This past week we took a road trip to the Mayo Clinic with Faith. Our main reason for making this trip was to do a consultation at the Sleep Center. Faith has been struggling with sleeping adequately and efficiently for quite some time now which was confirmed by the sleep study. The sleep study report that was reviewed with us after the study was very detailed so I will summarize the main findings. First, Faith’s sleep efficiency needs improvement. Wow, what a surprise! This is a difficult task due to her difficulty falling asleep and/or frequent wakings during the night. The second finding will hopefully help us to improve her sleep efficiency. The sleep study indicated that Faith has excessive periodic limb movements. Based on the sleep study results as well as the doctor’s observation of Faith, he diagnosed her with myclonus (non-epileptic jerking movements). He has prescribed Faith will a medication that we will give her before bed time that will hopefully help minimize this jerking and allow her to fall and stay asleep.
The myclonus (a neurological issue) finding leads me to the next big issue that was brought to our attention during our visit. We brought Faith’s MRI that was done last December with us. The doctor reviewed the MRI and went through it with us in detail. He determined that there is underdevelopment in Faith’s brain especially in the white matter areas. This explains why her delays are so extensive in terms of her motor development. The doctor also pointed out that the ventricles were larger than they should be at the time the MRI was done. He also noted a thin corpus callosum which we were aware of from the initial MRI report last December. The underdevelopment of the brain leads to immaturity of the nervous system which is why Faith is struggling with many neurological issues. All of this is most likely compounding the sleep issues.
Our visit at the Mayo Clinic was very intensive. Faith went from one test to another and did an incredible job but we know that it was tough on her to go through so much. It was an emotionally and physically draining trip for us as well. We were very impressed with the quality of care and the expertise and commitment of all of the medical professionals that we encountered. We are so thankful for this experience as well as the commitment of the doctor that listened to and addressed many of our concerns. We definitely gathered some information that is helping us to piece things together. We are just beginning to hit the surface in terms of beginning to understand what is really going on instead the mind and body of our precious little girl. We want to do whatever we can to maximize Faith’s potential and improve her quality of life. We hope and pray that we will have the best team of specialists to help us do that.
It has been recommended for us to return to the Mayo Clinic again very soon to address other neurological and developmental concerns as well as other issues that Faith is dealing with. We will need to make decisions about what is going to work out best for Faith and our family in terms of treatment and follow-up. Lots of decisions ahead!
Faith was such a great little traveler!
Ironically, she slept quite a bit during the car ride. We sure did pay the price at night!
Faith has barely slept at night for several days now. We are hoping that we can get her back into a routine now that we are back home and that the new medication may help as well. Sleep will probably always be a struggle but we will continue to do what we can to help Faith get more adequate and efficient sleep.
Thanks for your continued prayers!
Keeping the faith,