The Battles

Tilly has had a lot of battles in her life, and over the next few weeks, we will be adding more details of some of the major battles that Tilly has endured and will continue to endure throughout her life. For now, you can read a summary of these battles here. If you have any questions or want to reach out to us, please visit the Contact Us page!

Tilly started having seizures when she was just a few weeks old, but because of the abnormal nature of the type of seizures that she was having, they were not recognized as such until she was about 3 months old. After having a larger, more obvious seizure, she was hospitalized for the first time for imaging, testing, and monitoring. After a harrowing few days, she was diagnosed with Aicardi Syndrome, a lifelong disability with no cure. More information about Aicardi Syndrome can be found on The War, and more details about her diagnosis can be found on The Diagnosis.

The first treatment for Tilly's seizures, called Infantile Spasms, was high doses of steroids. These were given twice a day, in addition to other anti-seizure medications that she was prescribed. Steroids, unfortunately, come with a lot of side effects, including difficulty sleeping, extreme hunger, and agitation, sometimes called "Roid Rage." Tilly had all of these. She didn't sleep, she was constantly upset and crying, and she ate as frequently as she possibly could. Since she was breastfed and unable to take a bottle, this was really hard on Tava!

While the steroids did help, they did not eliminate her seizures as had been hoped. Over the next several months and now years, she was put on several different medications to try to resolve her seizures. This included specialty medications from specialty pharmacies, including some we had to mix at home ourselves and others that were injections that had to be given multiple times a day in her legs. These medications had mixed results, and unfortunately, the most successful of them were steroids that cannot be used long-term.

When she was a year old, Tilly was still not eating any food by mouth at all apart from breastmilk, and she still could not take a bottle. Because of this, she needed to have a feeding tube surgically placed into her stomach through her belly. This surgery ended up having complications that led to multiple ER visits and an infection in her abdomen that required a second surgery to resolve. While initially traumatic for Tilly, the end result was the ability to wean from breastfeeding and get all of her medications through her tube instead of by mouth. When finally resolved, it was a blessing!

Tilly was also placed on a special ketogenic diet for a time to try to control her seizures. This meant that her progress in trying to learn how to eat food by mouth was halted, and she was placed on a special formula where over 90% of her calories came from fat. Ultimately, this treatment also failed, causing more side effects than benefits for her.

She has since been placed on other specialty medications, but she still has multiple seizures a day. The next step for her is brain surgery, for which she is scheduled in August. This will involve placing a device called a VNS, or Vagus Nerve Stimulator, into her brain. This device uses electrical shocks to interrupt seizures as they happen, and will also use electric shocks to try to prevent seizure activity from occuring at all. This is a major surgery that will require specialized imaging and a whole team of doctors and nurses to make sure it goes well. Hopefully, Tilly will have successful seizure control from this! Only time will tell!