Just a little after 7am, after I had fed Ethan breakfast and gave him his morning medications, he and I came into the living room to play before we had to get ready to leave for school. Ethan had 5 seizures, each lasting 10 to 15 seconds, back to back. Jeff had not yet left for work so I had him get the Diazepam, Ethan's rescue medication, and we gave it to him. The Diazepam is supposed to stop the cluster seizures, but it didn't. The seizures continued and didn't show any signs of stopping so the three of us packed up and headed off to the ER.
By the time we arrived at the ER the drowsiness that is a side effect of the Diazepam was very evident, and although Ethan wasn't sleeping, he was definitely out of it. He had another small seizure shortly after we got to the hospital while we were being checked in. Once again his vitals were monitored and blood taken. The doctor spoke on the phone with our neurologist (who is 2 hours away) and she directed us to increase his Onfi again (we had just increased it on Saturday).
We were home before 11am and Ethan was a little tired but otherwise playing like he usually does. He did take a good nap from about 1:15pm to 2:45pm and woke up ready to play, and still went to bed for the night a little after 8pm without much fuss. We didn't see another seizure all day and friends from our small group at church made us dinner, which was very nice (and delicious).
This morning I took Ethan to school and then stuck around for a little while. I spoke with the nurses who care for him at school and then saw him working with his OT and then during circle time. I left around 10am, and so far, things must be going okay (it is a little after 2pm right now) because I haven't gotten a call from school.
I've spent much of my day on the phone.
- I spoke with Ethan's DSCC care coordinator to see if the recent changes in seizure activity and the subsequent ER visits make a difference in making Ethan eligible for our state's Medically Fragile and Technology Dependent (MFTD) Medicaid waiver program, which would allow Ethan to have Medicaid as a secondary insurance and access to other services such as respite care. Unfortunately, the care coordinator does not think Ethan will "score" high enough to be eligible, but she is going to double check with others in her office who are care coordinators for children on the MFTD waiver. [Every state gets to decide under what circumstances a child with disabilities, whose family's income is above the cutoff to financially qualify for Medicaid, can be eligible for Medicaid, and the qualifications/requirements vary greatly by state. IL is one of the worst states when it comes to services for children and adults with disabilities.]
- I spoke with the nurse at Ethan's neurologist's office and she is going to talk to the doctor and get back to me. I wondered if the strength/dose of Ethan's rescue medication might need to be raised, and if the reason it wasn't stopping the seizures was because it simply wasn't strong enough. My hope is that a higher dose is still considered safe for my little guy and that if the need arises to use it once again that it would actually stop the seizures, and then we could simply monitor him closely at home as long as his breathing is fine, etc.
- I spoke with Ethan's nurse case manager through his pediatrician's office, filling her in on the last several days and asking her to talk to Ethan's pediatrician about a number of things, including if she could find out if the new neurologist that we are hoping to get Ethan into next month (we still don't have an appointment) is a doctor who is a supporter of the use of medical cannabis (marijuana) for children with uncontrollable epilepsy. I also asked her if she would get our pediatrician's thoughts on it. At this point we are very open to learning about all the possible avenues we could take to try to get these seizures under control.
- All the same requests from Sunday.
- Ethan has a field trip tomorrow. I pray that he would be able to go on it (I'll be going with) and that he won't have any seizures while we are out in the community visiting Santa.
- Wisdom about medical cannabis. I have begun reading more about Charlotte's Web, which is a hemp oil, and therefore is legal and available for use without a medical cannabis card. We have not yet pursued a medical cannabis card for Ethan, and the oils are not yet available at the Illinois dispensaries, so even if we had a card and the required script we would not be able to obtain it "locally." We also want to see if the clinical trial for Epidiolex is still accepting new patients, and if they are, find out if Ethan a possible candidate. My understanding is that the trial is not accepting new patients at this time, but you never know until you try.
- I would like to start some annual local fundraising events for the GFPD to raise money for PBD-ZSD research. The top PBD-ZSD researchers in North America and Europe have several promising ideas that they would like to pursue, but it takes money to do so, and research dollars for rare diseases are rather limited, so the GFPD and other rare disease patient/family organizations find themselves in a place where they need to raise the money needed to help find possible treatments and ultimately cures for the diseases that affect their loved ones. However, I'm going to need a team of people who will help me with this. Please pray for a team of 5 to 10 people to step up and volunteer to be part of a planning committee who can help me establish a fundraising event or two that can be successful in raising awareness and much needed financial support for research.