Sophia was diagnosed with epilepsy about 5 years ago and it was pretty manageable for 4 of them. She was on one medication that needed to be increased every year as she got older and bigger. About a year ago after we increased that medicine Sophia started having more seizures, her neurologist said that we had maxed out the dosage for the medicine she had always been on so we added a new one. That medicine came with its side effects: loss of appetite and risk of kidney stones which helped to finally make the decision to get a feeding tube. Things got better for a period of time until Sophia started showing new symptoms: she was slouching towards the left when sitting down, sometimes she could catch herself but sometimes she couldn't and would fall on the floor. She was very shaky and weak and we increased the medication several times with little improvement. Last November Sophia had what was supposed to be a 48 hour EEG at the hospital but she ended up staying there for a week because the test showed that her brain was in constant seizure activity even in her sleep, you can read more about it here. At that time, we made a lot of different changes in her medications and found a treatment that seemed to control the seizures enough to be sent home. Sophia was so drowsy the first few weeks due to the side effects of the meds that she would take several naps during the day and still slept all night. Little by little she was more awake and alert but then she started having seizures again so we kept increasing the dose of some of the medications but with them the sides effects increased too. The sleepiness and the drowsiness came back and she also started losing her beautiful hair. It's funny how you can be strong facing difficult situations but then, something little sneaks up on you and you lose it... I was able to manage the stress of having to watch Sophia like a hawk to make sure to catch and tape any seizures to show the doctor, trying to remember all the dosage of all the medications and seeing my daughter exhausted all the time. But when I saw the incredible amount of hair in her brush and the bold spots in her beautiful head I lost it! I felt so powerless and so helpless... Her hair loss was like an imminent proof of the toll the strong medications that try to control this horrible disease have taken on my daughter.
The last dose increase helped for a few weeks which seemed to be the pattern with every medicine we try. Sophia showed the same symptoms she had last year: tremors, shakiness, absent and full blown seizures and extreme tiredness. An EEG showed she was seizing constantly again, day and night non stop. Her brain is in constant activity, when she sleeps she doesn't enter into a deep sleep so she never gets to really rest. That's why she is so tired all the time!
The medicine is clearly not working, all it is doing is adding to the sleepiness and causing her hair loss. Right now the plan is to go back on a medication Sophia was on before which helps a little but she can't be on it for a long period of time but enough to make a decision as to what path we should take. The doctor gave us two options to think about: a ketogenic diet (a very strict diet high in fat, low in carbohydrates) or a VNS therapy (vagus nerve stimulation) which is an implant that sends pulses to the brain to control the seizures, this therapy is used when seizure drugs are not effective and surgery is not an option. Both have their pros and cons and we clearly have a lot to think about. I am not sure which path we are going to follow but we have to do something soon! Sophia wants to be the happy, energetic, strong, active, she wants to learn and advance, she wants to play and walk but her body is trapped in a cobweb made with drug side effects and a fog caused by the seizure activity in her brain, and I am going to do everything and anything I can to help her break it and be the girl she is meant to be and we all know.
