Sews2Reap

When diagnosed with a syndrome, you quickly learn it a a big umbrella with lots of conditions under it. This is how it looks for my son.  We have found excellent care, and a good mix of prescriptions and essential oils to keep him happy and healthy.  He has more issues on the inside where they can't be seen. His external scars are minimal compared to what is going on inside physically. Currently, our favorite essential oil is Cedarwood . It helps him with pain, mood, and sleep. We often combine it with Vetiver , especially during school, when he has trouble concentrating through the pain. Another oil we use daily is Clove . It helps with the neuralgia electric shock pain because of its wonderful natural numbing effect. Parry Romberg kids are some of the toughest you will meet!  They have known chronic pain way too early in life. 

I will praise Him in the storm. The storm front is on my door step lately.  Our house is peaceful, full of love, and kindness and true safe place in this crazy world. But the storm still rages.   Unfortunately, when the weather changes, like a cold front moving through, my son's headaches are barely manageable.  Fall is on the way, we have had a few weather fronts move through and the pain level for my kiddo has been high and difficult.  We had been enjoying a day or two at a time of almost no pain, but now we are thankful for an hour or two with manageable pain.  I know the pain storm will pass, but it is hard to listen to it rage not know how long or intense it will be.  One thing we do is list things we are thankful for, a way to distract from the pain and feel hope in our hearts.  A hard Eucharisteo as Ann Voscamp, author of "1000 Gifts" calls it. My son will list his friends, toys, comic books, puppy, and so on.  Things that give him joy, and can even make hi

This is how we do it every morning. I will add our night-time protocol later. Nights are just difficult.  Since doing the 'happy oils' my son copes better with the pain.  He says he even when he still hurts it doesn't bother him as much. He can play, do school, and be a goof.  I'm not a doctor. DO NOT stop medications with out your doctors help. Always check for drug interactions. This helped our family, maybe it will help yours. 

So much has happened since I posted over 2 years ago. My youngest child, now 11, has been actively battling with a rare health condition.  He was diagnosed when 5, but we knew something was up by 2 1/2.  It just took over 2 years to find a doctor who knew what his condition was.   If you meet us, most people would never know anything was going on.  I'm thankful for that and have been pretty quiet about his condition because I don't want him treated differently or stigmatized in some way. However, our last doctors appointment gave me much to think about.  One of the specialists who sees our son recommended I "put myself out there." So what is his condition? Parry Romberg Syndrome.  He won't die from it, but he does have to learn to live with it. Every person with PRS has a different  story.  Some have seizures, others only facial atrophy.  Most will have headaches of some degree and may develop anxiety, or depression.  A few learning troubles. It can effect