My family gathered to celebrate Independence Day with an old fashioned BBQ and a tribute to our national colors with strawberries, vanilla pudding, and blueberries served in tall glasses tied with patriotic ribbons and cupcakes for all. It was an enjoyable day.
When the afternoon yielded to evening and the excitement of the day was behind me, my thoughts turned to Rachel.
Rachel has been studying in England for the past three years. She will graduate later this month. I recalled that she was adamant about going to the school of her choice which just happened to be in London, England! I was filled with trepidation and confess a bit worried about how she would manage being so far away at school because of her MG. Thus, with the help of her doctors, we took every reasonable precaution to provide for any care that she might require regarding MG while studying abroad.
Rachel embarked on her academic career with all of the enthusiasm expected of an eighteen year old. We were somewhat concerned about the baggage weight restriction on her maiden journey across the Atlantic because she was weighted down with vials of Mestinon tablets to get her through her first semester! Once settled in, she managed to take the bus, tube and an occasional taxi everywhere that each college student frequents. MG did not deter her from the experience of attending college abroad and all of the adventures that go along with being a college student.
As I reflected on the 4th of July, I realized that Rachel had indeed attained her own independence. She does not refrain from nor is she deterred from doing anything and everything that she possibly can. She gained her independence by a strong will and incorporating good judgment along with her arsenal of MG medications!
My point is this; Rachel does not allow MG to stand in the way of living life – her way. She is an independent young woman and a soon to be college graduate! I am very proud of her.
Hello,
My name is Mary Jo. I was excited to see something that was related to children with MG. My daughter’s story is a bit different in the sense that we were fortunate to have diagnosed quickly. Thankfully!! A year ago November, at the age of 10, my daughter’s symptoms started rather quickly. First was her extreme slurred speech, difficulty eating and drinking, and inability to smile. These were all things we blamed on the fact that she just got braces, so we tried to dismiss it. She quickly lost her ability to do the physical activities and exercises we always took for granted. She has always been strong, athletic, and so healthy. One night when saying goodnight to her, she said something that hit me like a ton of bricks, and everything that seemed so odd, now became clear that there was a serious problem. The next day I took her to her pediatrician, who then sent us to a pediatric neurologist. Within 3 months of her symptoms developing, she was diagnosed by Dr. Fequierre at UAB in Birmingham, Alabama. She was prescribed mestinon and within one hour of her first dose, she was a different child. Seeing her with this “new ” energy made me realize how horrible she must have been feeling, but didn’t know how to express it. We just moved to the Raleigh area and just starting being under the care of Dr. Howard at UNC. We go back to him on December 19, to discuss a plan of treatment. I never realized that there were options for her. I assumed that as long as she was doing well, and she IS doing GREAT, that she would stay on the mestinon, until it was no longer effective. Dr. Howard feels that he can do more for her and that she has even more potential. I am both nervous and excited about this new information. I never made the connection that the mestinon was only helping her symptoms, and that her body was still producing the antibodies. I was just so grateful that the mestinon was was so beneficial for her. My best guess is that the Dr. will want to remove her thymus. Let me just say that the appointment was quite overwhelming for a mom that thought she was only there to get established with a new doctor and at the most, “tweak” her dosage of mestinon. Lots ahead of us! I believe in my heart that we are in the right place and with a very capable doctor. We will have so many more opportunities living in NC than we would have had in Alabama. One thing I have desired is being able to talk with other parents that have children with MG.