Welcome to EDNF Kids & Teens!
As we continue to grow and move to new things in the upcoming weeks and months, we invite each of you to register for EDNF Kids & Teens. We have some exciting things happening, including the planning of your role at the 2008 Learning Conference in Houston, Texas.
We have had our share of growing pains with the website and email. We are trying to rebuild the Kids & Teens database so please bear with us.
To get into our system it will be necessary for your parents to fill out the registrations forms below. If you have any questions at all please email Michele Darwin at
EDNF Kids & Teens Information Sheet
EDNF Kids & Teens Liability & Release
EDNF Kids & Teens Confidentiality Agreement
EDNF Kids & Teens Parent Permission Form
A delay in the onset of walking is common in
individuals with familial ligamentous laxities.Some of the complaints
of ligamemtary laxity are; hallux valgus with metatarsus primus
adductus, hallux limitus, flexor stabilization-type hammertoes, plantar
fascitis, hindfoot degenerative joint disease, derangement of the knee,
clubbed foot, rotated hips, increased femoral anteversion, webbed toes,
curled/clawtoes, in-toeing, or out-toeing, and flatfeet.
Complaints of foot and leg pain and fatigue are common.Cramping of
muscles, particularly at night, is a very common complaint. Pain is a
significant problem. Low muscle tone atrophy. Protective and supportive
measures such as molded ankle foot orthoses many be necessary to
support the child with ligamentous laxity for ambulation and to prevent
injuries.(Agnew P "Evaluation if the child with ligamentous laxity"
Clin Podiatr Med Surg 1997 14 (1): 117-30)
There are no studies to refer to about what effects
nutrition, vitamins, and herbal supplements have on the EDS patient.
But, many EDS patients have had some benefits from certain diets,
vitamins (especially Vitamin C), Zinc, Magnesium, Glucosamine,
Chondroitin, MSM, etc. This is an individual choice. Before starting
any new treatment or supplements always seek a consultation and the
advice from your medical doctors concerning the effects of these
Intracellular erythrocyte magnesium (RBC Mg) for muscle cramps and
migraines were more frequent in Mg-deficient patients. Low potassium is
likely to cause muscle weakness and even paralysis. Coghlan HC, Natello
G. "Erythrocyte magnesium in symptomatic patients with primary mitral
valve prolapse: relationship to symptoms, mitral leaflet
thickness, joint hypermobility and autonomic regulation." Magnes Trace
Chronic recurrent headaches may constitute the
neurologic presentation of EDS in the absence of structural,
congenital, or acquired CNS lesions that correlate with their symptoms.
Individuals with EDS may be prone to migraine due to an inherent
disorder of cerebrovascular reactivity or cortical excitability.
Additional studies are needed to elucidate the pathogenesis of
headaches in EDS.(De Jacome "Headache in EDS" Cephalalgia 1999 Nov; 19 (9): 791)
There are many Chiari patients, who also have EDS. An
added caution is needed due to the diagnosis of EDS. Chiari typically
is treated in one of two
ways: Drug management and/or surgery. With EDS, the surgical protocol
must be altered to protect connective tissue and deal with arachnoid
scarring or adhesions; also prevent cranial-cervical instability. The
surgical techniques are different, too: designed to protect fragile
tissues and prevent or minimize bleeding; and post operatively, there's
more emphasis on preventing or fixing would dehiscence. Seek out and
consult with Chiari-experts before undergoing any treatment or surgery.
It's generally not an emergency, unless you have any of the three red
flag symptoms: choking, breathing problems or drop attacks. Those
indicate more severe brainstem involvement, don't delay in seeking
treatment for them. (Grubb 2002 - Rowe er.al 1999)
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