Guest guest Posted March 8, 2001 Report Share Posted March 8, 2001 Welcome Steph, I'm and I joined the group because my 15 yr. old daughter has HEDS. You'll get lots of great help and support here. My daughter, , has chronic fatigue and was diagnosed with CFS/CFIDS 3 years or so before the EDS Dx. Kate has venous pooling which is sometimes found with EDS & CFS. Do you have this too? I'm asking because there is a doctor at Hopkins who has done a study on this and it might be of interest to you. We live in Sask. Canada so I can't contribute any adivce on insurance. Welcome to the family, Jean ---------- | From: jettagurl87@... | To: ceda | Subject: Hi! | Date: Thursday, March 08, 2001 2:03 PM | | Hi everyone, | My name is Steph, I'm 18, and am hoping to soon get a diagnosis of EDS. In | 1997 I was diagnosed with CFIDS, and in Dec. 1999 I had surgery for Arnold | Chiari Malformation. I have always had problems with hypermobility but they | seem to be getting worse. I'm having a lot of problems wiht my joints | popping out and a lot of pain with that. My family doctor and my physical | and occupational therapists all believe that I have EDS and other doctors | that I've talked to believe that I have it also, so on March 20 I am going | down to s Hopkins to see a geneticist and am hoping to get some answers | then. If anyone has any suggestions on how to get insurance to approve that | visit or any other suggestions for someone who doesn't really have any | answers yet, I'd really appreciate it! | Steph | | Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2009 Report Share Posted May 27, 2009 Hello everyone! I am really excited to have found this group! My hubby, Don, and I are in the process of adopting a 5 month old beauty of a girl named Remington. Remington was diagnosed with MDS at birth. As of now her precentage is around 7%. After a recent visit witht he cardiologists at CCHMC, we have learned that Remi's heart murmur is gone and the hole in her heart has closed up! Yay! We have an appointment next week with a GI doc about her stomach reflux. We are thinking she might have to have a scope done to check everything out. Other than the gastro issues, Remington is completely on target with her age but we have decided to go ahead and be proactive and we will have a developmental interventionist come in from First Steps. It can't hurt! We absloutely love having her and she is such a joy in our lives. We live in Erlanger, KY and would love to connect with others in the NKY region and in Cincinnati! Margroum mom to Remington Quote Link to comment Share on other sites More sharing options...
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