HollyDay Posted February 22, 2013 Share Posted February 22, 2013 Anyone deal with e-d? I'm not even sure where to start or what to ask for? Quote Link to comment Share on other sites More sharing options...
AngieW in Texas Posted February 22, 2013 Share Posted February 22, 2013 I only know a little and it's only because that was one thing I was researching for my youngest. She is actually hypermobile, but does not have e-d. http://www.mayoclinic.com/health/hypermobility/AN01646 Quote Link to comment Share on other sites More sharing options...
Element Posted February 22, 2013 Share Posted February 22, 2013 Yep, we do. Ask away. Were you (or one of your dc) just diagnosed? Here is a good place to start: http://www.ednf.org/ Here are some threads on the Hive (I just did a Google search for welltrainedmind and Ehlers.) Without knowing anything else about your situation, the first thing I would suggest if you suspect EDS (but haven't been dx'd) is to talk to your primary care doctor about seeing a geneticist. Only a geneticist can diagnose EDS, plus you will want to rule out other similar disorders such as Marfan's. Quote Link to comment Share on other sites More sharing options...
HollyDay Posted February 22, 2013 Author Share Posted February 22, 2013 Yep, we do. Ask away. Were you (or one of your dc) just diagnosed? Here is a good place to start: http://www.ednf.org/ Here are some threads on the Hive (I just did a Google search for welltrainedmind and Ehlers.) Without knowing anything else about your situation, the first thing I would suggest if you suspect EDS (but haven't been dx'd) is to talk to your primary care doctor about seeing a geneticist. Only a geneticist can diagnose EDS, plus you will want to rule out other similar disorders such as Marfan's. Our family practitioner is "almost certain" that is what dd has. We have an appt with a geneticist this coming week. Her orthopedic doc has also said it "looks like e-d" to him. Quote Link to comment Share on other sites More sharing options...
Element Posted February 22, 2013 Share Posted February 22, 2013 Our family practitioner is "almost certain" that is what dd has. We have an appt with a geneticist this coming week. Her orthopedic doc has also said it "looks like e-d" to him. Wow, that is awesome that you were able to get into a geneticist so quickly! We had to wait months. He/she will be very helpful. If they suspect types other than EDS III (hypermobility) they will do collagen testing. The hypermobilility type EDS dx is based on history of pain, family history, and degree of hyperextension of elbow and knee joints. They may do a CMA (chromosomal microarray- it's just a genetics blood test) to make sure it's not something else. The geneticist will then refer you to specialists. If she has a history of headaches with pain at the base of the head, they will probably do a CT or MRI to check for Chiari malformations. They will also probably refer you to cardiology to check her heart and peds ophthalmology to check for lens subluxation. Then you will start round two: PT, OT, and braces.... It's a lot of work in the beginning, getting everything checked out to determine how the EDS is affecting her, but it's totally worth it. We just learn a little bit more every month and deal with new issues as they arise. Quote Link to comment Share on other sites More sharing options...
Tiramisu Posted February 25, 2013 Share Posted February 25, 2013 I'm watching for EDS in my dc. If they have it, it comes from dh's family. It could be benign hypermobility, but since it caused a spinal problem in dd, it doesn't seem benign to me. In dh's family there is a history of joint problems, back issues, and pregnancy complications. Because there is no history of cardiac problems, I haven't pushed for a dx yet. We're actually have a visit scheduled this week for orthotics and I'm wondering if we'll get any helpful information. Quote Link to comment Share on other sites More sharing options...
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