The weather in our neck of the woods has been a bit unusual, one day we are running our air conditioner the next day the heat is on. Our days are kind of like the weather, unpredictable. We are so grateful for continual antibiotics, antifungals, and ethanol lock therapy, we believe that the combination of all three of these have allowed us to spend more days at home as a family of six, as our littlest one has not had to battle life threating infections as often as she has. Please, knock on something wooden! We are however dealing with a host of other issues that fall under the umbrella of “disease progression”.
We recently had an appointment with Lucy’s cardiologist who continued to emphasize to me how severe Lucy’s dysautonomia is, I believe he said something to this effect, saying that Lucy has POTS is like saying a hemophilic bleeds. Point well made! Many of the anti-epileptics that Lucy is on have the side effect of lowering heart rates which is both good and bad. Good in that they are helping to reduce the stress on her heart muscle by lowering her heart rates. Bad because heart rates, especially high heart rates, are often a sign that the body is in distress. By lowering Lucy’s heart rates with medication we run the risk of masking a symptom of more serious problems. This combined with her severe temperature instability…well, that just makes it all the more difficult to determine if she is really “sick”. We discussed Lucy’s declining vascular health and how that goes hand and hand with her declining autonomic nervous system. Her hands and feet are chronically cold, very pale, and extremely dry. Her cardiologist asked me who her rheumatologist was, my response, “Believe it or not, we don’t see rheumatology.” His response, “Perhaps you should.”
Seizures…ugh! We were nine days seizure free until BAM, they struck again, and with a vengeance. Lucy has a mixed bag of seizures in which she often has several seizures in a row with a few seconds break in between which are then followed by a sleepy then grumpy postictal period. She has this look about her that is all too telling now, when you see it you know it’s going to be a bad day seizure wise. Conversations were had with her medical team and it was decided that we are going to increase her Keppra dosing by more than one hundred percent, that's a lot of Keppra! Unlike the other times that we have increased her dosing this time she appears less “foggy” and more alert, we’re hoping that this means we are finally achieving the correct dosing. Due to the large increase in Keppra, we were stepping Lucy up to the desired dosing. Her seizures managed to break through earlier this week so we decided to skip a few steps and go straight to the top. We all hope and believe that seizure control is key to better days for our girl.
In spite of all things medical, summer is fast approaching and I for one, and Jack, Megan, Sophie, and Lucy for two, three, four, and five are looking forward to the
lazy days of summer.