losartan for marfan syndrome

ve recently had an echocardiogram that indicated that I had an dilatation of the aortic root. In investigating this online, I came across Marfan Syndrome. I appear to have a number of the symptoms of Marfan including the problem with the aorta noted above, as well as sleep apnea, an astigmatism in my eye, and early signs of emphysema (airtrapping indicated on a PFT test) at only 41 years of age.

We took him back for a check up and his cardiologist told us what my son has is rare and mainly seen in Marfan syndrome. His ascending aorta is a 2.9, at what point would surgery need to be done? He is 51 pounds. He also goes for a second opinion at Vanderbilt on May 12.

My 21-year old son was diagnosed with Marfan Syndrome at age 6. He has been on beta-blockers since that time. During his childhood and teen years, he had severe physical restrictions and had MVP as well as a dialated right ascending aorta. At this point in his life, the only symptom he sees an enlarge aortic root. It is enlarged at just under 4 cm. He has no joint pain. His breast bone is only slightly protruded. He does have sublixated lenses, but his vision is just fine with glasses.

Our son has Marfan Syndrome. A recent echocardiogram showed aortic annulus of 34 mm and a sinus of Valsalva of 48 mm, sinotubular junction 34 mm, and ascending 31 mm. Doctor said our son is near the threshold at which aortic root replacement should be considered. On various forums I've seen a 5.0 cm listed as a general number for aortic replacement. Of the measurements I listed from our son's test, which measurement is the one most often referred to in considering a threshold?

Hi ajr81, Be sure to talk to your cardiologist about the drugs called ARBs. Please visit www.marfanlife.net, even if you don't have Marfan Syndrome, and check the thread on "losartan.

My son had a VSD operation at age 3. It was not then that the aorto was slightly large, or oblongated. Recent visits to the cardiologists suggest it's still mildly dialated at 3.6cm. He's seen a geneticist for marfan, and he doesn't meet the criteria but is near the spectrum. He's 13 now. If his aorta was noted as being large during his operation, could the size of it now be because it's been large since birth?

I understand that the eyes are very rich in fibrillin. I have some sort of connective tissue problem (not Marfan, but perhaps MASS syndrome), and I began using ARBs (valsartan) a few years ago, when this research first debuted. I graduated to a maximal dose (320mg/valsartan/day) about a year and a half ago.

There is some preliminary research into comparing atenolol versus losartan in the prevention of aortic root dilation in patients with Marfan syndrome through the Pediatric Heart Network (sponsored by the NIH). Though your son doesn’t have Marfan syndrome, there are some similarities in the aortic dilation that occurs between that and bicuspid aortic valve that may also respond to these medications.

My 19 month old daughter has a pigeon chest, according to her doctor, and is very tall for her age. The doctor told me that she has Marfan syndrome and I was wondering if this is true. Could she have pigeon chest and not have Marfan syndrome? Thank you for your time and assistance with my question.

The gentleman who has done my last two echos is about to begin a research project into the effects of losartan on aortic root dilation for non-marfan patients and will be the only person taking the measurements in order to maintain consistent method. Yes, I do have subtle Marfan signs, as well as, and possibly causing, obstructive sleep apnea(CPAP'd).

It is important to have a complete exam specific for Marfan syndrome to completely rule out or diagnose the condition. A medical geneticist would be the appropriate type of physician to perform a complete exam, so it is good to hear that you will be seeing a geneticist. As you know, Marfan syndrome is a connective tissue disorder that affects many parts of the body including the eyes, skeleton, heart, and blood vessels.

, do you mean that your nearsighedness is the only sign of Marfan Syndrome? In this case, you do not have Marfan Syndrome. First, do a web search for Marfan Syndrome (start with wikipedia) and educate yourself about that condition. Whether you have it or not is critical to any suggestions regarding your vision. Second, -6 myopia is only moderate myopia. People with Marfan Syndrome usually have extremely high prescriptions, often with high astigmatism. So this doesn't fit either.

So I have marfan syndrome which makes me a high risk mom. Here is a brief explanation of Marfan's syndrome since its not very common; it affects all the connective tissues in my body most importantly my blood vessels and more specifically my aorta. During childbirth my aorta is at risk of tearing which is potentially fatal and for the the birth of my first I had to vaginally deliver in the cardiac ICU in case they had to do surgery.

So with absolutely no family history, me being normal height (probably a little below average) and weight for my age, normal arm span compared to height, no pectus excavatum, no stretch marks, no dislocated lens, or any other physical characteristics besides the high arch palate and possible positive thumb/wrist signs, it doesn't seem like I meet the criteria for Marfan Syndrome on the National Marfan Syndrome website. There is still a possibility that I can have it?

Hello maggie439, The following information would be of help to you. Marfan syndrome is named after Antoine Marfan, the French pediatrician who first described the condition in 1896 after noticing striking features in a 5 year old girl. Marfan syndrome is caused by mutations in the FBN1 gene on chromosome 15,[9] which encodes a glycoprotein called fibrillin-1, a component of the extracellular matrix.

Marfan syndrome is a genetic condition that affects the connective tissue in the human body. Connective tissues are proteins that support skin, bones, blood vessels and other organs. Marfan syndrome symptoms can be mild to severe. The symptoms vary widely in severity, timing of onset, and rate of progression. Marfan syndrome is inherited in an autosomal dominant manner, which means that having a single mutation in the FBN1 gene is sufficient to cause the condition.

Hi Sue, Please take a moment to click on my screen name to view my many prior posts on this topic. Also visit www. marfanlife .net/bb3 (remove the spaces; I put them in there so that this website would let me display the address) and look at the "Pharmacy" section for extensive discussion on this topic. My understanding is that it would be OK for a teenager to be on this type of drug, especially one who is only 3 years from being an adult.

He has many of the features of marfan syndrome, which is why we had his echo. We are soon to see a cardiologist who specializes in cardiovascular mri's. What questions should we ask this specialist and what could cause such symptoms in someone as young as my son?

There is some preliminary research looking at some medications for aortic dilation in Marfan syndrome. It is unclear if thsee would work in BAV patients, although the mechanism of dilation is felt to be similar. You may discuss this with your cardiologist for further details.

poor eye sight his waiting on genetic testing for marfan syndrome he has started on losartan tablets .....

My 10 yr old son has just recently diagnosed with Marfan Syndrome. His aeortic ventrical is enlarged mild to moderate and the right side of his heart is considerably bigger than the left. His doctor has referred to it as enlarged. He has a resting heart rate of about 108. I was told that the right side of the heart being much bigger than the left is a different disorder than Marfan. What is the name for it?

It is caused by defects in a gene called fibrillin-1 which is the building block for elastic tissue in the body. In most cases, Marfan syndrome is inherited but up to 30% of cases have no family history. Check with your doctor for proper evaluation. Regular prenatal consult is important. Take care and do keep us posted.

the 2010 Journal of American College of Cardiology Guidelines for the Diagnosis and Management of Patients with Thoracic Aortic Disease recommend annual imaging in patients with Marfan Syndrome who are at high risk for progressive dilation and aortic dissection.

Losartan for marfan syndrome

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