They finally believe they have found answers. Next month, she is scheduled to have a surgery which is very invasive and very expensive. Additonally, Tori and her family must travel to Connecticut for the surgery and stay there for two weeks for recovery. As you can imagine, their expenses will add up very quickly. Please consider making a donation to help Tori's family pay for medical and travel expenses. For more details about Tori and her journey, please keep reading.
The end of 2015 would be the beginning of a long journey with our daughter, Tori...
Tori has always been healthy, vibrant, smart and full of life. Her health began to decline gradually, beginning with GI issues.
After exhausting everything (or so we thought) GI related, we ended up at Children’s National in DC, meeting with a pediatric cardiologist for upper abdominal/chest pain.
Diagnosis 1: Tori was diagnosed with POTS (Postural Orthostatic Tachycardia Syndrome).
To date, we still struggle to manage her POTS symptoms (dizziness, faint feeling, severe fatigue, body pain). Tori’s cardiologist felt she showed signs of MALS (Median Arcuate Ligament Syndrome) and thought this could be causing her severe upper abdominal pain.
After an abdominal ultrasound, we had our second diagnosis.
Diagnosis 2: Tori was diagnosed with MALS.
MALS causes Tori extreme abdominal pain and she began feeling nauseous at every meal. Before long, she was throwing up after most meals and her weight dropped from 120 to 94.
During all of her blood work, certain anti bodies came back elevated that pointed to an auto immune. Tori had joint pain and always complained about hurting, but we thought it was growing pains. She’s also always been overly flexible and it seems like every joint cracks.
We found ourselves at a pediatric rheumatologist and within a few months, we received an auto immune diagnosis.
Diagnosis 3: Sjogrens Syndrome
Sjogrens causes dry eyes, dry mouth, joint pain and fatigue.
Most recently, Tori has experienced “all over” body pain that doesn’t get better as the day goes on... it gets worse. Her rheumatologist also gave us another diagnosis this past month.
Diagnosis 4: Amplified Musculoskeletal Pain Syndrome
Through all of Tori’s diagnosed conditions, her abdominal pain has been something that has caused her a great deal of pain, but MALS is not a condition many doctors are familiar with and the doctors that are, steer away from performing the surgery that helps with the pain. We have gotten our hopes up so many times, meeting with one doctor after another, believing they would be willing to help our sweet girl... only for them to tell us no.
Many pediatric patients find themselves traveling from all over the country to see Dr. Hsu in Connecticut. We have exhausted every option locally, but are now one of those families that will be traveling to Connecticut in a few short weeks.
Dr. Hsu believes MALS is a nerve issue and without the nerves being addressed, the core issue isn’t being addressed. His procedure requires an open surgery. The surgery is a serious one and the recovery is long, it could take up to a year before she is fully recovered... but the end result means no pain after eating... and with any luck, her POTS symptoms may decrease.
This trip and surgery is going to be very expensive. The medical bills alone could be thousands. Expenses of the trip (we will be there for two weeks) will be costly. Care for Tori when we get home will be expensive.
Please consider donating to our go fund me page to help us get Tori the help she needs so she can have a better quality of life.
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