Brief summary: I have a 5 year old son who have SMEI ( dravet ) He fist seizure started at 4 months after DTP injections. Tryed all epilepsy drugs, keto diet and now trying VNS implant. Looking to chat to any one in the same boat or can give information on our experienc
Derbyshire
( East Midlands
)
Affected Person:
Jan 2005
Family type: Siblings:
1
Disabled siblings:
0
Brief summary: My daughter started with seizures at 3 mths 2 wks after dtp vaccines. Diagnosed with scn1a gene mutation and dravet syndrome. like to make contact with parents in same situation.
Durham
( North East Region
)
Affected Person:
Aug 2003
Family type: Siblings:
0
Disabled siblings:
0
Brief summary: My son is nearly 4 and has just been diagnosed with dravet syndrome. History of febrile seizures until aged 3 when many other seizure types begun. Currently on 2 meds after trying several. No speech and global developmental delay.
Brief summary: My son has had drug resistant epilepsy for years now. Recently we were told he probably has Severe Mylonic Epilepsy of Infancy. He has a moderate general learning disability with autism.WE are looking for advise on the drug stiripentol.
Brief summary: My daughter has Dravet syndrome/SMEI and I run a website support group for parents of children with this condition. Please contact me for more info.
Brief summary: my daughter had first seizure at 3months after her dpt shot. Fevers brought them on. hospitalized once a month for status. On many meds. speech was very delaided other wise grew happy and normal. Uncontrolled seizures. At the age of 18 months she seized f
Brief summary: Dravet syndrome, uncontrolled szs, various types. tried diff meds,wk for awhile then break though szs again. status regular, icu x3 last yr (2oo5). no speach now, attaxia,special needs. gastro tube fitted, swallowing unconrolled, nil by mouth. two other c
Londonderry
/ Derry
( Northern Ireland
)
Affected Person:
Mar 2006
Family type: Siblings:
2
Disabled siblings:
0
Brief summary: Our 3 year old daughter has dravets syndrome (SMEI) and has the SCN1A gene. She goes into status with each seizure. Takes Epilim, Topamax, Stiripentol. Would like to hear from other parents with child who has similar!
Royal County of Berkshire
( South East
)
Affected Person:
Aug 1993
Family type: Siblings:
2
Disabled siblings:
0
Brief summary: My daughter has just been diagnosed with Dravet's Syndrome. 16 years later, first seizures started at 3 months of age, been on every anti convulsant medication, ketogenic diet and tested for VNS. Still having Seizures, but decreasing slightly.
United States of America
( Americas
)
Affected Person:
Jun 2007
Family type: Siblings:
1
Disabled siblings:
0
Brief summary: My grandson David (22mo.),was diagnosed with Dravet Syndrome,SCN1A mutation. He has physical and mental delays. He never crawled and does not sit up on his own. He has various uncontrolled seizures,ataxia,gastric fdg.tube. He has had pneumonia frequently
Brief summary: My Daughter, now 6, has Dravet syndrome, SCN1A muation. Mental and physical delays. I have information on organizations and resources to help you. Feel free to contact me.
You are not alone, Dina
Affected Person:
Jan 2002
Family type: Siblings:
3
Disabled siblings:
1
Brief summary: We have two daughters that have both been diagnosised with Dravet syndrome. The older of the two girl began haing seizures on the week of her first birthday. Our other daughter had her first seizureat the age of six months, three days after her vaccines
Affected Person:
Oct 1992
Family type: Siblings:
2
Disabled siblings:
0
Brief summary: I have a son with Dravet syndrome. I am networked with many parents and professionals concerned with this cause. Contact me for more information about our international organization.
Worcestershire
( West Midlands
)
Affected Person:
Dec 1996
Family type: Siblings:
3
Disabled siblings:
0
Brief summary: my daughter started having seizures at 3 1/2 months soon after her whooping cough vaccine. she is diagnosed with SMEI (davet syndrome) she has tested positive for SCN1a. tried lots of meds and keto diet had most success with diet, but now on steripental
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