Monica’s HH Journey
Monica was our second daughter, born full term on October 2, 2011. We were so excited to have 2 little girls to love! Our first daughter was a content baby and we didn’t expect anything different with our second daughter. But it wasn’t long until we realized something was bothering her. Some called it colic, some called it acid reflux, but we couldn’t quite put a finger on it. She would have spells where she couldn’t relax and sleep. This improved somewhat after 3 months and otherwise she was a normal healthy baby, reaching all the milestones when expected. From a baby Monica would have outbursts of laughter. Sometimes the laugh would turn to a cry and sometimes we weren’t sure which it was. We didn’t think much of it, this was just Monica.
Moving on a few years to 2017. Monica is now 5. I remember walking out our long lane with Monica. Sometimes she would ask me to stop walking a little because her eye is twitching. It lasted a few seconds and we would keep walking. I thought it was a little odd but didn’t connect it with seizures. Around that time her older sister, who slept in the same room, said Monica sometimes makes weird noises at night. My husband thought it reminded him of seizures but I was in denial.
Soon after that Monica came to our bedroom one night because she couldn’t sleep. While I was up with her she had a seizure. I woke my husband and he was able to capture one on video. She had 8 seizures that night. We were scared. Dealing with seizures was something we knew nothing about. We made an appointment with our family doctor and she sent us to a neurologist.
Thus began a series of appointments. One question our neurologist asked was if Monica has peculiar outbursts of laughter? My husband and I just looked at each other. Why yes, she has ever since she was a baby! The doctor ordered an MRI.
I remember getting that call from our neurologist. Yes the MRI showed a growth in the hypothalamus about the size of an almond. What a shock! The future looked so unsure. But we now had a diagnosis for Monica. Congenital Hypothalamic Hamartoma Syndrome with complex partial seizures. At that point the doctor said the risk of surgery is high enough that if medication would control the seizures we would go that route.
It took us a 4 month period from August to December 2017 to figure out what medications worked. The first medication didn’t make any difference in slowing down the seizures. Those months were extremely difficult because her seizures were getting worse and more frequent. They were mostly at night and sometimes she would have up to 18 seizures in one night. We also did a 5 day stay in the hospital to do a sleep study. By this time we had 4 children and the youngest was just 5 months old. It was hard on the whole family,
When the doctor prescribed the second medication in December the complex partial seizures stopped. We were so thankful! Monica continued to have 1-3 gelastic seizures a day but these didn’t seem to interfere with normal life. She was a brilliant girl, excelling in school and enjoying hunting, baking, swimming, and hand lettering.
We found it best to continue life as normal as possible and not make a huge deal out of Monica’s condition. As she got older she became more self conscious of her gelastic seizures and learned how to hide them so that only people who knew her very well would notice them. But she constantly worried about when would another seizure come?
Life continued to 2022 and Monica is now ten. We now have 5 children. In addition to laughing seizures, the complex partial seizures started returning occasionally. Her doctor had us increase her medications but that didn’t seem to help. By May they were becoming more frequent. My husband and I wondered if it was time to consider surgery. We made an appointment with our neurologist and asked him if it is time to do surgery? He said yes if we are ready surgery is the best route. He referred us to Dr. Warnke at University of Chicago Medicine. I emailed him yet that day and got a reply. We set up a consultation visit for the beginning of June. We had a six hour drive from our house and met with Dr. Warnke. He reviewed Monica’s MRI images and described her hamartoma as a classic textbook case. He was very optimistic in performing laser ablation surgery and said we have an 80% chance of success. We decided to go ahead and schedule surgery. The first available date was August 2. We drove home with a lot to think about but excited at the thought that Monica could be cured.
Finally August 1 arrived and we tearfully kissed our other 4 children goodbye and drove to Chicago. We were apprehensive and Monica was nervous about the surgery. But we had hundreds of family and friends praying for us and we know that is what gave us the courage to keep on.
The laser ablation surgery lasted 4 hours. An area of about 4 inches by 3 inches of hair was shaved off the left front part of her head and an incision the size of the barrel of a pen was made.
What a relief when we got word that all went well and we can go back to recovery to rejoin our daughter. Monica stayed in PICU for 24 hours after surgery and then we were discharged to go home! The doctor had warned us that Monica could have some seizures after surgery and that is normal. Monica did have one seizure on the way home from the hospital but that is the only one to date!
Monica recovered quickly and was able to go back to school like normal the end of August We thank God for every seizure free day and Monica thanks us as parents for going ahead with the surgery. We are in the process of weaning her off her medications.
We have never talked with any other parents who have a child with this condition and would love to. Looking back, I wish we would have reached out to Hope for Hypothalamic Hamartomas for support. There was so much we didn’t understand but have learned a lot through this journey. We have a special soft spot in our hearts for children with epilepsy.
“For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future.” Jeremiah 29:11
Lisa for the Miller family
Your Story Matters – Sharing your HH story with Us
The process of sharing this often difficult journey can be healing for both you and others in our community. If you’re interested, please complete this form and we’ll start the process.