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.
Here we want to present some BEST PRACTICE (BP), experiences and discoveries, things, big or small, that the child’s parent, caregiver and doctor did to improve various symptoms and prevent complications.
» Go to Best Practice: Feeding, Nutrition & Gastroenterology
» Go to Best Practice: Therapies
AIMS of publishing Best Practice
We parents and caregivers, are always looking to find the best way to improve the life of our BOS child. By collecting and sharing 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.
METHODS
The results are based on an online survey “Best Practice for Bohring-Opitz Syndrome”. We gave parents and caregivers of BOS children, who are united in our support group, the opportunity to contribute to this online survey.
In the survey we asked for the age, gender of the child and how he/she was diagnosed with BOS. We also asked for the age of the child at time of the BP. Parents and caregivers are given the opportunity to share up to three experiences of best practice by explaining the subject, the problem and what solved the problem – the BEST PRACTICE.
Results
We note that the vast majority of BP are in the field of gastroenterology and that therapies were submitted. This reflects very well, what parents of a child with Bohring-Opitz Syndrome 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.
ACKNOWLEDGEMENTS
We thank the children and their parents for participation in this study.
SOURCE
Online Survey ‘Best Practice for Bohring-Opitz Syndrome’, http://bohringopitzsyndrome.polldaddy.com/s/best-practice-for-bos,
January 5th, 2015 – March 15th, 2017.
* 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. Please keep in mind that Bohring-Opitz Syndrome is very rare and there is still little known about the clinical management of children with Bohring-Opitz Syndrome. These Best Practice results, experienced by parents, caregivers and doctors worked for this specific child. Therefore we think it is important to present, to discus and to consider these findings. However, 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.
The material and content on “Bohring-Opitz Syndrome – A worldwide exchange of information and awareness” is for information only and not intended to be a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.
Bohring-Opitz Syndrome 