Monday, August 14, 2017

Rhythm, the Book Star


I am a Children's book author, with 5 books now available on Amazon.  The stars of my books are my children, and I can't think of any other thing that would inspire me more than them.

On August 15th, 2017, my second book starring Rhythm will be released called Rhythm's Fantastic Friends! and it is dedicated to people that have and are making a difference in Rhythm's life.




I wrote my first book starring Rhythm back in 2016 prior to her Infantile Spasms diagnosis.  The book, The World of Rhythm, imagined her as a 4 year old little girl who knew how to play a lot of musical instruments.  It was a simple book to teach children about the different types of instruments and the sounds they made, which they could hear on my website.






We had none of that stress of Epilepsy concerning us as we thought of Rhythm's development as she grew up.  We expected her to be like any other little kid and do all the things that kids her age do. Not long after the book's release, she received her diagnosis, and my blog posts now are telling that true to life story, which stood to contradict those things we imagined for her in The World of Rhythm.

As I approached writing Rhythm's Fantastic Friends!, the book became influenced in certain ways by her Epilepsy.  I had to make that choice of continuing to think positively and imagine her as a normal child and doing things that normal children do, or do I make it all about her Epilepsy?

I decided to blend it.  Rhythm's Fantastic Friends! spotlights people in various occupations that are a part of a child's life, sometimes big, sometimes small.  Examples I included were School Bus Drivers, Librarians, Optometrists, Policemen, Firemen and Teachers.  However, there were a few occupations I chose that relate to Rhythm's condition.

Therapist - an important part of Rhythm's life in particular, as she is receiving Physical and Occupational Therapy to help her learn to crawl, sit, walk and play.



Doctor - illustrated to show Dr Orrin Devinsky, her real life neurologist.



Pastor - an occupation in both the Philippines and The United States that have been very active in praying for Rhythm's healing from Epilepsy.

















I want Rhythm to be an inspiration to children and parents who face difficulties in early life and face unfair obstacles to a happy and healthy childhood.  I will always imagine Rhythm doing the things that she does in her books.  However, maybe in her next book, I will deal with her Epilepsy head on, and create something that children all over the world with Epilepsy and their parents can have something that deals with it in realistic terms, but provides unwavering hope.

Rhythm's books are available on Amazon sites worldwide, and all of the links to those Amazon sites are available on my website - www.patrickadamsbooks.com.

Thank you for following Rhythm's story.

NEXT BLOG POST: WE STOP THE SEIZURES!




Trials and Tribulations



Armed with the news of her diagnosis of Petriventricular Leukomalacia (PVL) on top of the still existing Infantile Spasms, we headed home from the hospital, Sabril in hand, ready to attack the remaining Infantile Spasms and annihilate them from Rhythm's body.  It was a deflating time for us, as all we wanted for Rhythm was to see her develop and do these things that most parents get the biggest joy of seeing their child do.  Crawling, walking, eye contact, talking, eating new foods and even just making you feel like your child is reacting to your love, hugs and kisses were all missing from our lives to this point with Rhythm.





Sabril was a quick failure with Rhythm.  Not only did it increase the number of Myoclonic seizures Rhythm was having, it seemed to be undoing all of the progress that Haleigh's Hope had provided.  7 to 10 myoclonic seizures per day increased to 30-40 per day, and in clusters.  It was alarming enough that we got her right back to the neurologist and they recommended an immediate wean off the drug.  Sabril works well with many epilepsy patients, but Rhythm was proving to be quite different.


On top of the Sabril effects, sleep had also become a significant issue with Rhythm, and subsequently to her mom and dad.  She would never sleep through the night and was often up for most of it.  Deep sleep never seemed to occur.  Our neurologist mentioned another pharmaceutical called Onfi.  It was an anti-seizure medication that also should help with sleep.  We weren't excited about trying that, but much like Sabril, were willing to give a try.




During this trial with the different meds and associated issues Rhythm was dealing with, we had another appointment with a team at a children's hospital who were going to do a physical assessment of Rhythm, as opposed to the neurological ones done to date.  We weren't sure what to expect, and fresh out of the hospital, didn't want any more difficult news.  This assessment consisted of a small army of doctors and observers to review Rhythm's case, her MRI scans and also do the physical assessment.  Within minutes of interacting with Rhythm, we were told by one of the doctors that Rhythm definitely had Cerebral Palsy and Spasticity and likely was experiencing Cortical Blindness.  The hits just kept on coming.  They also brought up two potential surgeries that the neurologists may consider.


1) Vagal Nerve Stimulatordesigned to prevent seizures by sending regular, mild pulses of electrical energy to the brain via the vagus nerve. These pulses are supplied by a device something like a pacemaker.

2) Corpus CallosotomyWhen performing a corpus callosotomy, the surgeon cuts the corpus callosum,  which is the large fiber bundle that connects the two sides of the brain. In contrast with lobectomy, corpus callosotomy does not involve removing any brain tissue. Instead, it usually involves cutting the front two-thirds of this bundle (a procedure called a "partial callosotomy") in the hope that the operation will markedly reduce the seizure frequency. Sometimes the other one-third is cut later ("complete callosotomy").

Neither one of those surgery options, particularly the Corpus Callosotomy, sounded like anything we wanted to go near.  Rhythm was to be assigned a team for Gait and Spasticity Disorders.  They would be working with Rhythm to see what mobility she could achieve and what therapies would be most beneficial.

We had to take stock of all of this information.  It was overwhelming, but at the same time it was comforting that we really did seem to have an army of people that wanted to help our daughter.  We just needed time to organize our thoughts and get Rhythm on the right path.



On our next neurology visit, we talked about the Cerebral Palsy diagnosis and the two recommended surgeries.  It was explained that the spectrum of Cerebral Palsy was quite vast, and that while some have limited to no mobility, others could hike and mountain climb.  We just wouldn't know for awhile with Rhythm.  The two surgeries were also quickly dismissed - not the time to consider anything invasive.  We walked out of the neurology office that day with a prescription for Onfi.  We held out hopes that Onfi would be the magic bullet for both the sleep and the seizures.

Onfi was also a quick failure.  One week in, and the exact same effects occurred as what happened with Sabril.  She was weaned off of that quickly.

So there we were.  That was now 5 pharmaceuticals that failed to stop the seizures.  Only Haleigh's Hope showed any effect.  Our neurologists at this point were concurring with us.  It was time for us to start looking deeper now into the concentration and dosage of Haleigh's Hope, and try to eliminate the irregular brain waves still appearing on her latest EEG.




If Haleigh's Hope dosing had the desired effect, we would be all in on treating Rhythm only with CBD Oil going forward. That is not the path for all children with epilepsy.  But it could be Rhythm's path.




ACCOMANYING BLOG POST: RHYTHM, THE BOOK STAR


NEXT BLOG POST: WE STOP THE SEIZURES!