Our Mr. Max was born on August 25, 2009. Besides a little morning sickness in the beginning, I had a wonderful pregnancy, and his delivery was without any complications. His big brother, Jack, dad, and I could not wait to meet the little man that was going to complete our family. Max was born a beautiful, towheaded, bright blue-eyed, healthy boy weighing in at 8.4 pounds.
Max was a pretty mellow baby. We always joked that he was just kicking back, watching the show, and thinking about how he’s going to raise hell when he gets older. He ate well, but spit-up after every meal. I had mentioned it to his pediatrician, but Max was putting on plenty of weight, and healthy, so it was never a concern.
Max hit all his milestones on time, if not early. He sat at 6 months, walked at 12 months, and began saying words at an appropriate time. He had a very large vocabulary (loves to talk) at a young age that I have always contributed to having an older brother.
Sleep has always been an issue for Max. He always seemed to fight sleeping, which was always frustrating for us. At 2 years old, he decided to stop taking naps, and even though he still needed them, we could do nothing about it. Still to this day, he has a hard time getting comfortable at bedtime. He’s very particular and sensitive about the way things feel and gets hot often. Bedtime is always a process and it is important for him to have a routine.
Max has always gotten what we call the “giggles” before he falls asleep. When he was younger, my husband and I used to always smile and chuckle at one another when he would start cracking up, because we knew he was going to fall asleep soon. At the time, it was adorable, and we thought it was his cute little thing he did to decompress for the day, so he could sleep. Max also wakes up in the middle of the night hysterically laughing. He will immediately go back to sleep and usually does not remember. I can’t tell you how many times we have to warn people who are staying at our house about his “giggles” so they would not be alarmed.
Fast forward to when Max is 9 years old and in 3rd grade…. He is a handsome, loving, kind, loyal, and very stubborn boy. Max loves legos, country music, singing, reading, dirt bike riding, camping, and his friends. Max’s behavior has always been challenging, but in the last year he had increasingly gotten more argumentative, irritable, and just plain difficult. He was really struggling socially, and was very sad and depressed. He had been singled out as a “trouble-maker” and being “mean” and his peers where not responding positively towards him either. He was in a really bad place that was simply heartbreaking to see. We knew he needed some help getting back on the right path, we just didn’t know how to help him.
Everything changed in November of 2018. My husband and I were laying on the coach with Max watching the CMA awards. Max got the “giggles” that turned into a chatter, and he stared off at the wall unresponsive. After (less than 30 seconds) looking confused, he went to his room to change. I soon found out that he had wet his pants.
After some questioning, he divulged to us that this was not the first time he had an accident after getting the “giggles”. We knew something was wrong. I immediately called the advice nurse who made me an appointment with a pediatrician the following day. The pediatrician was not convinced he had a seizure, but thought it would be worth doing an EEG.
In the meantime; a friend had sent me some links to check out. One of them was for gelastic seizures. When my husband and I read about the symptoms and watched the videos, we were floored! Max had so many of the symptoms, and we had always thought he was the only kid that did this. So, going into the EEG, we knew that if nothing showed up (gelastic seizures usually are not detected), it did not mean we were out of the woods. Max’s EEG went well. He actually got the “giggles” and fell asleep during the test, so I knew we would get accurate results. Max’s EEG results came back normal. After voicing my concerns that what was going on was not “normal” and mentioning gelastic seizures (his doctor had never heard of them), his pediatrician referred us to a neurologist to discuss our concerns.
Less than a week after, we met with an amazing neurologist. He spent over an hour with us listening to my concerns. I showed him video recordings of some of his night time episodes, (laughing and talking in sleep), and he let Max tell his story. Because HH’s are so rare, the neurologist did not think Max was having gelastic seizures, but he still wanted him to have an MRI to rule it out. The evening Max had his MRI, his neurologist called us to confirm that Max had a small benign (about 1 cm) tumor in his hypothalamus that is a hypothalamic hamartoma (HH). As a parent, nothing can prepare you for hearing that kind of news. I heard nothing else of that conversation….my mind was going a million different places.
We got the news that Max has an HH in early December of 2018. A lot has happened in the few short months since then. One of the first things I did was request an IEP (Individual Education Plan) assessment through his school. Having worked in the special education system for several years, I knew that there would be help for him through his school. I had many behavioral, and academic concerns for quite some time, and after his diagnosis, it all was making sense. Through his IEP, Max not only qualified for behavioral and counseling services, but we learned some valuable information about the way he learns and his memory. Consistent with HH patients, we learned that he was showing weaknesses in his attention, processing speed, auditory processing/ memory, and cognitive abilities. Although, he is presently at grade level and does not qualify for educational services, he has them available in the future through his IEP.
Max also met with an endocrinologist, who determined that he was in precocious puberty for about a year. He had surgery to have the Lupron implant placed in his arm to pause the hormones. It took about 2 weeks to start working, but we noticed a huge difference right away. He is still difficult, but to a much lesser degree. His anger, and irritability are much more manageable.
Right now, we are in the process of trying some different medications to see if anything controls his seizures. At this point, we haven’t found anything that controls his gelastic seizures. For Max, I know that stress, anxiety, and being fatigued trigger his seizures, so we are just trying to find different ways to manage those triggers. My next goal is to try some CBD oil, and see how that works for him.
Max is in a pretty good place currently. He has developed some strong friendships, which has been so great for him. He has always been and incredibly social child, but at the same time struggles with a lot of social issues, so any success in that department is huge for him. He also made some positive strides at the end of the school year, which also helped with his self confidence a lot. Although, he is sad and sometimes mad about his condition, he has also been empowered by it. The day he sat in front of his 3rd grade class with Sierra Crisp’s book to share what he was going through with his classmates…..that was a very proud mom moment! He was not ashamed, and owning it! I feel like that is a step in the healing process.
Thus far, the hardest part as parents has been just not knowing what the future holds, and not being able to fix our child. Knowing things are going to be difficult for him, we have to continue to be strong, always fight for him, and encourage him. We have to continue to remind him he is brave and can do anything! As hard as it can be sometimes, I continuously remind myself how lucky we are and the many things we have to be grateful for.
For any parents that have a child recently diagnosed with an HH, my advice would be to always advocate for your child. There are resources available through the Hope For HH website (email: firstname.lastname@example.org) and the online community. Ask questions, stay strong, and trust your gut. Find support where you can find it because you deserve and need it.
I would like to say thank you to this wonderful Hope For HH community. Reading all your stories has given us hope and comfort.
The Lang Family