PMG, Lissencephaly, Epilepsy, Cerebral Palsy, Status Epilepticus, etc.

[Guest guest]

The best thing we can do for our kids is to educate ourselves about

their particular conditions, keep good records, always request for

their medical records, keep seizure logs if applicable. We are our

kids advocates and they really need us to be very knowledgeable so if

they need certain treatments or whatever we will know how to get what

they need for them right away.

The more you know about your childs condition the better you know

what to look for and what would require immediate care.

Believe me I can tell a seizure a mile away. It seems my daughter

has had every kind of them. Unfortunately now her seizures are

uncontrolled and they are tonic clonic. She has also survived many

episodes of Status Epilepticus.

Some things I have learned is that the longer one is in a seizure the

body temperature begins to rise. In these cases the prolonged

seizure causes a fever. Some medical personnell may confuse this and

think the person is having a febrile seizure.

Another thing I have learned is that when in a prolonged seizure the

blood sugar may begin to drop as well. In a person that does not

have history of seizures and their blood sugar drops too low they may

experience a seizure.

Sometimes break-through seizures may occur in those who have been

well controlled on meds, vns, or keto diet.

Those who have uncontrolled seizures, history of Status Epilepticus,

may have a higher risk of SUDEP which stands for Sudden Unexplained

Death in Epilepsy.

I am thankful for every day I have with my precious daughter and

keeping her alive and in the healthiest condition possible is all I

strive for every day.

Sincerely,

Elena mom to Leah 6 yrs with Severe PMG, retractable seizures,

previously failed keto diet, failed VNS, Gtube dependant, profound

mental retardation, many meds, etc, 21 yrs old, and Emilio 15

yrs old.