Ehlers Danlos

Anyone else have this Ehlers Danlos diagnosis and what if anything is being done for you? I have GI motility problems, gallbladder tiny stones, pain, nausea and my surgeon refuses lap chole due to ED dx.

Edited May 12, 2010 at 7:08 pm

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Hi, my daughter (13) has Ehlers Danlos- Hypermobility Type,Postural Orthostatic Tachycardia Syndrome, Gastroparesis,Gastritis, Migraines, Arnold Chiari Malformation of the brain. She had her gallbladder out 6 months ago because it stopped working. We did not have the above diagnoses at that time. She is on homebound education, weak, tired, dizzy, nauseous, pain, double vision, headaches and neck aches. Often she is dehydrated and has to have IV therapy.
We are still searching for a doctor to help us manage her multiple symtoms in the Richmond, VA area.

There is an EDS conference in July in Baltimore that we plan to attend. We should learn a lot then.

Which EDS type do you have? Do you have poor healing tendencies?

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I have ehler danlos type III, gastroparesis, small bowel dysmotility, postural orthoststic tachycardia, and on the list goes.

I have been told there is a link with connective tissue diseases with dysmotility problems

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Your symptoms sound just like my daughters. She has been sick since Sept. Today the GI doc started her on Domperidone, hopefully it will help with gastric motility. She eats one meal a day. For the POTS she is on Propranolol which is helping, She just started Midodrine. She burps so much! She was in the hospital two weeks ago because she was so constipated and had to be cleaned out. She also takes Miralax. She also wears support hose to keep the blood from pooling in her legs, and she rides a stationary bike every day so long as her heart rate doesn't get too high. It' been really hard watching her feel so bad and not be able to do what she wants to do. We have seen so many doctors, some help, most don't. The school filed child abuse charges against me-saying that "the child is sick because the mom is making the child sick." That hurt me so much.
I'm still trying to get over that.

Getting back to your gallbladder issues, Hannah recovered from her Lap Chole quite well. Her scars are healed and within normal range. Maybe you could get a second opinion? Avoid fried and fatty foods.
Maybe your Rheumatologist could write a letter to your surgeon with recommendations regarding your ability to recover from the surgery. Do you currently have problems with your skin healing, scarring, or do you have vascular complications?

I hope you are feeling better soon. Try to keep a positive attitude, laugh as much as you can.

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I have both gastroparesis and EDS- hypermobility type (type III). I had my gallbladder taken out 4 years ago, because it stopped working. I also have ulcerative colitis (though there is a debate if that is the correct diagnosis) and complex regional pain syndrome. I had a J-tube placed in December last year, as I couldn't keep down 200 calories. It allowed my stomach to rest somehow, and I can eat tiny meals throughout the day, with severe nausea, but less vomiting. I use my J-tube to get enough fluids still. I believe there are quite a few of us out there, as this is at least the 3rd discussion I have seen about the connection between gastroparesis and EDS. I have thus far recovered from my surgeries well, but have been warned that there is still extra risk for us, so I have decided against the stimulator surgery. Good luck with everything, I am sorry you are suffering from so much!

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I have EDS (most likely hypermotility) w. very severe gastroparesis(I have a J-tube, seperate G-tube and am now on TPN w/ a power port mediport (the more permanent one) I have severe chronic pain, that I can't find anyone to help me with, I also can't get my dr to take out my gallbladder, it's not working and causes severe pain n nausea (they say it's cuz my potassiums low causing the pain??? I think not...) i have had 1 total hip replacement 3 months ago and need the other done in 1-2 years.I am having a medtronic implant put in to help bladder probs. Also have dysautonomia that is hard to control the tachycardia I was on propanalol but it mae my asthma worse. so now i'm on verampamil and fludrocortisone (it's ok, but doesn't help that much) I am trying to lead somewhat of a normal life, I work 2 1/2 hrs per day (but am so much in pain from typing so much and movin around a lot) also have an understanding boyfriend wo doesn't care if we just sit around ro go out and do something. Does anyone have any ideas for pain management I seem to get bounced around from dr. to dr. w no hhelp at all, I saw a supposive connectivetissue dr, but he just basically diagnosed me and now I only need to see him once a whjile like once a year just to see whats going on, continue w all the other specialists and basically just bandag the symptoms.

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My daughter, Lizzie, is five years old. She has EDS hypermobility type like me. I have never had issues with gastro motility, but she has suffered with encopresis since she was an infant. We are now looking for a good pediatric motility specialist. We are thinking of taking her to Dr. John T. Boyle in Philadephia. Anyone have any experience with him? Lizzie has had some success with laxatives, but I am hoping that there is a better solution for her. Prior to getting on laxative treatment, she was malnourished and sick a lot. She has gained lots of weight and is even slightly overweight now so I think that is good.

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also, we are in Richmond, Virginia and are interested in talking to others with children with EDS and motility disorders. Thanks!

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Hi all,
Thanks for all replies. I've read them but just didn't feel up to responding. Seems like the more I talk about all my ills the worse I feel.
I sure wish I could afford to go to that seminar on ED but, no way. Sure would be interested in reading any of the info you receive while attending.
God bless all,

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I also have gastroparesis and EDS III / hypermobility type and numerous other medical challenges. The nausea continues to be a daily problem.

I'm in the UK not sure if there are others with EDS and gastroparesis in the UK, but would be nice to say 'hi' if there are.


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