Diagnosis Overload

Rhythm Star Adams just turned 5 years old.  It's been a tumultuous road to age 5, but thankfully the last 3 years have been more about the positives than the negatives.  Her seizures stopped in 2017 and have not returned, thanks to Haleigh's Hope Cannabis Oil.  I can't say it enough - there was no change in her seizures until we introduced CBD Oil.  All pharmaceuticals that we tried on Rhythm did not impact her seizures in the slightest. 

Rhythm's ongoing medical story began in the Philippines in 2016 and continued on here in the United States. Even before that, as she was a long-shot to survive her emergency premature birth.  As I reflect back on everything, I am still left troubled by something.  Rhythm has received 5 different medical diagnoses over the years from Doctors, Neurologists and Therapeutic Experts.  We still struggle in some cases to determine whether or not Rhythm did or still does have these varying diagnoses.

Here is a history of the diagnoses given to Rhythm:

January 2016: Diagnosed with Infantile Spasms Epilepsy after the onset of seizures
April 2017: Diagnosed with Petri-Ventricular Leukomalacia (PVL) after receiving an MRI at a hospital in New Jersey
July 2017 - Diagnosed with Cerebral Palsy by a Therapy team referred to us by our neurologists in New Jersey
October 2017 - Inferred that Rhythm had Cortical Blindness after an eye exam had her eyes declared healthy, but the associated condition of Rhythm's brain may be impacting her ability to process what she sees.
December 2019 - After a significantly long time (14 months) had passed following an EKG where there was no hyppsarhythmia, Rhythm's former neurologist in Las Vegas called us to let us know that although no seizures were present, signs of Lennox-Gastault Syndrome (LGS) were present.

Infantile Spasms, PVL, Cerebral Palsy, Cortical Blindness and LGS.  That's a lot to process over the years, and as we try to make sense of Rhythm and her behavior, mannerisms, patterns and development, we know that the answer has to be there, somewhere.  Not only what she has, but what it means for the future.

In my next 5 blog posts, I will take each of these diagnoses one by one, look at all of the causes, symptoms and developmental outlook and compare them to Rhythm's medical past, the similar symptoms she experienced and how she has developed.  I am not inferring that any of these are wrong, but there seems to be shades of gray on the surface with some of them and how they have applied to Rhythm.

I would also be very curious about the experiences of others in this regard.  I just don't know how different Rhythm's case is compared to others.

Rhythm's 5th birthday party was very low key in this time of COVID-19, but some of her friends in the neighborhood treated her to a Happy Birthday sing-along and some cute sidewalk chalk art.  Rhythm then had a pool party here at her home.  Happy Birthday, Rhythm.  Our precious little girl.