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Meet Lisa L., Parent Mentor at Akron Children's Hospital

Lisa L.

Lisa's Story

I just added some information about the Ehlers Danlos Syndrome to the 3rd from the last paragraph, but I went ahead and pasted the whole story in for you (thought that might be easier).

When Savannah was 16, she started having terrible headaches. She had them several times a week at first. A few months later, she had a headache that would not go away. She was first diagnosed with chronic daily headaches and chronic migraines. Basically, she has a constant headache with some periods of migraines overlapping several times a week which last from several  hours to several days and include additional symptoms such as nausea, dizziness and light sensitivity. She has seen three different headache specialists and tried many different medications, most of which did not help, as well as physical therapy, counseling, craniosacral and massage therapy, and chiropractic therapy. She also has terrible anxiety and depression and has seen psychiatry for that, but again medication has been of little help for that.

Within several months of when her constant headaches started, Savannah did a highly-recommended three-week inpatient chronic pain rehab program at a Cleveland children’s hospital, which helped immensely with her functioning and pain management for a while. The program incorporates medical care, physical therapy, occupational therapy, exercise, hydrotherapy, counseling with the patient and family, as well as art, music and recreational therapies, which are all very important in managing chronic pain.

Savannah is now 21 and life continues to be very difficult living with chronic pain and other symptoms, and unfortunately her health continued to decline. She managed to graduate high school (which we weren't sure was going to happen for a little while) and start at the University of Pittsburgh, but was only able to continue attending for a year and a half. Along with the headaches, she also had worsening issues with syncope and dizziness, fatigue, insomnia, cognition and memory, as well as the anxiety and depression. Eventually, she also developed terrible joint pain, which made us realize that there was more going on than just the headaches/migraines, plus the fact that she just kept getting worse. After some extensive testing she was positive for Lyme disease and is now getting treatment for that. It was frustrating that it took five years to get a correct diagnosis, but Lyme is a very complex and misunderstood illness. It mimics many other illnesses and testing is not very reliable, making it difficult to diagnose. We also noticed that in addition to joint pain, she was also having subluxations (dislocations) occur, which is not something that is normal for Lyme disease. She has been found to have joint hypermobility, so she saw Genetics and confirmed a diagnosis of Ehlers Danlos Syndrome (EDS) type 3, also called hypermobile EDS, a genetic connective tissue disorder. There is unfortunately no cure for this, but we hope the diagnosis will help her manage some of the issues better. There are some vascular types of EDS as well, so she is seeing the Heart Center to make sure there are no heart issues. We are hopeful that her health will improve with the Lyme diagnosis and treatment and she will be able to function better and live more of a normal life. Currently she works from home on a freelance basis doing commissioned  drawing, which allows her some flexibility, but she still needs a lot of help from me (I am also a single parent and her father is not involved).

Savannah has also had esophageal reflux (GERD) much for her life, which is generally well-controlled by medication and paying attention to what she eats. She also has had many food and environmental allergies throughout her life, many of which she’s grown out of.

Being the parent of a child who is in constant pain and constantly ill and being unable to stop it is one of the worst things I have experienced. You do feel like there are very few people who understand, which is why I want to be available to other parents who are going through this with their children and offer them my knowledge and support.

Lisa is a parent mentor for these conditions: Anxiety, Depression, Dysautonomia, Ehlers-Danlos Syndrome, Esophageal Reflux, Headache, Lyme Disease, Migraines, Syncope.

Lisa is a mentor for these care services: Cardiology, Genetic Syndromes, Mental Health, Neurology, Rehab

Contact Lisa

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