Many people are wondering where the name of the blog, Raising Zebras, came from and why the zebra is an animal that my family identifies with. I'm sorry to keep you waiting!
So why the zebra? It's not something I chose personally but something that I connected with after my oldest daughter and I were diagnosed with Ehlers-Danlos Syndrome (EDS) last year. The Ehlers-Danlos Society uses the zebra as their logo and they explain why in an article on their website [here]. I've taken this quote from their website: "People with the Ehlers-Danlos syndromes and hypermobile spectrum disorders (HSD) often identify themselves as zebras. Medical students have been taught for decades that, “When you hear hoofbeats behind you, don’t expect to see a zebra.” In other words, look for the more common and usual, not the surprising, diagnosis. But many of us spend years pursuing a diagnosis for disorders that aren’t well known. Or aren’t expected in someone who looks normal, or is too young to have so many problems, or too old. Or even, what we might have is considered too rare for anybody to be diagnosed with it. So the zebra became our symbol to mean, “Sometimes when you hear hoofbeats, it really is a zebra.” Ehlers-Danlos syndromes are unexpected because they’re rare." There are other rare diseases and syndromes that identify with the zebra for the same reason explained in the above quote. Our family has a few of these rare diseases/syndromes in addition to the Ehlers-Danlos Syndrome, such as Mast Cell Activation Syndrome, Dysutonomia/POTS, and Food Protein Induced Enterocolitis Syndrome (commonly referred to as FPIES). So the name of my blog was born from the fact that I am raising 3 daughters who have these rare diseases... my 3 amazing, brave zebras! Click on the links in blue for more information and please stay tuned for more! If you'd like to follow my blog and receive notifications of new posts by email, please visit the Home page and scroll down to the bottom to enter your email address in the form. Then click on "Sign Me Up" as seen in the image below. Thanks for reading! Well, as I launch my blog today, I know that there is a great deal of background that may be needed for those who don't know our family very well, and I will get to that soon. For today, I'm going to jump right in to our journey and tell you all about the wonderful experience we had with A's new motility specialist. (In the interest of privacy for our daughters, I will only refer to them by their first initial.) A, our middle daughter and currently 5 years old, was referred to this specialist because she has had chronic, severe constipation since she was an infant. She has seen a total of 3 GIs over the years, and is currently maxed out on the dosages of her 4 constipation medications, yet still deals with constipation. Her current GI has recommended that our next steps would either be to see a motility specialist for motility testing or to consider the MACE procedure.
So August 22nd, we went to the local children's hospital with A to meet "Dr. F", who is fairly new to the area. Previously, Chicago did not have a motility specialist and our oldest daughter, E, who is currently 8 years old, had to travel to Milwaukee in February 2016 for the same type of specialist and testing. So we were thrilled when our GI and urologist told us there was a new doctor here in Chicago. Luckily, our urologist is with the same children's hospital, made the referral, and got us an appointment in only 2 months (he is booking out appointments several months ahead typically). Great news, except E also had an appointment that same day at exactly the same time to have her G tube button changed out at our other favorite hospital across town. Neither appointment could be rescheduled without waiting 3-4 more months. So my husband took the day off from work and brought E to her G tube appointment. These complications in our schedule often arise, and I'm thankful that my husband is able to help like this occasionally. I'm also happy to report that E was amazingly brave with the G tube change... no tears and 3 more months to go before the next change! So back at the motility appointment with A, we met with Dr. F for about an hour in total. He took his time getting all the history and background, read through all the referral notes and medical records, and asked lots of questions. Dr. F was kind, compassionate, very knowledgeable, and had a wonderful bedside manner. He has experience with children on the autism spectrum and was understanding of the limitations we face daily. He assured me he wouldn't suggest anything that would not be practical for us and our daughter (i.e. no daily enemas! LOL!). When we got to the part of her medical history where I mentioned that I have Ehlers-Danlos Syndrome (EDS), that her doctors suspect that she may have it as well, and that we are on a 2-year waitlist to see the geneticist that specializes in EDS, he surprised me with the most wonderful news! He knows and works with this very same geneticist, and together they have treated many patients with EDS! I know the average person won't quite understand how amazing this actually is, but to put it in perspective, most doctors have not even heard of EDS. Yet this geneticist specializes in EDS, is a world-wide expert in this field, and was heading the committee that just published the new EDS diagnostic criteria and several research articles! So this was like hitting the jackpot for our family and an answer to my daily prayers! After Dr. F finished taking all the history, completing the physical examination, and determining her Beighton score for hypermobility, he was in agreement that further GI motility testing is needed, and that she should definitely see the geneticist sooner than later. Her Beighton Score was a 7 out of 9, which is a positive indicator for joint hypermobility, and one of the diagnostic criteria for Ehlers-Danlos Syndrome. So Dr. F wrote a personal referral note to the EDS geneticist and sent it while we were still at our appointment. He said that the two doctors will often do each other favors when referring patients to one another, and that it will hopefully get her an appointment sooner. Fingers crossed, as we have been on the waitlist since March of 2016! In the meantime, Dr. F ordered three motility tests for A: 1. SITZ marker study, while on medications 2. Water soluble contrast enema to assess colonic caliber 3. Anorectal manometry He will likely consider future colonic manometry testing, pending the results of the first three tests. Overall, we were very pleased with the outcome of the appointment and have hope again that we are on the right path to finding answers and a treatment plan. Stay tuned for updates on the testing! Thanks for reading and have a great day! |
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 |