Last week, we was another busy week around here. There were 4 medical appointments, including a brain MRI, 8 therapy sessions, Curriculum Night at the elementary school for 2 of our kiddos, and a wheelchair delivery. So here's a recap of the important updates. Last Monday, our 4-year-old daughter, C, had a "quick", non-sedated brain MRI to check on her pineal cyst that was found in her very first MRI when she was 16 months old. A pineal cyst is a cyst that is found in the pineal gland, which is near the center of the brain in the cerebrum. The cerebrum's main function is to control thinking, learning, speech, emotions and movement. The pineal gland produces the hormone called melatonin, which helps regulate sleep cycles. (For more info, you can read more here.) The neurosurgeon had informed us 3 years ago that this cyst was benign and there was no reason to be concerned since pineal cysts are typically asymptomatic. However, he recommended that we should monitor it and repeat the brain MRI once per year to make sure it was not growing in size. So this past Monday was the 4th brain MRI she has had, and we were happy to hear that the cyst had not grown in size. When we discussed the results with the neurosurgeon, he had asked if she was having any headaches or other symptoms. I said no, but asked if her speech delays could be related. I explained that C has been in speech therapy since the beginning of June 2016 and has not made any progress after 15 months of therapy. While he never said it could be related, he did suggest immediately that she should have a 3 Tesla MRI, full brain scan. The 3 Tesla MRI shows the highest quality images. Since C is already scheduled for a full spinal MRI on September 29th, he wanted to add on the brain MRI and have them completed at the same time. We were always assured that there was no reason to worry about this benign cyst, and we therefore trusted what the doctor said and have not thought much about it from year to year. However, when I left the appointment this time, I decided to research what other symptoms are typical of children with symptomatic pineal cysts. Here's what I read from the National Institute of Health website. When a pineal cyst does cause symptoms, they may include headaches (the most common symptom), hydrocephalus, disturbances in vision, and Parinaud syndrome. Although rare, people with symptomatic pineal cysts may have other symptoms such as difficulty moving (ataxia), mental and emotional disturbances, vertigo, seizures, sleep (circadian rhythm) troubles, vomiting, hormonal imbalances that may cause precocious puberty, or secondary parkinsonism. This was quite alarming to me since C has struggled with sleep issues since she was 1, or possibly younger, and has been taking melatonin for several months to help her fall asleep at night. I'm thinking that it's not a coincidence that the cyst located in the pineal gland, which produces the hormone melatonin, is hindering her body's ability to make enough of melatonin on its own. She also has debilitating anxiety, symptoms that point to ADHD, and other "emotional disturbances." It also makes me wonder more about her speech delays since the location of the cyst is within the cerebrum which is the part of the brain that is responsible for speech. Needless to say, I am focused on finding more information and will definitely bring all these questions to her doctor(s) after we receive the results of her MRIs. In other news, the Convaid stroller/wheelchair, for our 8-year-old daughter, E, finally arrived on Wednesday after a 4-month wait. The representative quickly fitted her to be sure it was the correct size and gave me a crash course in how to use it. This device will come in handy when we go on family outings to the zoo, arboretum, and similar places, since E cannot usually walk for very long without fatigue, leg and ankle pain due to having Ehlers-Danlos Syndrome. We will now be able to have longer days away from home, she will be able to participate in activities that same age peers are doing, and it will give her the rest her body requires. She is very excited to have it and loves the color purple that she chose! Now, I just have to find a place to store this beast! While it is easy to push and use, it is quite bulky. As always, thanks for your continued support and for reading! Please sign up for our newsletter on the home page if you have not done so already.
Valerie
9/18/2017 06:11:42 am
My mom had a pineal cyst. She never knew until she was 40 and ended up having emergency brain surgery to put in a shunt. It started blocking spinal fluid from drain out of her brain. She recent had to have it replaced. She new there were issues because of her headaches got more intense, speech slurred, and she became off balance. After a friend's daughter was diagnosed with this same cyst, she did some major research and discovered it frequently becomes symptomatic during major hormone changes (peuberty/menopause). My mom went through menopause at 40. She's also had major insomnia her whole life and anxiety which neither has been resolved. I hope C can get past her challenges and I know her mom is amazing so nothing will end up being an emergency ❤️ 9/18/2017 09:22:24 am
Hi, so pleased to have found you on Spoonie Mommas FB page - we zebras need to stick together. I have shared your link on PainPalsBlog regular feature Monday Magic _ inspiring Blogs for You! Really good to connect, Claire Comments are closed.
|
AuthorHi, I'm Rebekah! I'm a wife, architect, teacher and mother to 3 amazing daughters! Thanks for stopping by my blog, RAISING ZEBRAS! Archives
February 2018
Categories |