anyone? Thanks again.

 

[Arlyss]

Regarding Bicuspid Aortic Valve Disease

Regarding Bicuspid Aortic Valve Disease

Dear Jane and Matt,

I have been trying to think of what could be most helpful to you both. It can indeed be a challenge to find the right combination of medical and surgical treatment at any age, but when someone is young and still growing, there are special considerations.

The bicuspid valve itself and its treatment is very important. However, I would want the best diagnostic techniques available today used in order to tell me everything about myself that is part of the big picture for those with bicuspid aortic valve disease. The most important part of that big picture is the aorta and the heart and its valves. It is also important to know about and treat blood pressure, because it can be high or rapidly fluctuating, even in those who are quite young and have this condition.
In case the medical professionals you speak with are not aware of both the valvular and aortic aspects of bicuspid aortic valve disease, this medical paper may be helpful to share with them. It gives a good overview of the condition.
http://circ.ahajournals.org/cgi/content/full/106/8/900?eaf

Once they know all about you, a plan should be put in place that addresses everything at the appropriate time. Yes, the Ross procedure is an option for the aortic valve, when it needs to be replaced, especially in the young because it has been found that your own valve will continue to grow with you. The pros and cons of any solution, including the Ross, need to be fully explained. As others have mentioned, the right time to deal with the valve is very important so that the heart is not irreversibly damaged.

However, what about the aorta? How large is it? The degree of abnormality of the aortic tissue is also important, and it should be understood and factored into any decisions. Aortic surgery is a very large surgery in and of itself. It is important for anyone to know all of their options for both the valve and the aorta before choosing the best sequence of treatment for them individually. There may be options that can address both the aorta and valve in one surgery that are appropriate, but again, this is an individual assessment that must be made taking all the important factors into consideration.

For the valves, aorta, and vascular sytem generally, medical treatment drawn from the major categories of blood pressure medications are part of the big picture look. I believe there is some work in the medical literature indicating that ACE inhibitors, along with lowering blood pressure, also have a positive affect on the actual wall of the aorta. If I locate those references again, I will post them here. What is appropriate for each individual is a consideration. I am aware of a child under the age of two with a severe aortic condition that was given beta blockers.....perhaps the youngest child I know of that required aortic aneurysm surgery.
My husband has had both valve and aortic surgery. He takes four different blood pressure medications daily. It is my hope that they will protect him from further valve or aortic problems, but only time will tell. At least I know that everything that is medically known is being done to help him.
Today, there is so much more we would like to know about Bicuspid Aortic Valve Disease. But there are solutions that, when taken together in the best combination for an individual, are excellent options. The challenge is to find that combination. My concern is that if all the focus is on the valve only, that best combination for an individual may not be identified.
Just a reminder that bicuspid aortic valve disease is a genetic condition in families, and that having everyone evaluated for it makes it possible for anyone else affected to also have the best possible opportunity to treat it early.
Best Wishes,
Arlyss

 

[Arlyss]

A Few More Thoughts

A Few More Thoughts

Reviewing my post above, perhaps it would help to add a little more to it. Bicuspid Aortic Valve Disease is not the same in everyone, and more work is needed to understand those differences. Some people have narrowed (stenotic) valves, which is what my husband had. Others have a bicuspid valve that primarily leaks. Leaking valves at a young age are often accompanied by an enlarged aorta, and this is thought to be related to a greater weakness of the tissue. If there is a greater tissue weakness, there is even more reason to question how strong the tissue of the other heart valves may be. This is what makes the Ross procedure so controversial, because if the pulmonary valve and tissue is also weak, it is feared it cannot hold up in the aortic position for very long. If it doesn't last very long, it's appeal as a valve that will grow with a child over time may not be realized. In someone as young as a child, to have a leaking bicuspid valve and an enlarged aorta, in my opinion, I would think they must have very fragile tissue, or it would be holding up better. It is the fragility of the tissue in those with Marfan syndrome that has resulted in the position that those who have it should not have the Ross procedure. In my opinion, it is a question that should be asked not just about Marfan syndrome, but all connective tissue disorders, including bicuspid aortic valve disease. If it is not suitable for a child with Marfan syndrome, can it be suitable for others with fragile tissue?

Regarding blood pressure medication, I would want to be reassured that the safest, mildest (i.e., least side affects) medicines have been chosen. They can buy time in terms of sparing the valve, heart chambers, and aorta, and allowing someone to wait for surgery a little longer. This can be important to everyone, but especially a child who is still growing.
The trade offs and choices are not simple or easy, but out of it all, I sincerely hope you find the very best help. It is well worth asking all the questions.

Arlyss

 

[Oscar61]

welcome

welcome

Hi Francie,

I was actually looking to email you directly but looks as though you didnt have that option checked off under your user menu.

I also have AI (aortic insufficiency). I have read through the reply posts in regards to your initial post. I will try to respond to your issue as well as my thoughts on some of the comments I've read.

My first question is does your son have a regurgitation (leakage) problem, or stenosis? These are two completely different things which both fall under the category of AI. But I don't seem to remember you mentioning one or the the other, however a number of replies mentioned things in regard to stenosis specifically.

I am 30 yrs old and was just diagnosed with my condition 6 months ago. Through much examination and family history questioning it was determined that my conidition is one of being congenital also. That may or may not be a comfort to you in the sense that I have gone this long without having to have surgery as of yet. A point in reagrds to that is my following question. One of the most important factors (and all of them are important with the heart...aortic root, tissue disease,etc.) is the size of the left ventrical. The longer you go through time the more it expands. This I'm sure you already know. It's hard for me to say (needlessly) that I can only assume the guidelines for a 12 year old's heart are different than that of an adult. Again just an assumption. But to give you a frame of reference the American Heart Ass. states a guideline for surgery at 75 mm (some refer to this as 7.5 cm) for the size of the left ventricle (referred to as LV or LVEED). Mine right now is 5.6, up from 5.0 6 months ago. This could continue to rise over the next period of time, or could just level off, in alot of cases for no particular reason.

My cardiologist gave me these guidelines and then followed up telling me this by saying that in my case she would begin to discuss surgery when we got to a 6.0 level. Her reasoning being that you don't wait until you allow a certain amount of damage to be done to have surgery (where their would be in that 75mm range).This would put me in a position where there was extrememly minmal damage to my heart and that post surgery I (and the heart) should recover rapidly.

As far as surgery in regards to this and when to have it, and what type of surgey (valve) to go with you are going to get 1000 diffferent responses from 1000 different ppl who have each had their own experiences. Some ppl are going to say certain things are great and the way to go, others will say something else. I DO NOT mean do deminish any of these. My only point is, and this is sort of the hard part, that this really comes down to you doing as much investigation, reading, seeing multiple cardio's and surgeons, and then coming to a decision that is best for your son for not only when to do it but how.

It's important (again, myself not being familair with the guidelines for a child) for you to know what the guidelines are for your son having surgery, and in additon, and more impotantly when to have surgery before any real damage is done. Again, without having the specifics myself, he may be in a position where he just needs to be monitored and could go decades before it needs to be addressed. Lets all hope .

In response to some other posts, I have had a TEE. There really wasnt much to it. I was under for it. It's just a scope down the throat and is more detailed than a echocardiagram. My doctor had additional concerns about my condition upon examining my original echo that were later dismissed after having the TEE. It's also been suggested to me that an MRI or CT scan really are the best and most acurate tests for finding out the "complete" picture. Don't hesitate to push for these. I myself havent gone that rought yet but probably will.

Lastly in regards to the ACE inhibitors isssue. I recently went through this same issue/questiong with my cardiologist (just this past week). ACE inhibitors are generally used for ppl with high blood pressure. Alot of the time ppl with certain heart disease have high blood pressure because of their condition, but NOT NECCESARILY. Upon reading some posts in regards to my own situation I asked my doctor about this and she explained that this had helped some ppl maintain a consistent or even in certain cases lowering the size of the LV, but NOT if blood pressure wasnt directly related to the issue. I have and have always had perfect blood pressure and so for me an ACE inhibitor wouldnt apply at all.

There is one other thing which may or may not help you and I probably should of mentioned before writing my last paragraph. Before going to my cardio w/ questions about ACE, I had my 3 month checkup with her just the week before. She had told me that she had just gotten back from a seminar in Atlanta where one of the top , or in her words "THE top" valve surgeon in the country was speaking. Getting to the point he described their was a small study (122 ppl) done for a drug called PROCARDIA. It had shown a percentage of the trial patients who took this drug maintained their LV size for an extended period of time over another group of ppl in the trial that took what was basically a placebo. Don't have the exact numbers but I do know this, there were NO harmful side effects in the drug overall. The only side effects were the possibility of lowered blood pressure (lightheadedness, dizziness), or swelling in the ankles, both of which were almost non existent. If either are noticed then they just lower the dosage or stop it, but agan no damage done. I've been perscribed it and we'll see in another three months if it has helped when I go back for my checkup. This may be something you want to aquire about and see if it would apply to your sons condition. Not sure with his age, and again not knowing his exact situation.

Feel free to write back to me with questions or concerns either by posting or email - [email protected].

Best of luck to your family and son,
Jay

 

[francie12]

Hi, Jay--Thanks for your very helpful post, coming as it does, from fresh first hand experience. All of our doctors -- at a first-rate teaching hospital -- have the same attitude towards our son's situation: "Forget about it for now" "Don't worry" "It may be a very long time before surgery is needed" etc. I'm the type, however, that needs to know details in order to feel prepared to meet whatever may be coming. In other words thanks to you and everyone on this forum for being a supportive place to get answers without feeling like a neurotic mother! (Also, whenever I've been in the presence of my son's cardiologists Matt has also been there and because of his age I don't like to dwell too much on the negative side of what could happen)
Matt has moderate aortic regurgitation, no stenosis, borderline LV hypertrophy, EKG shows LV hypertrophy, LV size 5.4, up from 5.1 6 mons ago. This is still at "the high limit of normal" for his body surface area. If the guidelines for going to surgery are based on the relation of LV size to body area, I'm thinking they may not be too much diff. for a tallish teenager than for an .
That's a new point of view for me about ACE Inhibitors not being relevant if BP is normal. Seems like if they decrease work load on the heart they would help delay progress of LV hypertrophy regardless--will definately bring this up when discussing ACE inhibs. next appoint. Matt's BP, like yours, is not high.
The Procardia is exciting--don't know if they use it in pediatrics, but will definately find out!
Have you gone to 2nd opinions yet? I'm going to try for an MRI or CT next time--didn't know they gave better results.
Our Drs. have not mentioned "Bicuspid Aortic Valve Disease" as a condition any larger than a leaky valve. Has it been explained to you?
Many thanks, Jay. I'm trying to set up my e-mail so that it's seperate from my son's (he reads everything!). When I do I'll contact you by e-mail. Thanks again, Jane, Matt and family

 

[Oscar61]

Hi francie

Hi francie

Hi Francie,

It sounds as if Matt may be begining to get to that point of "high borderline". Again I'm not sure how teenage parameters differ from an adult but my cardiologist indictated that for me it would be that "high borderline" between 5.6-5.8.

First of all your not neurotic!! All of us to a certain degree, whether it is ourselves, or I can only imagine for our children, want ot have AS MUCH info. to work over before you get the point of having to make a decision. I have had many ppl tell me they think I might be manifesting a slight level of shortness of breath (SOB) (which I have begun to experience over the last few weeks) due to anxiety over reading and investigating so much over that period of time. Maybe their right, maybe their wrong, either way you need to be comfortable that you are doing what you can in advance to be as well prepared as possible.

As far as the ACE inhibitors go, that was my particular response from my cardiologist. As I have said before I am sure you will get varying opinions from what different ppl have been told. The important thing is that you (as I am) are comfortable w/ your Doctors and that you have faith in what they tell you. Do please follow up on the questioning on the Procardia though (also know in generic form as Nifedical). My cardio. seemed very optimistic about atleast trying it with a very low possibility of side affects. If your cardio isnt familair, read up yourself online or ask for him/her to get informed and pursue. Not trying to push anything on you, I'm just hopefull myself. Again, depends on Matt's particulair situation (age, heart, etc.)

Haven't gone for second opinion yet but I'm at that point. Im just begining to make the phone calls to do just that. I have full faith ( and personally like) my Cardiologist. But it never hurts to get another opinion. And if that opinion differs from the original, get a third and go with the two that align (that was actually suggested by my cardio when I mentoned at some pt. I was going to seek a 2nd opion just for a point of reference).

Do push for the MRI or CT scan. Even since I posted you last I have read and been informed again that they both are much more specific. I am going to do the same this upcoming week. Difference in the two I have been told is that the CT involves much more X-Ray exposure, so might try for the MRI. I think the real issue as we all know is the insurance companies and a determination of when you actually "need" (according to the docs) one or the other.....so again be aggresive.

Lastly, in regards to asking if "bicuspid aortic valve disease" was "larger" than a leaky valve I think I can answer. I assume by "larger" you mean "worse"?? To the best of my knowledge it isnt a matter of "worse" or "better". What I mean is that they can be one in the same. Bicus. Aor. Val. Dis. is or can be a leaky valve. It can also be stenosis (which of course is the opposite, the valve is closing to much and not letting blood through). In my case my cardiologist cant actually tell if I have a bicuspid valve that has been damged and calcified, or if I was born with a tricuspid valve and ended up having a problem. Either way for me it doesnt matter, it leaks! But you have said that Matt has regurtation which is "leaky", so the only issue is how leaky it is (ejection fraction). Another important number in all of this. The lower the ejection fraction the worse, BUT TAKE THAT IN CONTEXT. What I mean AGAIN is that I dont know for a "normal" teenager what his ejection fraction should be (what the "range" should be better put). Your card. can tell you that or you may already be familair.

I hope I explained myself clearly on that last issue. Went round and round there a little bit . Get back to me when you can, and if you want to email me directly it's [email protected].

Stay in touch and happy holidays to you all,
Jay

 

[ALCapshaw2]

Francie wrote: "Matt has moderate aortic regurgitation, no stenosis, borderline LV hypertrophy, EKG shows LV hypertrophy, LV size 5.4, up from 5.1 6 mons ago. This is still at "the high limit of normal" for his body surface area."

Here's something to help put those 'medical modifiers' in perspective regarding degrees of severity:

NO / None
Trace
Mild
Moderate
Severe
Critical

Generally, at the Moderate level, regular monitoring is called for. Watch not only for passing some predetermined guideline number in dimensions, but look for CHANGES that may still be below the guideline for intervention.

At this level, your son's doctors may be right on target that it will be some time before intervention is called for. BUT, you are absolutely correct in wanting to be more and better informed on his status and the benefit / risk tradeoffs for intervention. Getting that information will allow you to make a truly "informed decision" when the time comes. Keep up the good work!

'AL'

 

[Arlyss]

Regarding Bicuspid Aortic Valve Disease in the Young

Regarding Bicuspid Aortic Valve Disease in the Young

It is not unusual to find that the focus is on the heart valve, and not the aorta. There is a medical paper from 1998 that I found very helpful, written by a cardiologist in Pennsylvania. The abstract is online, and here is the link. http://www.clinicalcardiology.org/briefs/9806briefs/cc21-439.html
This paper is about two young people, both male, who were his patients. One had his BAV replaced, the other still had his BAV, and they developed "life-threatening aneurysm or disection" of their aorta. I have the entire paper, and it gives numerous references and makes the case that those with bicuspid aortic valve should be monitored, similar to those with Marfan's syndrome. This is a good paper to discuss with one's medical care givers. The full text of the paper can be obtained at a medical library or by writing to Dr. Burks.

Also, regarding MRI and CT, CT uses x-rays, and if possible it is best to avoid x-ray exposure and its cumulative affects over one's life. MRI will give a very good image of the entire aorta, and some centers now have cardiac MRA which gives an excellent view of the heart and valve. The cardiac MRA and aortic MRI can be done in the same session. Dr. Burks' article mentions that echocardiograms can be used, which is certainly true. However, the technician must be sure to "see" not just the root, but the ascending aorta, and this may not always be the case.

Hope this helps.

Arlyss

 

[francie12]

Hi, Arlyss--I've been wanting to thank you personally for your timely information. I've been waiting for a window of time big enough to do justice to finding and studing the links you suggested. Since I prefer to do my research when my son is not around, it's challenging! I keep discovering how much more I have to learn--the more you know, the more you know you don't know! Up until recently I've been proceeding on the assumption that BAV is a straight-forward plumbing problem--replace the valve, fix the problem. I think my next step is to get a more detailed report of Matt's echos. Since the aorta was not mentioned in the paper that I received, I had assumed it was normal, but I'd like to know for sure. Aryss, there is a website that I would like to have your opinion about. It's called the Bicuspid Aortic Disease Foundation. I have to admit that it confused and worried me. It speaks of the specific valve problem as being only one part of a bigger picture in BAVD, including tissue diease, as you say, but also mentioning remoter issues, even near-sightedness! I was wondering what you think of this. In reading the histories of others on this forum and other places, it does seem that for many people, the problem is limited to the valve alone. I can't believe how generous you all are with your time and attention. Again, all my thanks. Jane

 

[francie12]

Hi, Arlyss--Sorry, this is the correct name-- "Bicuspid Aortic Foundation" Email address: www.bicuspidfoundation.com Thanks, Jane

 

[medtronic of borg]

Matt

Matt

Since Matts LV is at max, I would not gamble. Take the meds. But more to the point have they really addressed the enlargement (cardiomyopothy) with you. I think that is more to the point. If the valve is bad enough to be causing CM it needs addressing. Ask them about surgical intervention. I tend to lean toward getting it done. I had three cardiac arrests at the age he is. Dam near killed me. Was definately the worst thing I have ever gone through. Don't be afraid to ask them and us lots of ?s you sound under informed right now. I have lived with heart troubles my entire life. If Matt would like to write me in privet he may. Just click on my name above.,And PM me.
Medtronic of Borg

 

[bethanne]

HI Jane,
If you preview the about us info on the site you mentioned you will find that Arlyss is listed there... She is a wealth of information and being informed is a great gift you can give your son.

It can be overwhelming, there is a lot of information out there. Last Spring I found a new cardiologist, by chance I was given her name and sought out a second opinion. My previous dr. was a well respected doctor and I liked him a alot. However after seeing the second opinion I realized the difference. My current doctor (yes I changed) is younger and follows the newer train of thought regarding the link of BAV and connective tissue disorder. Upon my first visit she asked about my aortic root. I had been to several cardiologist over the past 7 years and she was the first to raise the question. An MRI gave an excellent picture and confirmed her suspicion of a dilated ascending aorta. Now my 6 month checkups will include this as well.

I say this to emphasize how important having a good doctor that you have confidence in. Not just one that has good bed side manners. But one that will take the time to truly explain all the details to you.

I am currently taking the Procardia as well and have had good results. My AI has improved and although I have slightly enlarged LV, probably caused from the higher AI level/and high blood pressure prior to the Procardia.

My thoughts are to learn all you can to help you ask the questions you need to ask to be sure you have the best doctor for your son. Speak loud enough to be heard as well. But at some point you have to have confidence in your doctors. If you don't keep searching until you are...

Copies of test results are always a good idea to have.

Although I am still in the waiting room and may be for a while, I liked to long on and check up on everyone. Your post caught my eye...

May you find peace during this time of discovery...

bethanne