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Talynn, 3 years old, 2 years old at time of Best Practice: “Talynn has severe low muscle tone. To help with this, we see physical, occupational, speech, and vision therapists every week. Has Talynn’s gotten older and bigger, she has improved a ton.”– Taylor

Molly, 2 years old, 2 years old at time of Best Practice: “They think Molly is not progressing enough to have physical therapy. We are still working with her.”– Crystal

Okke, 5 years old, 3 years old at time of Best Practice: “Okke had problems with the processing of touches. Teachers of him implemented Sensory Processing. During the brush therapy and deep pressure therapy Okke get many incentives in a short time. His body was processing these incentives. The goal was to process sensory stimuli  adequately in the brains through play. This has really helped Okke. He reacted not frightened and shocked any more when we touched his hands, he was more concentrated  and established attention to certain things much better. – Sünne

Stephanie, 4 years old, 2-4 years old at time of Best Practice: “Trying to find motivation that will keep her interested in working during pt. She’s either too happy and wants to just stare around the room giggling or gets too upset and had meltdown, throws up etc. Have a great pt who has figured out how to make her laugh and knows what spots to tickle that cause her to move the leg he wants her to move etc. we have gone from ten minute appts to 50 mins.” – Kathy

Molly, 2 years old, 2 years old at time of Best Practice: “Molly is just on baby foods. Trying occupational therapy to help her eat more solids.”– Crystal

Gracelynn, 18 months old, 12 months old at time of Best Practice: “Because Gracelynn spent so much time from 5 months to 12 months she had become very passive about communicating her wants and needs she did not take active participation in play. These problems were compounded by the fact that she has very low muscle tone and struggles to keep her head up and does not sit by herself or roll over. Any time we attempted therapy she would vomit. Having the full support of early intervention along with a nurse speech therapist occupational therapy and physical therapy we were able to slowly help Gracelynn build the necessary muscles to participate in active therapy without vomiting daily therapy has helped her to progressed tremendously.” – Judy

Xan, 5 years old, 11 months old at time of Best Practice: “[Xan has low] muscle tension. Through doing yoga daily it has transformed Xan’s life in many ways! It gives Xan’s body a chance to release built up tension and stress! Oxygenate the cells in his body through breath work. Release emotional energy. Yoga brings peace to both body and mind. Which is crucial for a child that has to overcome and endure many struggles within this particular syndrome. Making sure his diet is clean and fresh is all part of his Yoga practice. Healthy body healthy mind. Xan has gained so many benefits from practising special yoga, by getting the body in a flow of physical movements (mostly with my aid) he has built muscle and found much strength. His internal system benefits as the energy flowing through him recharges and oxygenates his cells fighting off illness and building his immunity! Xan has been in hospital only once at the age of a year this was before he had his diagnosis and they wanted to run tests and observe him! He has never been admitted into hospital for any illness! He has ever had any chest infections. I make sure he takes lots of vitamins and eats only organic food. Yoga and a healthy diet I feel has been a wonderful way to keep Xan well.”Danielle

* 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.