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 Stimulator - designed 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 Callosotomy - When 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!
