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.
Today, our 5-year-old daughter, "A", had outpatient surgery to patch a hole in her eardrum and to reduce the size of the turbinates in her nasal passage. We are hoping that the nasal surgery will improve her obstructive sleep apnea, which will be tested in sleep study in about 4-6 weeks. Needless to say, she was not excited about today's agenda and was very disappointed that she couldn't drink her "milk" this morning (which is actually a pediatric dairy-free supplemental formula). She didn't need to check in for the surgery until 10:00 am, and we were hoping she'd sleep in like she has been wanting to every school day. Well for those you that know us well, I'm sure you can predict that our wish did not come true. She was up by 6:30 am! So we had to distract her from wanting to drink her milk or eat breakfast for 3 hours. We thought she was handling the news of having her "ear fixed" pretty well, until it was time to leave. Her younger sister tried to console her, but eventually Dad had to just carry her out to the car, which broke my heart. During the car ride, Dad started playing the I Spy game. Thankfully, she calmed down and even had a bit of fun. After she got checked in and changed into her gown, they gave her some happy medicine to calm her nerves. She also got her polar bear and Skye from Paw Patrol ready for the procedure too! Thankfully, the procedure was complete in under an hour and Adam was able to join her in the recovery room. I'm happy to report that all went well and she is resting at home now. She'll be back to herself in no time!
In other news, I received a very exciting phone call this week. The geneticist's office, that specializes in Ehlers-Danlos Syndromes (EDS) that I mentioned in my first post, called this week to schedule A's evaluation with the geneticist and the physical therapist at his clinic! Our prayers were answered with the help of the motility specialist making the referral to the geneticist. She got bumped up on the wait list, and after 18 months, we finally have an appointment for her on October 2nd! I am so excited to finally meet this doctor after all I have heard and read about him. I feel like we are meeting a celebrity! Well, in the EDS world he kind of is a celebrity. He was actually awarded a Lifetime Achievement Award today at The Ehlers-Danlos Society Global Learning Conference taking place in Las Vegas this weekend. So October will hopefully yield long-awaited answers for A. We will also be meeting with the motility specialist on October 11th to review all of the motility testing results. Fingers crossed for a positive treatment plan moving forward! Please check back or subscribe to my newsletter to stay updated! If you are interested in learning more about the Ehlers-Danlos Syndromes, please visit the The Ehlers-Danlos Society's website. www.ehlers-danlos.com |
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
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