Silver Linings

Today was a frustrating day as far as dealing with POTS & our primary care physician. Hannah had her 14 year "well visit". I was very proud of her as she articulated her condition and gave the doctor a pamphlet that was made for pediatric physicians with dysautonomia patients. Unfortunately the lack of depth in knowledge led to frustration on my part as I tried to talk to the doctor about a couple specific concerns. One in particular is when Hannah has a "crash" like she did last week, she may need IV Fluids to help increase her blood volume & blood pressure. Our doctor did not understand this and argued that "Gatorade should be enough". She also insisted we get another neuro work up for symptoms that are clearly from her POTS, but the doctor just doesn't know enough about it to understand the various and complex ways dysautonomia can affect a patient. Here is the SILVER LINING... Dr Crosson (our pediatric cardiologist at Johns Hopkins) came through for us once again. I emailed her with my frustrations and she quickly responded with a plan. She has sent our pediatrician the report from our visit with her, but she agrees that she needs to have a conversation with her to get her up to speed and on board with treatment plans. She also told me that she is doing a special Ped Neuro Grand Rounds next week on POTS. She hopes to bring the neurologists up to speed with the complexities of dysautonomia/POTS. She also hopes to find a neuro that would like to start "specializing" in dysautonomia and taking on these patients. How amazing is that???
It is funny because I have struggled with this disorder for years, but when it became clear that Hannah was also affected...my mama bear instincts kick in. Now I am determined to do everything possible to offer Hannah optimal wellness. With that determination comes extreme frustration with the "bumps in the road", but sincere gratitude to those that have the same goal in mind.
I thank God for how he has provided Dr Crosson to walk through this with us. I pray with great anticipation that He will continue to use us to spread awareness of this complex disorder and find the best possible treatments so that both us and others affected can live life with "a full tank". :)