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Dr. Andrew Rynne
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Dr. Andrew Rynne

Family Physician

Exp 50 years

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Suggest treatment for symptoms of Ehlers-Danlos syndrome

Answered by
Dr.
Dr. Diptanshu Das

Pediatrician

Practicing since :2005

Answered : 3807 Questions

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Posted on Wed, 24 Aug 2016 in Thyroid Problem and Hormonal Problems
Question: I am concerned about my premie twin granddaughters who are 3 mos. old. They each have been found to have broken ribs. A specialist on metabolic bone disease of preterm infants let us know that often the mother has Ehlers-Danlos. I have always been flexible, once told by a PT that I have the most flexible elbows she had ever seen. My knees are hyperextended and the thumb and pinkie test I also pass. Or is it fail? My younger daughter is even more flexible than I ever was and has daily pain in her joints at only 25. The twins' mother doesn't exhibit nearly as many signs as I or her younger sister, but she had very flexible hip joints as a child and now she has a thumb that is doing crazy movements when she bends it. In your experience could the twins have inherited this syndrome? I'm just asking if the possibility exists. I took a picture today of one baby curling her toes under and the bend starts way back past the first joint in the big toe. We are wondering whether to pursue this avenue as well as having the babies phosphorus, calcium, mother's 25 hydroxy Vitamin D, etc. tested. We are seeking help from pediatric endocrinologists at this point. CPS has been involved but no court action. Looks like it will resolve with parenting classes and psychologist eval. Of course we want to prove that the twins have a medical condition because none of us would ever hurt a child. And more importantly, they probably need extra minerals to harden their bones. Thank you so much for your time and sharing your expertise. XXXXXXX XXXX
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Answered by Dr. Diptanshu Das 2 days later
Brief Answer:
Each of you need to be clinically graded.

Detailed Answer:
Thanks for asking on HealthcareMagic.

I have gone very carefully through your query. It is apparent that you have had symptoms of Ehler Danlos (hyperextensibility). Your daughter has it (as identified by the doctor). And now, your granddaughters present with some problem of connective tissue (manifesting with broken bones) which is probably due to the same cause. So, there is not much confusion. The degree of involvement may vary. Ask your doctor to clinically grade each of you using Beighton Score and clinical criteria of Ehler Danlos. Get the reports. Based on it genetic counseling should be provided to your daughter and her husband and thereafter suitable interventions may be designed. The summary and reports should thereafter be produced to the Child Protection Services.

Feel free to write back in case of further queries.

Regards
Above answer was peer-reviewed by : Dr. Chakravarthy Mazumdar
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