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Our History
Saturday, August 22, 2009
The Short Version of Our History:
This is our story of living day to day with chronic illness. Our 16 year old daughter has had Chronic Fatigue Immune Dysfunction Syndrome since November 2005, Celiac Disease since April 2008, and was diagnosed with Neurally Mediated Hypotension in February 2009.
The Longer Version of Our History:
This blog is the story of my daughter, Jessica, our family, and a daily chronicle of our experience living and coping with chronic illness. From time to time my posts will be angry, but I'm hoping that they will each contain a healthy dose of humor and hope. You simply can't survive life without throwing in a little self-depreciating humor on a regular basis.
This blog is the story of my daughter, Jessica, our family, and a daily chronicle of our experience living and coping with chronic illness. From time to time my posts will be angry, but I'm hoping that they will each contain a healthy dose of humor and hope. You simply can't survive life without throwing in a little self-depreciating humor on a regular basis.
First things first. We need a bit of history. Sorry, this will be long, but necessary.
Our family consists of me (Lori), hubby and dad (Jeff), older son and brother (Wes) and finally daughter and sister (Jessie). We will all pop in from time to time.
Now the story. Jessie was your typical kid. She loves sports, participating in everything from mountain biking and horseback riding to soccer and softball. She played flute in the school band, and was (and still is) an extremely sociable, straight "A" student.
The first weekend of November, 2005 Jessie, then 12 years old, became sick with what we were sure was mono. A friend had mono at the same time and Jes had been exposed. The difference was that her friend recovered and our daughter didn't. She ended up testing negative for mono - twice.
By December we were having all of the blood tests, MRIs, etc. with no answers. Jessie, bedridden, became de-conditioned and began physical therapy. By the grace of God, we had a young doctor who recognized that Jessie could possibly have Chronic Fatigue Immune Dysfunction Syndrome (CFIDS). We were sent to a pediatric neurologist who, after much trial and error, found the right combination of medication to help control many of Jessie's symptoms. Her initial symptoms were exhaustion, insomnia, migraines, muscle aches, and joint pain.
During the first seven months of being sick, Jessie was either confined to her bed or our sofa. (She ruined our sofa by creating a permanent indentation and we joked that when she got better we would have a sofa-burning party!) Jes was assigned a homebound tutor through the school system and finished 7th grade at home. By June of 2006, Jessie slowly built up the strength to get out of the house a bit and she was eventually able to go back to school in the fall of 2006. She would have relapses many times during the next two years requiring the use homebound tutoring. While she can walk, get out, and attend school, Jessie still isn't able to run or participate in sports at all.
In February of 2008, as a ninth grader, Jessie became ill again, but this time with new symptoms. Over the course of the next 2 months it was discovered through an endoscopy that she also has celiac disease. Simply put, she can no longer have any form of gluten (no bread, pastries, pizza, you get the picture).
In October of 2008, the migraines returned. They were constant and debilitating. We had two trips to the emergency room to break the cycle, relapses of CFIDS, ending with advise from her Atlanta neurologist to get her to a psychiatrist because the migraines continued to return with no explanation. Therefore, she must be depressed. Our gut feeling was that we weren't dealing with depression. We felt that something was out of sync with her system or medication and with the recent diagnosis of celiac, Jessie was due for a complete overhaul.
Now the story. Jessie was your typical kid. She loves sports, participating in everything from mountain biking and horseback riding to soccer and softball. She played flute in the school band, and was (and still is) an extremely sociable, straight "A" student.
The first weekend of November, 2005 Jessie, then 12 years old, became sick with what we were sure was mono. A friend had mono at the same time and Jes had been exposed. The difference was that her friend recovered and our daughter didn't. She ended up testing negative for mono - twice.
By December we were having all of the blood tests, MRIs, etc. with no answers. Jessie, bedridden, became de-conditioned and began physical therapy. By the grace of God, we had a young doctor who recognized that Jessie could possibly have Chronic Fatigue Immune Dysfunction Syndrome (CFIDS). We were sent to a pediatric neurologist who, after much trial and error, found the right combination of medication to help control many of Jessie's symptoms. Her initial symptoms were exhaustion, insomnia, migraines, muscle aches, and joint pain.
During the first seven months of being sick, Jessie was either confined to her bed or our sofa. (She ruined our sofa by creating a permanent indentation and we joked that when she got better we would have a sofa-burning party!) Jes was assigned a homebound tutor through the school system and finished 7th grade at home. By June of 2006, Jessie slowly built up the strength to get out of the house a bit and she was eventually able to go back to school in the fall of 2006. She would have relapses many times during the next two years requiring the use homebound tutoring. While she can walk, get out, and attend school, Jessie still isn't able to run or participate in sports at all.
In February of 2008, as a ninth grader, Jessie became ill again, but this time with new symptoms. Over the course of the next 2 months it was discovered through an endoscopy that she also has celiac disease. Simply put, she can no longer have any form of gluten (no bread, pastries, pizza, you get the picture).
In October of 2008, the migraines returned. They were constant and debilitating. We had two trips to the emergency room to break the cycle, relapses of CFIDS, ending with advise from her Atlanta neurologist to get her to a psychiatrist because the migraines continued to return with no explanation. Therefore, she must be depressed. Our gut feeling was that we weren't dealing with depression. We felt that something was out of sync with her system or medication and with the recent diagnosis of celiac, Jessie was due for a complete overhaul.
Out of desperation, we turned to the internet and found the Hunter Hopkins Clinic in Charlotte, North Carolina. We had our initial appointment in February, 2008 and were there for 5 hours, four of those being a one-on-one interview with the doctor. While there, Jessie had the tilt table test and passed out after only five minutes. This resulted in a diagnosis of Neurally Mediated Hypotension.
That is the MUCH abreviated (believe it or not) history of Jessie's illness. If you've stayed with our story for this long, I must say that you are a real trooper and will be provided with stories and updates on a regular basis.
That is the MUCH abreviated (believe it or not) history of Jessie's illness. If you've stayed with our story for this long, I must say that you are a real trooper and will be provided with stories and updates on a regular basis.
4 Reactions:
I'm so sorry to hear about Jessie's illness. It must be quite painful as a mom to see your child suffer.
I've heard good things about the Hunter Hopkins Clinic.
I look forward to reading about updates as they happen and I'll keep you all in my prayers.
Much peace to you and your family-
Hey Lori!
Thanks for your comment on my blog. I am sorry to hear about your family's struggles with Jessie's CFIDS/Celiac. She is lucky to have a family who believes and supports her and has pursued diagnoses--it can be difficult to be taken seriously at any age with self-reported symptoms, but I think even moreso as a child or teen. I love all the inclusion of recipes and cookbooks in your entries--I am not gluten free myself, but I too love baking and some of the best cakes that I have ever tasted have been GF. I'm excited to explore the recipe recommendations you make on the site!
Hey, Lori - Thanks for swinging by my blog on Rare Disease Day. We know several JM kids who also have celiac so I know it's a tough way to live. Best of luck to you and Jessie.
Kevin
Hi Lori,
I'm so sorry that your daughter is experiencing all this. I was diagnosed with Fibromyalgia and CFIDS almost 30 years ago. There was so little information and therapy then.
I have always taken the natural approach and have tried many modalities. I have fund that eliminating gluten from my diet is key.
I am looking forward to checking out your recipes.
I also understand the challenges of food elimination. My 10 year old daughter has life threatening food allergies to all nuts, beans, soy and various seeds.
I believe I understand what some your daily challenges when it comes to food.
Wishing you and your family all the best.
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