Category Archives: heart defect

Red Man Syndrome……or not?

When Sam had his open heart surgery he got vancomyocin for his peri-operative antibiotic.  When you have surgery you always get an antibiotic ward off any surgical infection. There are 2 they usually pick from. One is ancef which is in a family that is closely related to penicillins (which Sam is highly allergic to) and can lead to cross reactions. For this reason the surgeon picked to use vancomyocin. No chance of reaction….or so he thought!Sam got the first dose during surgery. The second dose was given 8 hours later in the PICU and about 1/2 way thru he looked like this:

Sam’s vanco reaction

They called it not an allergic reaction but an adverse reaction called Red Man Syndrome (RMS) which can happen with vanco. But I had a patient with that once and Sam looked nothing like that patient. If you look at the pic his eyes and lips are swollen. He got better with benadryl. If it is RMS then they can give it again just with benadryl before the dose and then run it slower. So, they did 8 hours later and he this time just got 6-8 hives on his face.
I showed the pic yesterday to Sam’s GI and she agreed with me that it was an allergic reaction! I told her I was considering taking him to a pediatric allergist (appt on Dec 17) and talking it all over with him. She agreed that was a great idea! So, I guess that’s the next step for my little antibiotic allergic one. Uggh! Does it ever end!!!!!

Another year down for Sam and his heart

Samuel saw the pediatric cardiologist on 8/21 and he was cleared for another year!  He said that his aortic valve is slightly leaky but that it is nice and stable.  He also said that the pressures across the membrane (his defect is a subaortic membrane or subaortic stenosis) are also stable when compared to last year.  What wonderful news!!

Samuel’s echocardiogram

Samuel has a heart defect called a subaortic membrane or subaortic stenosis.  It was discovered just before his second birthday.  It is pretty rare and is one of the more mild defects to have.  Unfortunately it is a huge grey area though as he could outgrow it or he could need surgery to have it repaired/removed.  The reason they don’t just generally remove the extra piece of tissue is that it tends to grow back!!

In this defect there is extra tissue just below the aortic valve in the left ventricle that causes narrowing or obstruction (hence stenosis) that the heart must overcome to pump blood into the body.  This makes the heart work harder than it should have to.  It is detected by hearing a murmur as the blood travels over the stenotic area into the aorta.

So for now it is followed yearly by a pediatric cardiologist by echocardiogram and office visit.  He had his echo last week.  I really thought it would be a horrible experience since it takes about 40 minutes and he is a kid who just cannot hold himself still!!  But he did beautifully!  Held still the entire time and was just starting to get wiggly when it was ending.

His appt with the cardiologist is August 20th.

Here he is having it done:

and here is the actual picture of his heart:

Benjamin & Samuel’s stories

This blog, of course, cannot only be about Jennifer!!  I did say in my profile you’d hear about Ben’s ears and Sam’s allergies and heart.  So, I figure I’d better give you the background on those so you know it when you get the updates.  

Benjamin had his first ear infection at 5 months old along with a bout of bronchiolitis.  He had to do breathing treatments then too.  He got better and we figured it was just a winter bug and all was over.  Unfortunately, that was just the beginning for him and his ears.  He had another ear infection at 7 months old.  The poor thing would be inconsolable with these ear infections too.  This started a pattern of ear infection leading to an antibiotic then a recurrance of the ear infection about 2 weeks later.  

After 4 ear infections in a row like this he was put on a preventative antibiotic that he took daily to prevent further ear infections to get him to summer when ear infections are supposed to go away.  All the while he also had a chronic yellow-green runny nose.  This would also clear up with each course of antibiotics and restart once they were finished.  He stayed on this daily preventative antibiotic for about 6 weeks.  Within 4 days of being taken off it his nose started again and within 8 days he had a raging ear infection with a high fever.  At this point he was sent to an ENT doctor.  

At 11 months old he had his first surgery where he had a set of ear tubes placed and he had his adenoids taken out.  The adenoids were removed in hopes that they were harboring the bacteria that was causing the chronic runny  nose that was then leading to the chronic ear infections.  His nose did continue to run for awhile even after the adenoids were removed and he was tried on several allergy medicines without success.  Eventually after his second birthday it finally just spontaneously stopped.  He continued to get ear infections even with the ear tubes but he was a different child with an ear infection at this point.  No longer was he in terrible pain and no longer did we have to do antibiotics by mouth.  Now just a few drops twice daily into his ears.  What a welcome relief.  

We were lucky that he was one of the kids that the tubes stayed in instead of them falling out quickly.  Though this luck later turned into them really staying in!!  At 3 1/2 they had to be surgically removed!!  This was due to if they are in too long it can lead to scarring and perm hearing loss.  At this point it was noticed that his tonsils were quite large too.  Feeling that eventually he would have to have them removed due to some sleep apnea issues he was scheduled for surgery again.  The ear tubes were removed and the tonsils were removed. He had a rough time for about a week with tons of pain, thrush, refusing to eat and drink, and some nerve issues in his jaw but then went on to recover quite well.  

In Ben’s style about 4 weeks later he got an ear infection.  This was quickly followed by a second one so a tube was placed again.  Unfortunately, only the ear that got the infection had healed from the first set of tubes so only one tube was able to be placed.  Several months later the second ear drum finally healed and sure enough (just as Mom had predicted) he got an ear infection in it.  Knowing his history we didn’t wait and immediately scheduled him for a tube in that ear too.  So he is now 4 1/2 and on his second set of ear tubes and doing quite nicely.  Hopefully this will be his last.  Hopefully this set will stay in as long as his first set did (but then fall out on their own!!) and by then his ears will have grown enough to be able to drain on their own without more infections.  Only time will tell I guess.

Samuel is Jennifer’s twin brother.  He had reflux as a baby too but fortunately outgrew it by 8 1/2 months old.  He spent some time on prevacid too but didn’t have nearly as hard of a time as Jennifer had with it.  When Sam was born he had a heart murmur.  Being 5 weeks early this wasn’t entirely unexpected but it wasn’t heard by the pediatrician on his first day of life but was heard on the second day.  To just be safe they did an ultrasound of his heart.  It showed that his foramen ovale was still open.  This is common in preemies and we were told it should close in his first few months. 

 He was hospitalized along with Jennifer (full story in last entry under Jen’s story) at 3 weeks old and they were both given another heart ultrasound since they both still had murmurs and fevers.  Both still showed patent foramen ovales.  Again, ok.  At each well check up the pediatrician and I would talk about their murmurs and Jennifer had outgrown hers somewhere between 4-6 months old.  Sam never did.  

Just prior to his second birthday we saw a different pediatrician for a sick visit as I thought he had an ear infection.  He looked in his ears and said they looked fine but then spent a long time listening to his chest and then referring back to his chart.  At that point I knew something was coming!!  He said that even if he still had the patent foramen ovale we shouldn’t still hear the murmur from it.  He then wanted him to have another heart ultrasound.  This time, however, he wanted a pediatric cardiologist to read it.  The others hadn’t been read by one.  He made it clear that he didn’t want Sam seen by the cardiologist, just that he wanted his ultrasound read by him.  We had the ultrasound done about a week later on a Thursday and that Friday afternoon one of the other pediatricians from the office called and said that the cardiologist’s office would be calling to set up an appointment for Sam to be seen by the cardiologist sometime in the next month.  And I was like, “what, I thought he wasn’t supposed to be seen by the cardiologist?”

Tuns out he has a condition called a subaortic membrane or subaortic stenosis.  It is pretty rare but it is a heart defect and needs to be followed by a cardiologist.  We saw the pediatric cardiologist in August 2007, the same month he turned 2.  He actually told us that this isn’t usually diagnosed until between ages 2-3 as this membrane needs time to grow and cannot be picked up until it grows big enough to be seen.  For now he isn’t symptomatic with it so he just needs to be followed yearly with heart ultrasounds and visits to the cardiologist.  If he were to ever become symptomatic then he would need heart surgery to remove the membrane.  They don’t routinely just do surgery to remove them because of several reasons 1) it is a big surgery that comes with risks and 2) the membrane tends to grow back.  

Now, for Sam’s allergies.  This one is easy!!  He had the same chronic runny nose like Ben but minus the ear infections so I kinda figured he wouldn’t really respond to any allergy meds either and put it off awhile.  But after going through tons of boxes of kleenex in a month I took him to the pediatrician.  She suggested claritin and after 2 days on that I have barely seen anything come from his nose again!! Yipee!!  So, he obviously has some sort of environmental allergy.  Hopefully it is only to pollen and not dust and dust mites like his momma!!  Though his nose started much sooner than pollen season so only time will tell I guess.