April 24, 2012 at 5:58 pm #166JamiesParticipant
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.
JamieApril 26, 2012 at 10:17 pm #2060BarbaraParticipant
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!
(UK)April 28, 2012 at 7:14 pm #2070JamiesParticipant
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.
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