View Full Version : epilepsy in babies
my doctor thinks my baby might have epilepsy. We are on the waiting list to see a pead. Any info anyone could give me would be appreciated.
beaniebabez
18-11-2008, 13:41
My younger brother was diagnosed with epilepsy at 6 weeks old. He grew out of it by the age of 4. He used to take Carzamazapan(sorry i cant spell it) My brother is now Autistic but only slightly and he does everything normal..Good luck honey.
This might give you some info youre looking for??
http://www.epilepsy.org.au/
hugs i know what your going through, My DD has epilepsy and has done since birth but for the first year we thought it was apnea so she was untreated, She is now on a range of medication and its undercontrol
what is making them think your LO has epilepsy
My niece had her first (grand mal) seizure when she was about 4mnths old and it was a good 6 or so months later when she was finally diagnosed with epilepsy. After trialling many different medications her seizures are under control and she only has a few 'bumpies' (absence seizures) a day compaired to multiple ones in the space of five minutes.
ETA she is now 3
my beautiful little 4 year old neice Isabella has Dravet Sydnrome which is a more serious form of epilepsy as the seizures are very hard to control and it is a progressive disease.
this is a site about Dravet. If your child's siezures are not able to be controlled.. please look into this. it has taken my sis 4 years to find this diagnosis.
and they believe many children with epilepsy are going by as undiagnosed dravet children.
This group is for parents and caregivers of children diagnosed with Dravet Syndrome (formerly known as SMEI - Severe Myoclonic Epilepsy of Infancy) and related sodium channel disorders. Dravet syndrome is a neurodevelopmental disorder that starts in infancy. Severe intractable seizures are the primary symptom.
Information resources presented here are intended to help users better understand Dravet syndrome and related sodium channel disorders. Individuals are urged to consult with qualified health care providers for diagnosis and treatment and for answers to personal health care questions. Any advice given here by parents or other members should be discussed with the patient’s doctors before being acted upon. Information on this Web site is only intended as general summary of information that is made available to the public. It is not intended to provide specific medical advice..
Every effort has been made to ensure the accuracy and completeness of the electronic documents and resources provided on this Web site. However, the IDEA League makes no warranties, expressed or implied, regarding errors or omissions and assumes no legal liability or responsibility for loss or damage resulting from the use of information contained within.http://www.idea-league.org/famnet/index.php
also Dr Wallace neurologist is a fantastic doctor.. but he is in brisbane.. so if you need a good one and will travel.. he is your man.
what is making them think your LO has epilepsy
He has had three seizures in the last to 2 months. He will be falling of to sleep on the breast when his whole body begins to shake. You can't wake him. It last about 30 seconds. He is very drowsy for a few minutes after. We are on a waiting list to see a pead but who knows how long it is. :hair: I don't really know much about epilepsy, only what I have read on the net, which without a dx doesn't help much.
If he has another one i will take him to ANE to bump him up the list a little.
hugs that really sucks that you cant get in any sooner, once you see the pead they wil likely refer on to a neuro as well so there is more wait time
Can you aford to go proivately, if so a GP can do a referal to a pead and you can mkae the appt your self
hugs that really sucks that you cant get in any sooner, once you see the pead they wil likely refer on to a neuro as well so there is more wait time
Can you aford to go proivately, if so a GP can do a referal to a pead and you can mkae the appt your self
Not at the moment .:mad: So wait we must. Hopefully it won't be too long.
:smiliedance: I got a pead appointment for Tuesday. :smiliedance:
Goodluck..Let us know how it all goes:hugs:
Loving5 how did your appointment go?
my sister recently sent me this doco on Dravet.. if you hadnt had a diagnosis yet i was thinking this may be a good information.
http://www.imdb.com/video/wab/vi1351942681/
It went really well thanks Morrigan. He hasn't had a seizures for four months now:smiliedance:. Thanks for the info.
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