Friday, November 18, 2011

The heart condition

Melina was diagnosed last year with an obscure and rare heart condition - postural orthostatic tachycardia syndrome. (POTS)

This was a surprise to us - we actually went to see the cardiologist last year because she had an abnormal EKG and had had several near-fainting episodes. We followed the non-drug guidelines the cardiologist gave - increase salt intake, eat and drink every 2 hours, and be careful when changing positions.  Oh, and 99% of all teens grow out of it by age 16-18.  And this condition very rarely get worse...

see where I'm going with this?

She is worse.  It started with a constant headache.  After 5 days, and a trip to the ER (with injections that didn't work at all for pain), and a trip to our doctor, we have now spent the last 6 weeks in and out of the cardiologist (not a pediatric one, but an adult dr. who agreed to see Melina because of her age and he specializes in these types of heart conditions), neurologist, and our general doctor trying to fix this. 

And she has missed almost 11 days of school (fortunately, though this is now labeled "chronic" for the school (and district) and all this appointments and sick days do not count towards absences for school).  Not to mention church and time with friends and family.

I will save you all the medical mumbo-jumbo and testing results.  In short, the severe, constant headache is caused by the extreme low blood pressure and the high heart rate.  The cardiologist started her on medication to help treat the blood pressure and heart rate issues, and the neurologist has started her on a medication regimen to get rid of the headaches.  And our doctor sees her regularly, in order to keep track of all this - because she likes him best and trusts him and talks with him about how she feels.  (plus side - his visits cost less!)

This has been frustrating for all of us.  Melina because she is so sick at times.  The symptoms for POTS are long - and she has a lot of them.  Her head is constantly hurting.  The new medications are not fun and must be taken - they cannot be missed - thus leading to new habits to develop. Us, because this time, we can't fix it as parents.  We have to trust and get the doctors to help us.  And her siblings, because Melina just isn't herself 100% any more.

Getting a cold (or any other illness) this past week, caused her to be down and out for 3 days - because stress, illness, and physical pain makes POTS worse. 

And the doctors can't guarantee that she will "grow" out of this now. 

And that sucks worse of all.

1 comment:

  1. I'm so sorry - you are all in my thoughts...

    ReplyDelete