February 5, 2012

A mother’s Love
Maternal instinct drives mom to be an advocate for her young son
By DELANIA TRIGG, Assistant Editor Gainesville Daily Register

VALLEY VIEW — She’s a crusader for special needs children and their parents, but Valley View resident Wendi
Tipps doesn’t think of herself as a hero.

Tipps said her advocacy for her son Landon — a 6-year-old with hypothalamic hamartomas, a rare, neurological
condition — is the result of fierce maternal instinct.

Her efforts, including her volunteer work at Cook Children’s Medical Center in Fort Worth, have earned Tipps
accolades from hospital staff who named her 2011 Family Advisor of the Year.

Tipps, who has two other children, said she never planned to be a medical professional but often finds herself
standing toe to toe with some of the country's top neurologists and other health professionals.

“I'm a high school graduate and doctors (sometimes) ask me about my medical background,” Tipps said, laughing.

She isn't easily intimidated. Tipps asks questions, poses theories and makes suggestions, and although she isn’t
particularly fond of reading, she does a lot of it for Landon.

She sifts through online documents including research papers on genetics but admits she sometimes has to read
the material two or three times to thoroughly understand it.

With her quick smile and friendly manner, Tipps' outlook belies her difficult circumstances.

She’s a super organized and deeply spiritual woman who wears a medallion around her neck with ‘Believe’ inscribed
on it. Above all, Tipps is a parent who tackles motherhood with uncommon zeal.

Ask her about her son’s medical history and she details everything from doctor visits to Landon's surgical
procedures — all 19 of them.

Between her memory and her iPhone — where she stores page after page of Landon’s medical information —
there isn’t much Tipps doesn’t know about seizure disorders, their potential effects and their treatments.

Tipps started compiling her hard-won research a few weeks after Landon was born on June, 2005.

The 7 pound, 5 ounce newborn appeared healthy, but when he was two weeks old, Tipps and her husband, David
Tipps, noticed something unsettling — their infant son was giggling.

The Tipps were perplexed. Laughter isn't normal for a two-week old, they reasoned. They also noticed Landon’s
giggling preceded some frightening neurological symptoms.

“His jaw would quiver and the right side of his face would droop,” Tipps said.

She discussed Landon’s symptoms with his pediatrician but the doctor told her Landon's laughter was likely just his
"way of crying.”

Tipps set aside her fears but was only partially reassured by the doctor’s assessment. Something about Landon’s
behavior seemed unusual. Something was wrong.

Her fears reawakened on Aug. 3, 2006 when Tipps found her son on the floor, his legs akimbo, his face turning
blue. She gathered Landon in her arms and took him to a medical clinic where a doctor examined Landon and
again tried to reassure Tipps.

Landon had a seizure, the doctor said, but would likely not have another one.

Medical staff scheduled an EEG for Landon and Tipps took her son went home. Two hours later, Landon had
another seizure. This time Tipps took him to an emergency room.

Doctors told Tipps her son had epilepsy and prescribed medication to stem the seizures.

It was the beginning of a terrifying pattern.

Landon's seizures came on frequently. Doctors tried combinations of anti-seizure drugs but the episodes continued.

Soon the family learned to watch Landon for signs of distress. His laughter, it seemed, was always a precursor to a
seizure.

Even Landon seemed to make the connection between his preternatural giggle and the onset of a seizure.

“It was so frustrating because he continued doing these laughs at unusual and unprovoked times,” she said. “But
when he might be expected to laugh normally, we noticed he seemed scared and uncomfortable — even as we
played with him and even tickled him. He would only laugh before a full-blown seizure.”

Each episode took a devastating toll on the little boy. His speech and cognitive development slowed. Doctors
inserted a vagus nerve stimulator in his brain to try to stop the seizures, but the device had no effect.

In 2008, doctors performed a series of surgical procedures removing portions of his left parietal and temporal lobes.

Recovering in an intensive care unit, Landon’s laughing episodes increased from six a day to approximately 120.

Tipps and her family were growing desperate and turned to the internet for help.

Her cousin found a website for the Barrow Neurological Institute and recommended Tipps check out the site.

An entry for hypothalamic hamartomas caught her attention. She studied lists of symptoms and even compared the
MRI results of an HH patient with Landon’s MRI results. The two MRI studies were similar.

Tipps believed her son had “99.9 percent” of the signs of HH. She mentioned her findings to Landon’s epileptologist
and within a week, Landon was diagnosed with HH.

His diagnosis answered some of Tipp’s questions.

She learned, for instance, Landon’s laughing episodes are the result of gelastic seizures originating deep inside his
brain.

The next step was a new treatment plan. Doctors sent Landon to an Arizona clinic for endoscopic surgery. The
procedure curtailed Landon’s gelastic seizures. For 14 months all was well.

Landon learned to laugh again without fear. He regained some of his lost cognitive skills. Tipps began keeping
count of his seizure-free days. Cautious hope gradually replaced uncertainty.

Then, she noticed something that stirred old fears. Landon was losing control of his left facial muscles. His cheek
and mouth were droopy. The facial changes weren't obvious at first. Tipps said she thought she might be
overreacting. Then Landon’s grandparents said they’d also noticed the facial drooping.

Within a few months, Landon's behavior changed.

"He started having unprovoked crying spells," she said. "We just kind of played it off as being typical 2-year-old
tantrums. We continued to watch it and we realized he seemed to be on another planet."

When she looked into his eyes, Tipps said her son seemed to be asking for help.

She was grief-stricken.

“You could tell he had no control,” she said. “He looked straight through you.”

The crying and episodes of rage led to another diagnosis — dacrystic seizures.

Landon underwent another endoscopic surgery in New York. this time doctors removed another portion of the
hamaratomas.

The surgery seems to have worked and Landon is doing well.

He undergoes occupational and speech therapy, visits a Corinth equine therapy clinic and attends aquatic therapy
in Denton. Landon loves being in the water, Tipps noted.

"When he first started, you couldn't put him in the pool," she said. "Now he'd be in the pool all the time if we'd let
him."

In addition to caring for Landon, Tipps volunteers at Cook Children's Medical Center.

She served as chair-elect for the facility's family advisory council and chairs the organization this year.

A large part of her volunteer work involves mentoring parents and improving communication between staff members
and families.

She's also dedicated to raising awareness for hypothalamic hamartomas.

"One of my missions is to get other parents and pediatricians aware of hypothalamic hamartomas," she said.

She's also an advocate for online research with one caveat.

"Make sure the information you're reading is accurate," she said. "Not everything you read online is correct. A lot of
hospitals have medical libraries. You can call them and they'll send you the right information."

Being the mother of a special needs child requires patience, love and an innovative response to challenges, Tipps
said.

Tipps said parents can be effective healthcare advocates for their children.

If something seems wrong or out of place, parents should mention it to their doctors.

“Doctors know the medicine,” she said. “You know your child.”

Tipps’ hard work and research helped doctors arrive at a diagnosis for Landon’s disorder, a disease so rare
physicians didn’t even consider it when evaluating him.

Hypothalamic hermatoma is present at birth. The disease causes deep brain seizures and also effects endocrine
system development and function.

The cause is a benign growth of abnormal tissue called a hamartomas in the brain. The hamartomas’ effects often
don’t appear until later in childhood but they can be devastating.

In addition to seizures, children with HH can exhibit growth abnormalities and behavioral problems.

An apparent optimist, Tipps became reflective about her journey with Landon.

She took to heart the story “Welcome to Holland” from the “Chicken Soup for the Soul” series.

In the story, a young mother reflects on life with her special needs child, comparing the experience to a trip to a
foreign country.

Like the author of the story, Tipps said she planned for the birth of her son and was full of expectations and hope.

“When you prepare for a baby, you have plans,” she said. “It’s kind of like taking a trip to Paris. When you have a
child with special needs, it’s like you took a detour to a different place. It's not Paris but it's a beautiful place. In the
beginning it was hard to deal with. It’s like a loss. You have all these dreams for your kid and they are ripped away...
not that his life isn’t beautiful and fulfilled. It is. You just have to find all these new ways to deal with things.”
A Mother's Love
Wendi Tipps plays with her son Landon, 6. Landon suffers
from hypothalamic hamartomas, a rare, neurological condition.
Click picture to enlarge.