Sews2Reap

Here is the history -  (if you want to skip this scroll down to the next bolded section) I don't post a lot about my son's medical condition. He was diagnosed with Parry Romberg Syndrome at 5 years old. I knew something was wrong starting at 2 1/2. It took over two years and lots of doctors to get a diagnosis and start treatment.  Because PRS is a rare disease, ( Click the link to learn more about  Parry Romberg Syndrome .) there hasn't been much research or treatment history for this condition. We were so fortunate to find a doctor who happened to read an article about it, start some research and figure it out.  Beginning treatment at age 5 slowed the atrophy and scarring that characterizes most PRS patients. His symptoms and pain went into remission at age 5 with the treatment of steroids and low dose chemo. He went for nearly 4 years with check-ups and no medication. We were so thankful! The remission ended at when he was 9 with a stroke-like episode out ...

I have been the caregiver for a child with a rare condition for over  13 years. Recently, I spent some time caregiving for my mom after major surgery. Both of these experiences have made me aware of how important it is to have a medical plan whether you are the caregiver or the one needing some help. In the case of temporary caregiving. My mom had printed out all of her medications and gathered them together so we could help with dosing during recovery. Post surgery, she was unable to help with when she took what med, and what they were for. I did have the release papers from the hospital and found they were less helpful than I had hoped. In the end, we made a chart for her maintenance medications and supplements and a separate one for the post-op meds. It took some time researching what the meds were for, if any had interactions with the post-op meds, and if they had to be taken separately. I included the time of day to take, amou...

disclaimer: I am not a medical professional. I am sharing personal experiences that have helped my family and I hope will help others.  Autoimmunity is becoming nearly epidemic.  Our own bodies are declaring civil war. It can be genetics, lifestyle, or a complete mystery as to why someone ends up with an autoimmune diagnosis.  At our house, I and my son both have an autoimmune disorder. Mine is inherited, it is Hoshimotos Thyroiditis. It is treatable and not too hard to live with for me. Click here to read my post on how I help my own body find balance again with natural supplements.  My son's is not inherited. It is a rare condition called Parry Romberg Syndrome (PRS). From the outside, he looks like any other teen boy. On the inside, he has scarring, leaking vessels, nerves that have been attacked and never stop sending pain signals (Trigeminal Neuralgia, or TN).   His condition is harder to treat. We see many specialists...

It is has been quite a while since I have updated on my son's journey with Perry Romberg (PRS) and Trigeminal Neuralgia (TN). Honestly, it is easier not to talk about it. Pain is the shadow over his childhood. I am a positive person and I tend to only talk about the things that uplift. No one likes being around the person who always talks about their problems. As a rule, I try to talk about it only when asked. If someone asks my son how he's doing, he always says "Good." No matter how he feels. The answer is good.  It's easier.  So here is where we are today. He is almost 14, tall, thinning out, smart, sassy at times, quiet mostly, with a tendency towards kindness, gentleness, and dark humor. He's creative, smart sensitive, handsome. All the stuff moms always say.  Until a two weeks ago he hurt every day. Usually all day. The best medicine we have found is in his friendships. He smiles more, laughs constantly, and seems to be able to put the pa...