Friday, 08 March 2019 11:57

A Little Girl’s Hope: Medical Marijuana

By Agnes King | Lifestyle

Photos by SuperSource Media, LLC.

Kristin Lefebvre (le FAVE) was terrified the first time she saw her daughter, one-year-old Milana, experience a seizure. She packed up Milana and her brother and sister, then 3 and 2, and rushed to the emergency room at Albany Med only to have the doctor send her home, saying it was unlikely to have been a seizure. 

“I’d never seen a seizure before,” she said, “but I knew in my heart that’s what it was.”

Milana had another seizure two days later. It wasn’t long before the doctor agreed, and nearly three months later, Milana was suffering seizures daily. Now thoroughly frightened, Kristin and her husband, Andrew, packed up the family and went to Boston Children’s Hospital on the advice of a trusted developmental pediatrician.

Milana was diagnosed with infantile spasms, a rare form of epilepsy, and furthermore, her condition had a rare presentation, difficult to detect by EEG. Recently, she underwent a new round of genetic testing and it was found that she has MED13L (Mediator Complex Subunit 13 Like) haploinsufficiency syndrome, a newly discovered genetic disorder with clusters of epileptic spasms. 

She also has several other conditions, including severe scoliosis, a cortical visual impairment and a moderate hearing loss. She has gastrointestinal issues and must use a feeding tube. Additionally worrisome is Milana’s brittle bone condition, causing her to fracture easily. 

Milana needs round-the-clock care. She must be held during a seizure so she cannot accidentally cause a fracture or otherwise hurt herself. So Kristin stays home with the children while Andrew works as a special education teacher, a position he began training for not long after Milana was born. Today, Milana is 9 years old, Angelo is 12,  Téa, 11, and little sister Anamaria is now 6. 

“We tried Milana on one medication after another, with horrible side effects, trying to slow or stop the seizures,” said Kristin. “They do a number on your body and brain. I know they hurt her and I would do anything to make them stop.”

Kristin searched online for solutions and came across several Facebook groups of parents with autistic and epileptic children.

“We had put her on a ketogenic diet, which stabilized her, but she was still having seizures,” said Kristin. “Parents on Facebook said they were having good results with CBD oil, so a couple years ago we decided to give it a try.”

Cannabidiol (CBD) oil is a derivative of the marijuana plant and does not have the euphoric, intoxicating properties of tetrahydrocannabinol (THC), according to Saratoga Springs family nurse practitioner Sacamarie (Sasha) Crowley, FNP. She is certified in New York State to write a recommendation (NYS does not call them prescriptions) for medical marijuana and, with Sasha’s help, Kristin was able to procure a medical marijuana card for her daughter and obtain the balm through a local dispensary to apply to Milana’s feet.

Sasha said the laws are different in every state, but here in New York, both the patient and the recommending practitioner must obtain certification through the state department of health before being allowed to access and use medical marijuana.

“Milana is a child with refractory epilepsy seizures lasting anywhere from 30 to 40 minutes, and a poor quality of life that has failed all traditional medicine,” said Sasha. “The risk of trying CBD is low to moderate at best. Kristin saw her suffering and felt she was out of options.”

So they began her on the CBD oil without THC, which gave Milana more days without seizures, but it was not the reduction Kristin and Andrew had hoped. So they tried a different brand, and had more success, a full week without a seizure.

According to Kristin’s online research, a medical marijuana treatment that included THC would be more successful. So just this month, Milana was started on a 20-to-1 ratio of CBD to THC.

Pharmacist Katie Ogden of newly opened medical marijuana dispensary FP Wellness in Halfmoon said, “With children’s dosing, it is best to start low and go slow. There are no clinical counts of anyone technically overdosing on marijuana. There is a chance for elevated euphoric effects, but these can wear off with some time. What’s key is the follow-up. Through follow-up and adjustments, we can find the specific ratio that most effectively treats the patient’s symptoms.”

Additionally, Katie explained that different parts of the plant and different strains of the plant can have different effects. The refining processes used are not all the same, so this can explain why Milana felt different effects between each product.

This is, in part, why ratio dosage is done by trial and error. Another is a lack of data. Sasha and Katie both agree that there are too few studies about the effects of medical marijuana at all, much less for children. Due to federal regulations, almost all of such studies are done overseas. 

But when the right dose is found, the results include relief from seizures and other chronic pain, depression, PTSD, anxiety, inflammation, and certain cancers. Katie recounted a story when a parent told her he was able to bring his autistic son, who had begun a medical marijuana treatment, to a movie for the very first time at 9 years old.

“It meant so much to him. He’d never been able to do that before,” said Katie. “It’s just a reminder of why we do what we do.”

Milana’s parents were told their daughter would not make it much past her first year or two. Now she’s now 9, and between the ketogenic diet and the medical marijuana, she no longer needs the seizure medications that caused painful side effects. But she is still experiencing seizures at great risk, so her family is all in. 

According to Kristin, Milana’s big brother Angelo, who would like to be the next Jim Henson, creates and plays puppets with Milana, showing her the magic in the world. Téa has a gift for drawing and is very compassionate. Her teacher describes her as a good friend to anyone who needs it, and Anamaria helps her friends to shine, encouraging them like a little mama.

“I am so proud of my loving, optimistic, creative children,” said Kristin, “and my husband is a wonderful dad. We’re the only two people who take care of Milana’s needs, and I feel really good knowing that I have a partner in everything. We may never go out to a restaurant together, but with as much love as we have in this family, we don’t need it." 

But the family does need to leave the house to go to Boston or local doctor visits. Milana is in a wheelchair and needs a handicapped accessible van, which is not covered by insurance, so they began a Go Fund Me page at GoFundMe.com/MilanaLinda.

“Bringing Milana out to visit a doctor is hard,” said Sasha, “given her seizures and the other children. Even though Kristin and Andrew have a beautiful system they have worked out together, transportation is a real concern. I have no problem doing home visits, but most practitioners can’t.”

But thanks to medical marijuana, Milana can go as much as a week without life-threatening seizures, and the family hopes they can find a ratio for even longer relief.

Sacamarie (Sasha) Crowley, FNP, is located at 2 Franklin Square in Saratoga Springs and can be reached at 518-646-1971. 

Katie Ogden, PharmD, can be reached at Fp Wellness by calling 518-879-9224 or visiting FpWellnessNY.com/fp-wellness-halfmoon/. 

To learn more about the New York State Medical Marijuana Program, visit health.ny.gov.

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