• Skip to main content
  • Skip to secondary menu
  • Skip to primary sidebar
  • Skip to footer

PrettyIll

Header Right

Dr. Diana, both a doctor (therapeutic optometrist), and a recovered POTS and ME/CFS patient, offers help and hope for POTS, Dysautonomia, Ehlers-Danlos syndrome, Chronic Fatigue, Chronic Lyme, vascular abnormalities, Fibromyalgia, and Multiple Sclerosis. Dr. Diana is now working full time at POTS Care.

  • Home
  • The Driscoll Theory®
  • Videos
  • Meet Dr. Diana
  • Forum
  • Store

EDS help?

NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › EDS/MS/Chiari › EDS help?

  • This topic has 2 replies, 2 voices, and was last updated 10 years, 11 months ago by Jamies.
Viewing 3 posts - 1 through 3 (of 3 total)
  • Author
    Posts
  • April 24, 2012 at 5:58 pm #166
    Jamies
    Participant

    To Whomever can help,
    I have two children 4 and 6. They have had developmental delays, and symptoms of EDS. I have taken them to genetics twice now. I brought the concern of EDS up the second time and was asked if it is in the family. Since no other family member I am aware of have it, they said they will not even check. Their symptoms are as follows, Born with IUGR for low birth weight, (one child was full term, 4.13 lbs and the other induced at 36 weeks and 3.10 lbs). Both had Hip displysia- treated with braces for 3 and 4 months, one had recent finger dislocation, and mild brake from fall, one had club foot, both have No arch and their Big toe goes under the second toe, I guess from their ankles and feet leaning inward? Both are very veiny, translucent skin, Always bruised, both fall a lot. Hyper mobility in fingers and toes, fingers do that swan like description in one child, arms can hyper extend at elbows, weak eye muscles, Blue scalera, both in glasses, one child had eye surgery for weakness and turn in eye. Dr said eye muscles were frail and tiny. Poor fine, gross, and speech skills. Delays from birth include sitting, walking, crawling, needed finger braces, ankle braces (both). PT OT for yrs. Facial appearance of Vascular type description. Beak like nose, wide close together eyes and stared almost without needing to blink, at birth. Veins all over head, chest, back. One child had blood clot in brain at birth that resolved. Their teeth are all crooked and crowded and came in strange order. EX. molars first, before bottoms and tops. In fact, my 4 yr old just as of 6 moths ago, got the bottom tooth in. (the one that should come in first). Hernia with one child, heart murmur (innocent), Also acid reflux for both. I may be missing some others. I know EDS is hereditary, could it be that there is mild cases in the family and we are just not aware? Does any of this sound like EDS? I am searching for answers, and I feel at a loss. They have some help in school, but my one daughter has focus issues, and behavior problems starting. It seems there is a secondary problem besides these concerns that I have for one. I am not sure where to turn next? Any help, suggestions, answers would be greatly appreciated.

    Sincerely,

    Jamie

    April 26, 2012 at 10:17 pm #2060
    Barbara
    Participant

    Hi Jamie,
    I’m sorry to hear of all the problems your family have, I know it’s a constant worry, especially when you’re not getting answers.

    Regarding the ‘inheritance’ issue you raise, I can only relate my experience, in that, my mother could touch her thumbs onto her arms, she also had a heart murmur and flat feet BUT she was never diagnosed with EDS. I had none of those features and have lived most of my life in a very active fashion and had no idea I had EDS until a head and neck injury triggered a boat load of symptoms (more like a war-ship than a boat!) nearly 10 years ago.

    Since being diagnosed myself, I have been looking at the various health problems that my children (and grand-children) have had and I believe that most of them have undiagnosed EDS. Their issues are nowhere near as extensive as your family’s issues are but I share your concern. I thoroughly understand how EDS can remain undiagnosed, as the doctor will just treat that particular symptom you present with at the time, no-one really bothers about over bendy fingers etc, until they start getting pain in them. I think Dr D’s Theory, that EDS is grossly undiagnosed, is more than likely to be absolutely correct. So your relatives may have had it, unknowingly.

    Incidentally, strange you mention hip issues at birth because my own youngest daughter had ‘asymmetric creases’ which the health visitor said may need to be investigated, as she may need a brace, luckily she didn’t, my older daughter’s hip easily dislocates too. My son has had fatigue issues since he caught pneumonia aged 4, he also never got 2 of his teeth, they just never arrived. My grandchildren seem to have issues which all could be related to EDS, vision, memory, bladder, swallowing, hypermobility, one grandson has quite a few developmental issues (speech, attention, co-ordination, etc) and a growth issue, which are currently being investigated.

    I believe help is on it’s way, now Dr D’s on the case!
    Regards
    Barbara
    (UK)

    April 28, 2012 at 7:14 pm #2070
    Jamies
    Participant

    Thank You Barbara for taking the time to answer me. I have been looking for answers, and I will not stop till I get them. I am sorry to hear about all you have gone through. I trust your health stays strong. I also hope you get all the answers you are looking for as well. God Bless.

  • Author
    Posts
Viewing 3 posts - 1 through 3 (of 3 total)
  • You must be logged in to reply to this topic.
Log In

Footer

PrettyIll.com

This website was created to inform, educate and brainstorm with fellow patients and doctors. The content should not be used as a substitute for professional medical advice, diagnosis or treatment. Readers are encouraged to confirm all information with other sources and their physicians. The creator of this site will not be liable for any direct, indirect, consequential, special, exemplary, or other damages arising from the use of this website.

Twitter: @prettyill

What others say

“Dr. Diana will always hold a very special place in my heart for her selfless devotion to helping everyone, not just the Ehlers-Danlos community. I hate to think what my life would be without her insight and guidance.”

-- Chris Gross

Listings by topic

  • Chronic Fatigue
  • Consult
  • Contact
  • Coping
  • Ehlers-Danlos
  • Fibromyalgia
  • Hydrocephalus
  • Mast Cell Disease
  • Multiple Sclerosis
  • Orthopedic Issues
  • Pain Control
  • POTS
  • Speaking Engagements
  • Store
  • Uncategorized
  • Vascular abnormalities

This work may not be reproduced, copied or used in anyway without the express permission of the author -- that's me © Dr. Diana Driscoll 2020