Finding Jakob

A mother’s journey to treat her son’s intractable epilepsy with medical cannabis.

Guest Post by Trudy Latoche

Asking myself: “How did we get here?”

This journey began when we went for a follow-up visit with my son’s neurologist. My younger son, Jakob, has intractable epilepsy, meaning the seizures are uncontrolled and resistant to medication therapy.

I mentioned to the physician assistant that Jakob is having a lot of hand tremors. Sometimes it’s very minimal, but many times his hands shake so much that he has difficulty picking things up and even feeding himself. I mentioned that he is also having difficulty walking now.

He has myoclonic seizures so frequently that he is afraid to walk from room to room without holding someone’s hand for assistance. Where did my little child go? Growing up Jakob was my little wild child. He ran everywhere with no fear! I thought to myself “Is this just the natural progression after years of seizure after seizure?’’

I had asked his school therapists about this overall decline and they indicated that it is very common for kids with neurological issues to lose muscle tone. I was really struggling watching my son deteriorate over time. I thought to myself, “I’m losing him.”

A Side Effect of Topomax

The physician assistant said, “It’s most likely a side effect of the Topomax, but it’s a delicate balance of seizure control vs. side effects.”

It had never occurred to me that this was a side effect of his seizure medications. Why didn’t his doctor’s ever mention this to us?

To top it all off, we didn’t even have seizure control. Jakob was still having 5-6 tonic-clonic seizures a week, hundreds of myoclonic seizures and the scariest seizures of them all – drop seizures – where he would lose consciousness and fall to the ground without any warning. (Learn about the different seizure types on the Epilepsy Foundation’s website.)

I started to search for alternative treatments so we could possibly start to get Jakob off his seizure medications and hopefully minimize the side effects. I feared that they were already permanent.

So Many Medications

Jakob started having seizures at 13 months old and started on seizure medications soon after. We started him on Lamictal because my older son, Aidan, also had seizures and his were very well-controlled using Lamictal.

It took months to slowly increase his dosage to a therapeutic level. If you increase Lamictal too quickly you run the risk of developing a deadly rash.  Jakob would do well for a week or two and then would slowly go back to his usual pattern of seizures.

After increasing dose many times, his neurologist added a second drug, Topomax. Unfortunately, we ran into the same issue with Topomax and so we added a third drug and then a fourth all the way up to six seizure medications!

We kept asking, “Why can’t we remove some of the medications?!”

The neurologists would tell us it may be the combination of medications that help to control his seizures, so we do not recommend removing any.  Meanwhile each of these medications has serious side effects. All of them are depressants and cause drowsiness. Jakob was in a permanent zombie-like state. I would look at my son and see that dull look in his eyes and wonder, “Where did Jakob go?” He took frequent naps all day long.  Meanwhile we still weren’t seeing seizure control.

Enter Charlotte’s Web

I heard on the news about this little girl in Colorado who was using a cannabis strain called Charlotte’s Web to treat her epilepsy and it was working! Families were moving to Colorado just to try using medical cannabis for their children. I started researching and seeing that this treatment really holds some promise.

Meanwhile the state of Pennsylvania passed a law allowing medical cannabis, but dispensaries would not be operational for another eighteen months at least. I had no idea how to go about getting this treatment for my son. 

Pennsylvania created a Safe Harbor provision so that you could obtain medical cannabis outside of the state and use to treat kids in PA without being prosecuted, but how do you obtain it since it is still federally illegal to transport across state lines?

Our Search Continues

My mother and I went to an Autism Speaks meeting and met another mother who was already using medical cannabis for her daughter. I watched a video of her daughter, Hannah, having a drop seizure and felt an instant connection. My mother and I looked at one another and said “That’s just like Jakie” as we cried.

I couldn’t wait until the end of the meeting to go up to the mother and ask a million questions. She gave me her card and encouraged me to reach out to her. She provided me information about a neurologist who was supportive of using medical cannabis to treat epilepsy and pointed me in the right direction on how to obtain medical cannabis from reputable sources.

New Treatment Plans

As you might expect, we switched to a new neurologist and discussed our goals for Jakob’s treatment with her. We went over all of Jakob’s medications and the multitude of side effects that he was experiencing.

We were pleasantly surprised when our new neurologist suggested that we start weaning one of the seizure medications and to pursue the use of CBD oil. She asked, “What medication do you want to start weaning first?” and I immediately said “Topomax!” (thinking back to what the physician assistant had said years before).

We started slowly weaning the Topomax and immediately began to see some benefits. The hand tremors stopped altogether! Jake also started walking with more confidence then he had in years. I was starting to see signs that the old Jakob was still in there.

CBD Oil

We started Jakob on Haleigh’s Hope organic hemp oil. I poured over the company’s secure Facebook group page to research and find out as much as I could. The dosing guide indicated that we would see cognitive benefits within two weeks. I thought, “Two weeks, really?” What kind of cognitive benefits would we see?

We were pleasantly surprised as everyone started to notice that Jakob was more alert, had better eye contact and overall better focus. We slowly increased his dose and eventually started him on the 15:1 oil (15:1 is the ratio of CBD to THC. THC is the psychoactive component in cannabis).

We started to see Jakob develop extreme tiredness and drooling. We checked his medication levels and found out that the CBD oil was causing one of his seizure medications, Onfi, to increase to a toxic level in his bloodstream.

Weaning Medications

We had already completely weaned Jakob off the Topomax, so we started to wean him off the Onfi. The neurologist gave us a schedule recommending weaning by 5 mg alternating by morning and then evening dose. We dropped by 5mg the first week and started to see clusters of seizures like we had never seen before. He was seizing every few minutes all day and all night. I thought, “His poor little body. He cannot continue to go through this.” 

I researched and found that Onfi is a benzodiazepine and is highly addictive, therefore withdrawal is very extreme.

As I talked to other families that had already gone through this, they recommended two things:

1. Wean very, very slowly and
2. Add in other cannabinoids like THC or THCa. 

We slowed the process down – as slow as we could – and this reduced the withdrawal, but he was still experiencing so many seizures. I was desperate to help Jakob as much as I could to get through this.

We started adding in THCa and then eventually THC as the dispensaries finally opened in PA!

The first time we added in THC, Jakob was seizure free for a week! We couldn’t believe it! 

We slowly decreased Onfi over a year and a half from 30 mg twice a day down to 5mg in the morning and 6.25 mg in the evening. We are still in the process of weaning and although Jakob still has bad days, the process is much more manageable. 

Jakob is now walking completely on his own and if I try to reach for his hand, he pushes my hand away as if to say “Mom, I got this!”

We still have several other medications to go and we know it will not be an easy process.

I have renewed hope that things will get better and better with the help of medical cannabis to keep the seizures at bay. I now see a light in Jakob’s eyes that I haven’t seen for a very long time.

Medical cannabis is helping me to find Jakob again more and more every day.