Having a child with Bohring-Opitz Syndrome (BOS) is an ongoing learning process and can be challenging at times given the complexity of the illness, especially since there is still little known about the clinical management of children with Bohring-Opitz Syndrome.
We, parents and caregivers, are always looking to find the best way to improve the life of our BOS child. So we decided to give parents and caregivers of BOS children, who are united in our support group, the opportunity to contribute to the online survey “Best Practice for Bohring-Opitz Syndrome”.
This online survey is still open. Parents and caregivers of BOS children are welcome to submit their Best Practice. The link to the online survey can be found within our Bohring-Opitz Support Group.
We are very grateful that numerous responses were submitted! The responses include experiences, discoveries, and things (big and small) that the child’s parent, caregiver and doctor did to improve various symptoms and prevent complications. The vast majority of BP were submitted in the fields of gastroenterology and therapies. This reflects very well again, what parents of a BOS child believe should have the greatest attention. Namely, what can I do with great nutritional problems, and what can I do to make my child’s life better, easier, more tolerable, and joyful, and how can I encourage my child and enrich his world.
Although children who are diagnosed Bohring-Opitz Syndrome (BOS) have a lot in common, each child is different and unique and the variation in level of illness from one child to the next can be great. These Best Practices, experienced by parents, caregivers and doctors worked for this specific child. Therefore, we think it is important to present, discuss and consider these findings. We hope that more BOS children can benefit from these experiences. It is important to realize that given the complexity of the illness of each child, a Best Practice of one patient may not help another BOS patient. Each child should have an individual care plan, which is designed to meet the unique needs of the patient. The plan should be routinely followed, monitored, and adjusted as needed.
By collecting and publishing these experiences we strive to help one another and further encourage doctors and professionals to delve into these ‘best practice’ results, which we hope motivates more future research.
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