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ktdommer

Does anyone have EDS or Chiari Malformation?

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I haven't been here for awhile as life got crazy with husband's cancer- he is doing fine, and son's Chiari discovery along with my EDS diagnosis and now his.

 

Sort of ironic that I battled Lyme for 5 years and got better, only to learn reasons for my flexibility and stretchy skin along with popping joints that go back almost 40 years. Recent easy ankle fracture and slow healing.

 

My son is now 21 and has been living back at home as a necessessity. He didn't qualify for disability and at the time we didn't know about his Chiari or EDS.

 

Yesterday I was watching an amazing EDS specialist on a YouTube video and on his slides popped up PANDAS. He says he has several patients with EDS and PANDAS.

 

So on the search to get son well, we explored autoimmune encephalitis at the Cleveland Clinic. Doc ordered blood work which ruled that out. The ordered MRI with contrast showed. Chiari Malformation which lead to neurosurgeon and a flow study. We then went to CHiari specialist at the CC. Advice is to come back in a year. I'm looking into a third opinion and getting the Cadillac of testing done where he is sitting up for flow study of CSF. Sort of dumb to do this laying down which is not how the Chiari sits when upright.

 

My son is not taking a single med. no therapy or anything. He is working part time and seems happy if social although he will verbalized to me otherwise. We see Lyme doc in April. I'm maintaining on herbs.

 

My next research will be mast cell disorder as VERY often that is found in EDS with POTS.

 

I hope everyone is doing well on the journey with chronic illness. I had no idea that 12 years later I would still be fight for answers and fighting to find educated docs on another rare condition!

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EDS comes up almost every direction I turn when looking at my son's symptoms, but I always think there's no way another rare disease is connected to my family. Who diagnoses EDS? I didn't know Chiari was related, but that is something I brought up to his very unhelpful neurologist. He has not had an MRI yet. My daughter was diagnosed with Pandas, and she was put on a mast cell stabilizer for a little while because she had overnight allergies to everything right after her first recognized Pandas flare. My son has Lyme, a vascular birthmark, is double jointed, both children are constantly covered in bruises with no known cause. I have no idea what's going on anymore, to be honest, but I'm interested in any information you might have about the connections to all these things.

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I find the EDS connection interesting. I had a chiro diagnose me just based on the flexibility of my elbows. I stand with my knees locked and hyper extended and have dislocated my knees with only stretching and not tearing tendons - from a knee injury I was dx with benign hypermobilty but my chiro says it's actually EDS. I don't have overly stretchy skin but it's extremely soft. My PANS son has low muscle tone and so I suspect he may also have EDS if it's what I have. I know low tone in infancy is recognized as early warning sign for ASD as well and a correlation between ASD and EDS has been studied. The gene for EDS could the part of the genetic susceptibility for many of our sensitive children.

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