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Swara and the Pare Family
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Swara and the Pare Family
We recently returned from our first trip to visit the BPAN speciality clinic at the Children’s Hospital of Philadelphia (CHOP). We are DEEPLY grateful for all of your generosity on this page and support, in the many forms it takes, all of which was instrumental in getting us there and we really cannot thank you all enough!
We spent 6 days in Philadelphia and were able to get acclimated to the time change before her appointment on September 17th. About a week and half before our trip Swara began to have what we suspected were breakthrough seizures. Our neurologist in Hawai’i was not sure if they were seizures so we tried a small increase in her medication and kept our plans to travel. While traveling (and literally while in flight), these episodes increased quite a bit and we were noticing multiple episodes daily. On Sept. 17th, while in the BPAN clinic at CHOP she had several of these episodes. The neurologists in the room where not certain about whether the episodes were seizures so they decided to admit Swara to the main hospital’s neuroscience floor for a long term video EEG. We are incredibly grateful to CHOP’s team of doctors and researchers in the BPAN clinic who assessed the situation and wanted to get answers. We confirmed that these episodes were new seizures and they made a new plan for increased dosage of her medicine. I’m happy to report that as of a few days ago we have not seen any episodes so we are hopeful that this tweak was all that was needed for now.
The BPAN clinic experience at CHOP was amazing. We met with physical therapy, occupational therapy, geneticist, neuropsych researcher, clinical and research neurologist. They were all so knowledgeable, compassionate and helpful. They helped us to understand the nature of their research and it was fascinating and hopeful to hear directly from the experts. There is currently no definite time line for clinical trials but they are working towards those. Swara joins about 60 other patients who have volunteered for CHOP’s ongoing research into BPAN and NBIA disorders. We were able to give blood samples to help advance their research and search for biomarkers outside of genetics. Being in the room with professionals who have seen this before meant more than any words I could ever find. We also got a quick glimpse of another sweet little girl with BPAN who was in the room next to us. While we didn’t get the opportunity to interact directly with her, we recognized her from the BPAN facebook page and seeing her walk past with her parents was such a sweet and indescribable feeling. Her mother and I have been in touch since and it’s been nice to grow connections with other BPAN parents. The isolation that we have felt at times being the first case in Hawai’i took on a new prospective being able to feel a sense of place within a greater community of experts and families who understand our experience thus far as well as some of what the road ahead may look like.
The entire experience of being inpatient at CHOP, while unexpected and not without challenge, was also wonderful. For the first time, Siddhartha, LaLa (my mom who was with us supporting us on this trip) and our good friend Sara (our extraordinary Philadelphia local area angel human being) could come and visit Swara. Our hospital in Hawai’i has strict rules regarding minors visiting so Siddhi has only been able to see her via FaceTime before. It felt so healing to all be able to be together during visiting hours. The child life specialists at CHOP were wonderful and worked a bit with us and Siddhi to normalize the hospital. He was super inquisitive and asked some great questions of Swara’s nurses.
We were incredibly impressed with everyone we encountered at CHOP. We hope to make yearly trips to the BPAN clinic to stay in close touch with the team there. They can also provide support to us and her care team here in Hawai’i via telehealth.
Our deepest mahalos (thank you) to all of you who have helped get us to and from Philadelphia and supported us in the many ways you have. We love and appreciate you!
We spent 6 days in Philadelphia and were able to get acclimated to the time change before her appointment on September 17th. About a week and half before our trip Swara began to have what we suspected were breakthrough seizures. Our neurologist in Hawai’i was not sure if they were seizures so we tried a small increase in her medication and kept our plans to travel. While traveling (and literally while in flight), these episodes increased quite a bit and we were noticing multiple episodes daily. On Sept. 17th, while in the BPAN clinic at CHOP she had several of these episodes. The neurologists in the room where not certain about whether the episodes were seizures so they decided to admit Swara to the main hospital’s neuroscience floor for a long term video EEG. We are incredibly grateful to CHOP’s team of doctors and researchers in the BPAN clinic who assessed the situation and wanted to get answers. We confirmed that these episodes were new seizures and they made a new plan for increased dosage of her medicine. I’m happy to report that as of a few days ago we have not seen any episodes so we are hopeful that this tweak was all that was needed for now.
The BPAN clinic experience at CHOP was amazing. We met with physical therapy, occupational therapy, geneticist, neuropsych researcher, clinical and research neurologist. They were all so knowledgeable, compassionate and helpful. They helped us to understand the nature of their research and it was fascinating and hopeful to hear directly from the experts. There is currently no definite time line for clinical trials but they are working towards those. Swara joins about 60 other patients who have volunteered for CHOP’s ongoing research into BPAN and NBIA disorders. We were able to give blood samples to help advance their research and search for biomarkers outside of genetics. Being in the room with professionals who have seen this before meant more than any words I could ever find. We also got a quick glimpse of another sweet little girl with BPAN who was in the room next to us. While we didn’t get the opportunity to interact directly with her, we recognized her from the BPAN facebook page and seeing her walk past with her parents was such a sweet and indescribable feeling. Her mother and I have been in touch since and it’s been nice to grow connections with other BPAN parents. The isolation that we have felt at times being the first case in Hawai’i took on a new prospective being able to feel a sense of place within a greater community of experts and families who understand our experience thus far as well as some of what the road ahead may look like.
The entire experience of being inpatient at CHOP, while unexpected and not without challenge, was also wonderful. For the first time, Siddhartha, LaLa (my mom who was with us supporting us on this trip) and our good friend Sara (our extraordinary Philadelphia local area angel human being) could come and visit Swara. Our hospital in Hawai’i has strict rules regarding minors visiting so Siddhi has only been able to see her via FaceTime before. It felt so healing to all be able to be together during visiting hours. The child life specialists at CHOP were wonderful and worked a bit with us and Siddhi to normalize the hospital. He was super inquisitive and asked some great questions of Swara’s nurses.
We were incredibly impressed with everyone we encountered at CHOP. We hope to make yearly trips to the BPAN clinic to stay in close touch with the team there. They can also provide support to us and her care team here in Hawai’i via telehealth.
Our deepest mahalos (thank you) to all of you who have helped get us to and from Philadelphia and supported us in the many ways you have. We love and appreciate you!
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