We’ve been on our Cyclic Vomiting Syndrome journey for a few years now. Thanks to our fantastic team of doctors, we are at a maintenance stage.
They didn’t just treat the symptoms of our CVS. They worked backwards from our episodes to get us to the maintenance stage.. We had been in a coalescence when we found them. They treated us through some episodes. Their objective was to lessen or relieve the episodes. Once that was done, it was to get the episodes to lessen spatially.
We have been vomit-free for more than a year.
Not many CVS’rs can say that.
It maybe contributed to the fact that we are a “Case Study” for his team. Or that I have become very aggressive in requirements for getting treatment for him. Or both.
But right now we are in our “Sweet Spot”. The sweet spot is about 3 months after the DHE Protocol. It has reached it’s peak of efficiency. We have had one day of abdominal pain, two days of nausea and next to no headaches or migraines. There has still been the feeling of a headache (pressure or weight) but not pain or disorientation or our symptoms associated with migraines or chronic headaches.
This is huge! We have switched his preventative med back to B-2(riboflavin) as it had the longest lasting effect when combined with the DHE. We also have propranolol on board.
We now sit wait and watch. As CVS survivors, we are used to the watching. You watch for triggers, you watch for signs of any change. Then you wait. Wait for what ever is next. That part sucks.
Half the time you don’t know what is next.
Being where we are in our journey, we have our next step. It doesn’t happen often. But this is exciting for us.
Chewy has reached a point of stability with his treatment plan. (barring any illness now that he is being exposed to germs on campus that he hasn’t been to in four years.)
Now we will log everything. And as usual when I notice definitive patterns, or increase in the frequency or severity of the daily headaches or migraines we get to experience a new side of he future of medicine.
Because we live a good distance away from our team of physicians, they have offered us the opportunity to met via Telemedicine. I think this is perfect. To a degree. We have been through the office rigmarole so much that I know how to do it. I own a stethoscope. I could buy a blood pressure cuff. But for the appointment that I plan on meeting with the doctor for.. They won’t need that. They literally review the charts that we keep to see the patterns or changes and agree that it it time to admit him again.
So I am perfectly okay with meeting with them for this appointment like that. Knowing that it won’t take me 7 weeks to get him seen and admitted. Praying the entire time that he doesn’t start vomiting.
Because let’s face it.. they can tell when we are stressed and it stresses them out too. As much as we try not to. It still happens. Every comment we make they hear. So, let’s just talk to he doc about the admission and move forward.. when we need to via the computer. I am hoping it will make things easier. Less stressful on his system as even car travel can be difficult when carsickness can be a trigger.
Until then, we will wait, watch and look forward to our next medical adventure using the future in medicine.