Our History

Short Version of Our History:

This is our story of living day to day with chronic illness.  My 16 year old daughter has had Chronic Fatigue for 3 years, Celiac Disease for almost one year, was diagnosed with Neurally Mediated Hypotension last week, and the story continues to evolve.  Follow a mother’s rantings if you dare.

A Tad Longer Version of Our History:

This blog is the story of my daughter, Jessica, our family, and a daily chronicle of our experiences in 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 bit of 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.  Her best friend had mono at the same time.  The only difference in their illnesses was that Jessie was plagued with a constant headache.  Her friend recovered.  She did not.  We later found that she tested negative for mono.  

By December we were having all of the blood tests, MRI, etc. with no answers.  Jessie gradually 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).  She was not only our doctor, but also became our friend and supporter.  Jessie also began to see a wonderful pediatric neurologist who eventually found the right combination of medication to help control many of her symptoms.  Her initial symptoms were exhaustion, insomnia, migraines, muscle aches, and joint pain. 

During the initial 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.  By May or 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 cannot 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 celiacs disease.  Simply put, she can no longer have any form of gluten (no bread, pastries, pizza, you get the picture).  For most this is a terrible diagnosis, but for Jessie, it was like a death sentence.  See, this girl of mine has always had the gift of baking, specifically pastries.  Pastry chef was high on the career list. (Footnote:  Jessie has since come to realize that there is a real calling for gluten-free pasty chefs, so all has not been lost)

In October of 2008, the migraines returned with a vengeance.  We have since 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 headaches just kept coming back with no explanation.  Therefore, she must be depressed.  My gut feeling was that she wasn’t depressed. I felt that something was really out of whack with her system or medication and with the recent diagnosis of celiacs, we were due for a complete overhaul.  

Out of desparation, I turned to the internet and found the Hunter Hopkins Clinic in Charlotte, North Carolina.  We had our initial appointment last week and were there for 5 hours, four of those being a one-on-one interview with the doctor.  Many questions are still in the air as to her true, final diagnosis.  While there, Jessie had the tilt table test and failed miserably, passing out after only five minutes.  This resulted in a diagnosis of Neurally Mediated Hypotension.  They took, what seemed like, her body weight in blood for tons of tests.  The doctor found a pronounced heart murmur, which apparently had not been noticed previously.  We will be going to a cardiologist this coming Wednesday for an echocardiogram.

Well that’s 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.  

3 responses to “Our History

  1. lynae

    Reading about your daughter has given my hope.

    I’m twenty one years old and suffer from Neurally Mediated Hypotension, I was only diagnosed a year ago, but since then my life has been turn upside, I had a full time job, a social life and was about to head back to school. The meds were working and I could get through the day without feeling like I was going to hit the deck every time I stood up. Then during the Christmas holiday’s I all of a sudden was tired for no apparent reason, I go to work and couple of hour later feel like I could sleep for a week. When I wasn’t working I was sleeping it was all I could I didn’t have the energy to do anything else.

    Six months later I’m still not getting any better which makes me think that I there might be something else going on or my medication isn’t right. If I don’t take enough I sit bouncing my legs or I talk really fast, I sometimes feel like I’m hyper. And if I take to much for the day I end up looking and acting drunk even though I’m not.

    I’ve been put on a high dose of Midodrine and the drug hasn’t been put on the PBS yet, which scares me a little bit. I’m also on a low dose Florinef, but the side effects of both medication are sometimes worse than helping with the illness.

    Know that you daughter is going through a similar thing is making more reasured that I’m not going crazy and that it can be fixed.

    Do you have any ideas, tips or question that I can ask my doctors about when I next see them?

  2. Help me, or should I say, please help my daughter. Sam was diagnosed with NMH in 4/08 after tons of test, and at least a dozen doctors. She failed the tilt table test within the first few seconds after the table began to tilt upwards. She passed out cold, with her BP droping to 60/30. She didn’t even have time to finish her sentence about the extreme pain she was getting in her stomach and bamm, she was out. Her illness started on 12/27/07 and for the next 3 months got progressively worse. In April of 2008, between a cardiologist at Johns Hopkins Hospital and the head of the GI Motility Clinic at Kennedy Krieger Institute, they diagnosed Sam with NMH, and severe reflux. She is now on several medications, 3 of which have long term and irreversible symtoms. One has a Black Box Warning from the FDA and stresses not to take it long term, long term meaning more than 12 months. Sam has now been on them for 18 months and it doesn’t appear that they plan on taking her off any of them anytime soon. She feels no better with the meds, then she did prior to taking them. The only thing that has changed for her is the reflux. She takes Nexium 10mg twice daily and the chunks of food no longer come up to her throat. But the severe stomach aches, headaches, nausea, black dots/black out/light headedness continues 24/7 with no relief. Please email me. I am desperate to help her. Thank you. Sandy srlaxply@aim.com

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