Benign Familial Neonatal Convulsions Support Group SUMMARY ABOUT THE GROUP
The BFNC & YOU online support group is a private email list consisting of
parents and care-givers of children with Benign Familial Neonatal Convulsions
(BFNC) and interested family members. Researchers and clinicians are also welcome.
Group communication is by a private email list hosted by T.H.E. BRAIN TRUST,
a 501(c)(3) nonprofit organization specializing in internet based and patient
oriented brain related support groups (specifically those related to brain tumors,
brain injury and conditions that share
similarities such as this one).
The BFNC group is facilitated by the mother of three children
with BFNC. We have been learning that this is an inherited condition and many
of the children’s extended family are also affected.
The size of the online group is small due to the rarity of this diagnosis. We
hope to connect with more families out there coping with this diagnosis. Perhaps
we will even reach those who are now adults who may have had it as children
who are at risk to pass it on to their own children.
Messages are presently a few per month.
About BFNC:
Most children are not permanently affected by this condition but they do have
an increased risk for seizures later in life. Some also have the mutated gene
associated with a BFNC diagnosis and suffer from Myokymia (muscle spasms-painful
and usually occur at night and are often mistaken for growing pains), excessive
sweating, migraines (usually occurs later in adult-hood) and myalgia.
There is an excellent description of BFNC at The International Leauge Against
Epilepsy.
http://www.ilae-epilepsy.org/Visitors/Centre/ctf/benign_familial_neo_conv.cfm
Some excerpts from that page include:
“Epidemiology: Since benign-familial neonatal seizures is a rare disorder, its actual incidence is difficult to calculate, but a recent population-based study concerning the population of Newfoundland in Canada found 5 cases of benign-familial neonatal seizures among the 34,615 live births in the center involved (between the period of January 1, 1990 and December 31, 1994); thus, the calculated incidence of benign-familial neonatal seizures was estimated to be 14.4 per 1000,000 live births (Ronen et al 1999). It has been suggested that the disorder may be under-recognized (Zonana et al 1984).”
“Differential Diagnosis: The diagnosis can be made only after other causes of neonatal seizures have been excluded. …"
"Diagnostic Workup: The diagnosis of benign-familial neonatal seizures
is based on a family history, negative laboratory findings, and neuroimaging
examinations. Laboratory evaluations such as serum electrolytes, glucose, calcium,
and magnesium are within normal range. The EEG may be of limited value; it can
be normal or abnormal (Miles and Holmes 1990). If abnormal, the findings are
not diagnostic….”
GROUP FACILITATOR
The facilitator of the group is: Allie Gillies