This whole growth thing with Henry has been eating at me. I just can’t quit thinking about it. Basically, my big concern is that if there IS something wrong (and he’s not just little), and he has “failure to thrive” (which by the way, is a HUGE blow to a mama’s ego!)…if you catch it early enough, you can fix it. But, if it goes on too long, it can cause permanent long term damage (both mentally and physically). Now, don’t get me wrong, I’m TOTALLY speculating based on internet research and I’m not saying that he does have Failure to Thrive…I’m just saying that IF he DID…or if he developed it…I want to know about it NOW.
So, as I continued with my web researches, I stumbled upon the website for Boston Children’s Hospital, who are the pioneers in balloon valvuplasty. They had a link that said “Get a Second Opinion”…which I thought was kind of odd that you can just email them…but I thought, hey, what the heck? Anyway, long story short, I emailed one of the cardiologists just to get his take on Henry’s growth and to ask if doing the surgery sooner than later would be a bad thing. My thoughts are that if he has to have surgery ANYWAY, let’s do it now, get it over with…and see how his growth goes. If he doesn’t grow, then we know it’s something else…and focus our energies elsewhere.
Anyway, I emailed them and got a response this morning! Less than 12 hours later! Here’s his response:
Jeannett
I am one of the interventional cardiologists at Children’s Hospital, and received your email message from Dr. Juraszek.
You mentioned that the cardiologists are classifying your son’s PS as moderate/severe. We measure the severity of obstruction in pressure gradients (amount of extra pressure the heart must generate to push blood across the stenotic valve), and number they measure on the echocardiogram would help me to understand the severity of his PS better (it is probably somewhere between 45-70 mm Hg).
Regarding the issue of growth, in all honesty, it can be difficult to know whether PS contributes to delayed growth. Some people will tell you one thing, others another, but there is no really rigorous data that answers this question clearly. You are right that taking it out of the equation by treating the PS may help to understand what it going on, and may actually help improve his growth. There is no downside to doing a valve dilation at his age and size, unless the severity of obstruction is too minor. If you can get me the number, or better yet a copy of the echocardiogram, we could make a clearer recommendation.
Thanks for inquiring.
Anyway, I’m JAZZED that it looks like doing surgery now isn’t a bad idea and I’m going to lobby for it with my ped and cardiologist. I’m just excited that I’m getting some answers and that I’m hopefully on my way to figuring out this kid! I don’t care if it turns out that he’s just a little dude…I just want to know that that’s what it is…or isn’t. I’d hate to keep waiting and waiting and then find out that we waited too long!
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A friend of mine was told her daughter had failure to thrive at her 1 year check up. She has always been little, her mom and dad are also petite. Anyway, she recently changed doctors and her new doc isn’t concerned about her being small. All that to say, different doctors see things from different perspectives. I am glad you are being proactive and getting a second opinion.
SO glad you are able to get a second opinion!!! it is SO HARD not knowing if, or what, is wrong with your child. i agree, it’s less that he’s small, more just worrying if there’s a bad REASON he’s small.
biniam was diagnosed with failure to thrive, anna used to be very small for her age and kaitlyn fell off her growth curve for awhile. they all seem to be thriving just fine however. :)
you guys will get answers, and get through this. and in the meantime, henry seems darn smart and like he’s developing perfectly fine. AND he’s really cute, too. :)
Hi Jeanett (and Andy),
It is fun reading your blog to keep up on what’s going on with you. Definitely good job getting the 2nd opinion since doctors continue to PRACTICE medicine.
Nancy Rogerswillettgmail.com
Hi Jeanett (and Andy),
It is fun reading your blog to keep up on what’s going on with you. Definitely good job getting the 2nd opinion since doctors continue to PRACTICE medicine.
Nancy Rogerswillett
Hi Jeanett (and Andy),
It is fun reading your blog to keep up on what’s going on with you. Definitely good job getting the 2nd opinion since doctors continue to PRACTICE medicine.
Nancy Rogerswillettgmail.com
Hi Jeanett (and Andy),
It is fun reading your blog to keep up on what’s going on with you. Definitely good job getting the 2nd opinion since doctors continue to PRACTICE medicine.
Nancy Rogers