Show Notes:

-The CDC states:

Nearly 1 out of every 5 children in the United States has a special healthcare need. Children and youth with special healthcare needs (CYSHCN), also known as children with special healthcare needs (CSHCN) require more care for their developmental, behavioral, or emotional differences than their typically developing peers. A special healthcare need can include physical, intellectual, and developmental disabilities, as well as long-standing medical conditions, such as asthma, diabetes, a blood disorder, or muscular dystrophy.

Medically Fragile:

According to https://penfieldbuildingblocks.org/

“A child is defined as “medically fragile” when, due to abuse or neglect, illness, congenital disorder or brain injury, he/she requires medications, treatments and/or specialized care or equipment.”

The American Psychological Association States: Child with Special Needs is “a child who requires special education. Such children may have learning disabilities, intellectual disabilities, physical disabilities, or emotional difficulties.”

According to Mayo Clinic: “Epilepsy is a central nervous system (neurological) disorder in which brain activity becomes abnormal, causing seizures or periods of unusual behavior, sensations and sometimes loss of awareness. Anyone can develop epilepsy. Epilepsy affects both males and females of all races, ethnic backgrounds and ages.”

What is a Tonic Clonic/Grand Mal Seizure?

According to the Epilepsy Foundation:

“This type of seizure (also called a convulsion) is what most people think of when they hear the word "seizure." An older term for this type of seizure is "grand mal." As implied by the name, they combine the characteristics of tonic and clonic seizures. Tonic means stiffening, and clonic means rhythmical jerking.”

What is Cortical Dysplasia?

According to the National Library of Medicine:

“Focal cortical dysplasia is a malformation of cortical development, which is the most common cause of medically refractory epilepsy in the pediatric population and the second/third most common etiology of medically intractable seizures in adults.”

The Cleveland Clinic States:

“Infantile spasms are a form of epilepsy that affect babies typically under 12 months old. They look like brief spells of tensing or jerking and often happen in a cluster or series. If you think your baby is having spasms, it’s important to talk to their pediatrician as soon as possible.”

Tips for parents:

If you think your child is having seizures take a video to show the doctor

Turn baby on their side if they are having a seizure

Advocate for what you need

Keep asking if your don’t like what’s happening

Get second opinions

Find a doctor you feel comfortable with

Find a positive support system

Time the seizures

Trust you know your child

Keto Diet supports a reduction in seizures

Consider a special needs daycare

Bring your own blanket, snacks, slippers, bathroom caddy, robe for hospital stays

Connect via Facebook groups:

-https://www.facebook.com/SUPPORT-GROUP-FOR-FAMILIES-WITH-CHILDREN-WITH-DEVELOPMENTAL-DELAYS-221808500814/

-Parents of children with epilepsy https://www.facebook.com/groups/133744053416359/

-Parents of children for brain surgery https://www.facebook.com/curethekids/

-Infantile Spasms https://www.facebook.com/infantilespasms/

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