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Showing posts with the label vasculitis

Super Supplements!

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We have been on a journey to wellness for some years now. It isn't  a quick fix but a lifetime of effort!  These are supplements we use nearly every day in our house.                   Supplements used by the Headache Kid : When my son had a serious reaction to his pain medication ( the first one that actually helped ) we decided to all we could naturally to improve his life. I have written in the past about changing our family diet and seeing great improvement. This is part 2 of that effort. The first thing we did was add MSM. I already had Sulfurzyme which had been beneficial for my own health. He takes one capsule 3 times a day. Some days he takes more if he is really struggling with inflammation.  I had read so many articles about omega 3 and brain health. Then found out boys often need more omega 3 as well. It has to do with testosterone not being a fat carrier and estrogen is.  Here is one...

Have a plan and be ready to change it!

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My son is going to his first sleep over in over a year.  Since his pain has grown and become unpredictable and his nights have been some of his worst times, sleepovers have been impossible.  I am excited, and so is he, for this simple childhood event to be back in his life! This is a trial run.  He will only be a few miles away and with people we trust completely.  It's not so simple though.  Not only do we pack his clothes but also his medications.  Each dose in its own baggie with instructions.   This is just to get him through the night.  So here is the biggest challenge for me.  It isn't letting him go - I so want him to have every "normal" good childhood experience he can.  It is trying not to overwhelm the family in whose care he will be. Not sending pages of detailed instructions with a timeline and explanations for each medication.  I know they will call if there is any question about anything.  I keep telling m...

What Parry Romberg looks like at our house

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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.