Empowering Families to Get Answers
It’s one of those mornings. The one where you were woken up by your child complaining of symptoms from their disorder. Perhaps they didn’t wake you, but you see their disorder is flaring and it’s going to be a tough day (or week). What do we do as parents when our children’s diseases flare? IfRead more about Tips to Help Your Child Succeed at School With Disorder Flares[…]
If your child suffers from an autoimmune or autoinflammatory disorder, at some point the use of prednisolone (or prednisone) will come up. Are there negative consequences of choosing this method of treatment or not? How do we decide what to do? What is prednisone (or prednisolone) & why is it used? Prednisone is aRead more about What to Consider When Choosing to Take Prednisone[…]
Talking to other parents. It’s one of the things as a parent that can lead to great pleasure. You find out your child isn’t actually that different than other children. You feel relief in the fact that you are not alone. However, there are conversations that lead to the opposite feeling when we areRead more about What I Learned From Talking to Other Parents About My Child’s Disorder[…]
Joint pain. It’s one of the most common signs of autoinflammatory conditions and autoimmune conditions. But what happens inside of our body with these two conditions is very different. The distinction between autoinflammatory and autoimmunity is more recent. Autoinflammatory conditions are new to science and medicine. They are being discovered more rapidly today. Autoimmune conditions have been recognizedRead more about Autoimmunity and Autoinflammatory Disorders – Which does your child have?[…]
Missing life or living life… that’s where we are at in this household. When do we medicate, and when don’t we medicate. Between myself, and my lupus control, and Bubba’s PFAPA it’s a constant battle to determine when and how much medication we take. I have been trying to determine the right amounts, times perRead more about Living Life[…]
That’s Life… It’s been awhile since I have been able to post anything. Life has been happening… and this week has been a doozey. Cancer My grandmother lost a battle to cancer this week and died at the age of 84. It’s hard to believe that a woman with such strength, drive and dedication toRead more about That’s Life[…]
The Diagnosis Although we were a bit hesitant to go to yet another doctor appointment for Bubba’s fever, we now have a definitive answer. Bubba has PFAPA – there was no question in the doctor’s mind of the diagnosis. The doctor was also certain Bubba didn’t have any other type of rheumatological condition or disease,Read more about Definetely Not Crazy[…]
WARNING NOTE: Usually I focus on educational information, intermixed with my personal stories, however, this post is solely a personal experience and commentary. Although you may find it educational, it was not created using a source, other than my personal feelings. A Mild Episode The beginning… Late afternoon, when changing Bubba’s diaper I noticed heRead more about A Glimpse Into An Episode[…]
Unlike how fun it was in middle school and elementary school to play “pass it on,” “passing it on” in genetics from yourself to a child is the last thing you ever want to hear has happened. Although my son, let’s call him Bubba, hasn’t been officially diagnosed yet, the doctors are looking at aRead more about Passing It On[…]
There is nothing more difficult than making it through a high fever episode with your child. Ours suffers for five days in a row, every 23 days, each month. Some Simple Things We Do To Help 1- Cotton pajamas and cotton clothing during an episode. Some fevers are so high (105.6) it’s important to doRead more about 5 Simple Tips to Help Kids with High Fevers[…]