First Step in Walking the Walk

>> Previous Post >>TLC is now able to visit a clinic just over a hundred miles away that is specific to Dysautonomia.  As we do this, we are cutting ties with the neurologist at Children's.  We hope that there are not any changes to her existing meds as they are all working just fine.  However, we do want to have a doctor to consult with locally that knows and understands what is going on with her nervous system issues.  We have heard from some that they will only be able to work with the Dysautonomia and will not be able to help with the Cold / Heat Urticaria and the Ehlers Danlos.  However, this will be a big improvement over a doctor that does not know anything about any of them and can only try to treat the symptoms.>>>>

We had completed the first leg in our journey of Walking the Walk.  A week ago Monday, we visited the Dysautonomia Clinic.  Our journey began at 5:00 a.m. leaving home with a destination that is only an hour and a half away, but due to much traffic, we arrived three hours later.  One minute prior to our daughter's appointment, now knowing where to go in the building and toting bags of medical records, pillows and a change of clothes to exercise in.  We were the first ones there, but we made it.

We all went into the nurses office.  She asked many questions, some no's, but many yes'.  As her parents, we returned to the waiting room. Our daughter was wisked away for autonomic testing.  Her dad and I remained in the waiting room until the testing was completed.  Even though she is fifteen, I have always been with her at her appointments, this was one of the few rare cases I was not.  It left me a little nervous.

The nurse came and guided me to the doctor's office, my daughter sitting uncomfortably in a gown directly in front of the doctor.  In a slow, calm manner, he began asking some of the same questions and going over the test results all at the same time.  He was in his 70's a little feeble looking, he kept asking some of the same questions over.  I allowed my daughter to answer all the questions that she could with out me interjecting.  However, there were times the brain fog crept in.  It was difficult for her, she was either confused or forgetful.  I answered when I could.  I soon realized, he was testing her brain fog.

On entering of the tests, her heart rate was 126 and during exercise quickly rose to 176.  Based on the testing, we found that her current heart medication was not working.  Despite his first thoughts to increase the dosage, based on other factors, he decided to change her medication.  He calmly explained the change and that most with DYS respond well to the Beta Blocker.  He also suggested two other medications.  One she had taken before which would both help her sleep and also prevent the jerks.  The second would balance the chemicals in the brain and also help her sleep better thus preventing her hypersomnia.

He wants us to follow up with him and keep him aware of how she is doing.  He knows the meds may have to be adjusted and is willing and ready at any given time.  He tells us that the Seratonin will take two or three weeks to really work its way into her system before an improvement would be noticed.

We are now one week out from the appointment.  The first full night of meds was like a miracle being performed.  TLC slept the entire night through and woke up at 7:00 a.m. without an alarm or being told to wake up.  This has continued every morning since.  Her heart rate remains about 80 bpm, blood pressure is stable and no Jerks.  She did not know what to do to fill all this extra time she is awake.  Not just up and moving around, but truly AWAKE.  The first day she talked nearly non-stop.  That has stopped, but she is once again like a "normal" person.

Where we once feared that she would not be able to drive or go to college and pursue her dreams, the possibilities are now endless for her.

Despite this appointment being just about Dysautonomia, there is some hope that this will improve her Cold Urticaria in that it will reduce her breaking out and/or raise her cold tolerance threshold.  We give so little, yet ask so much.

Thank you, Lord, for your many blessings.  We love you and remain faithful during the difficult times and we choose the same during the good times.  May we continue to honor you in all we do!