Teenager: Seizures: cannabis: should I tell doctors?

January 8, 2020 2:31 PM

My 17 year old started having seizures. We've been to ERs, neurologists, had EEG, MRI, and got referred to a leading movement clinic. It's taken me three weeks to get an appointment, but we finally have one tomorrow. Doctors prescribed xanax, which initially worked, but resistance built fast. Then a friend got him high, and the seizures stopped for a few hours, about as long as the xanax worked. I'll be honest, I'd prefer he smoke a bowl than take handfuls of xanax, but it's illegal in this state. How/should I tell his medical professionals? Am I at risk of them calling CPS and removing him?
posted by SecretAgentSockpuppet to Health & Fitness (30 answers total)

I don't think you'd get child protective services called on you if your son told his doctor this in confidence without you in the room. Talk to your son about this tonight, and let him know that you plan to step out of the room at some point to let him talk to his doctor(s) privately about anything he needs to tell them about his seizures.
posted by juniperesque at 2:39 PM on January 8, 2020 [11 favorites]

This is likely highly highly variable on so many different levels, the individual doctor, the social workers involved, local jurisdiction laws and actual practices, opinions of everybody, how the juvenile court is processing things and/or adult courts.

I can tell you dcfs has way more things to worry about than teenagers drug use, but there are so many factors in how far a case goes and why they happen or don't. It could be a major pain. It could lead to criminal charges for your son and or you that are unrelated to dcfs involvement .

I do suggest broaching the subject with your doctor, there are lots of medications that reduce/stop seizures and you can mention what you've heard about marijuana and get his professional opinion. If his seizures are new there are lots of options to try. But your doctor can't stop a possession charge e
if gets one for it. He can't explain/vouch for a positive toxicology test. (Which he can for the xanax).

This is hard. I wish you the best of luck.
posted by AlexiaSky at 2:47 PM on January 8, 2020 [4 favorites]

Is marijuana legal for medical purposes, where you live? In Washington, before it was legalized for recreational use, one could get a prescription for it for certain symptoms, including seizures and related neurological disorders that did not respond to more conventional treatments. This would involve a consultation with someone licensed by the state to write the prescription, who would discuss the relevant health history and issue the prescription, if conditions were met; one would have taken this to a state-licensed medical marijuana dispensary.

You may want to ask your son to discuss this in the abstract with a doctor, in any case. While research is limited, marijuana can have adverse effects on developing brains in teens, than it does on the brains of mid-20+ adults (cite). Discussion about usage is something that a medical professional would do well to be involved in, for the long-term wellbeing of your son.
posted by They sucked his brains out! at 2:47 PM on January 8, 2020 [4 favorites]

You will also want take into account racism, xenophobia, classism, etc when making this decision. Are you and/or your son white or white passing? Do you speak English with the accent of the majority in your region? Are you visibly of a religion that is discriminated against? Are you a citizen? Do you have private insurance?
posted by mcduff at 3:11 PM on January 8, 2020 [23 favorites]

Is it plausible that you took a trip to a legal state?
posted by soelo at 3:14 PM on January 8, 2020 [12 favorites]

Agree that your son should mention this, but also it’s not like options are xanax or weed. Antiepileptics are most commonly used for seizure disorders (benzos actually are NOT). Bring that up also (though I can’t imagine the physician would not also discuss this with you).
posted by namemeansgazelle at 3:15 PM on January 8, 2020 [5 favorites]

I suggest you give CBD tinctures a try. It may be the CBD components of the weed that has been of help for him. Now, a lot of the oils you find in stores are pretty expensive weak sauce. So, if you’d like to give it a try, I can give you some mail-order sources that can provide high-quality tinctures at relatively reasonable prices.
posted by Thorzdad at 3:28 PM on January 8, 2020 [6 favorites]

^After your teen discloses to their doctor, perhaps a CBD oil like Charlotte's Web could be part of their discussion.

See also Epidiolex, "The First and Only FDA-Approved Prescription Cannabidiol (CBD)" anti-seizure drug.
posted by Iris Gambol at 3:51 PM on January 8, 2020 [4 favorites]

Is it plausible that you took a trip to a legal state?


I think that's probably what happened so obviously you have some questions now. Pick the smartest, most sensitive medical professional you talk to---ask to talk 'off the medical record'--and see what s/he says.

This happened just came up because you were visiting relatives in [$state].

You may find yourself flying solo ultimately...but at least you could get some thoughts/guidance/peace of mind.
posted by A Terrible Llama at 3:52 PM on January 8, 2020 [1 favorite]

Also recommending CBD oil just based on the peer reviewed studies I have read, but obviously you should print those studies out and discuss the results/dosage/THC to CDB ratio with your doctor. I believe the article I linked article mentions several different effective dosages/THC to CDB ratios as well. I only say that because I don't know if you'd be able to just pick up any mass produced CBD oil brand and have the same effect these studies display.
posted by Young Kullervo at 4:02 PM on January 8, 2020 [1 favorite]

Annnnd I didn't even see the Epidiolex link but that's awesome.
posted by Young Kullervo at 4:06 PM on January 8, 2020

> Is it plausible that you took a trip to a legal state?

Which state has legal cannabis for 17 year olds?
posted by humboldt32 at 4:22 PM on January 8, 2020 [8 favorites]

Can't believe I'm writing: I'm a neuroscientist but not your ...
Yes, definitely find a way to express it. It points towards a specific mechanism and what (legally) else might help him. Highly relevant.
posted by Dashy at 4:36 PM on January 8, 2020 [21 favorites]

I came here to write basically what ‘they sucked his brains out’ wrote.

As a parent in a place where the government sells legal marijuana, I’m not excited about the evidence in marijuana and the teen brain.

I think your emphasis is on the source of the seizures, and a look at all the helpful treatments. Not just marijuana.
posted by thenormshow at 4:38 PM on January 8, 2020 [2 favorites]

I think the potential medical benefits outweigh the risk, particularly if your son self-discloses to your doctor. I'm biased and ignorant though, being in Ontario. By the way, the legal age here is 19, but if you could plausibly have been here, maybe he could suggest he did it over the border and it wouldn't count?
posted by warriorqueen at 4:38 PM on January 8, 2020

What do you want to happen? If medical marijuana is illegal in your state telling the doctors isn't going to result in his getting an Rx for it. Even if it were legal, no responsible doctor would prescribe it for a teenager without trying all reasonable alternatives first. If you think Epidiolex or CBD oil or whatever is a good option for your son, your can just ask the doctor about it. You don't have to say why. That said, I think the odds of CPS getting involved because your son told his doctor he smoked marijuana once are incredibly small.
posted by phoenixy at 5:00 PM on January 8, 2020 [2 favorites]

I do suggest you find a local group with parents of kids with seizure disorders as they will have lots of experience with your local system, ins and outs of referral processes and stuff like your questions as well.
posted by AlexiaSky at 5:33 PM on January 8, 2020 [6 favorites]

I am not a doctor but have personal experience in this area, and there are various drugs that are used to control seizures. I see you have been to multiple health care facilities so maybe they did already consider other prescription drugs (?).
posted by forthright at 6:20 PM on January 8, 2020 [1 favorite]

Since the state is unknown, the OP mentioned illegal with a possible medicine that works but to garner more medical information, could led to legal ramifications.
I suggest talking to other residents of your state; friends, family etc. This way you can gather information on the illegal aspect and how to protect your family if a CBD or equivalent is sustainable. I personally have heard success stories using cannabis and derivatives in related conditions.
posted by clavdivs at 7:08 PM on January 8, 2020

It's not clear why you want to tell the doctor. I don't see any benefit from it.

It is highly unlikely that your doctor will say, "Oh, if the pot works, just switch to that. Come in for your weekly appointments and I'll monitor your son's condition." That's just not going to happen. Many doctors are happy to look away or brush off marijuana usage, but that is very different from using marijuana as part of a treatment plan.

If controlling your son's seizures is necessary -- and it sounds like it is -- then the doctor is going to want your son to be on a treatment that is legal in your state and that she can monitor. That's not pot.

I guess you could tell the doctor, "Pot seems to be working, so we'll just take it from here and come back if it stops working." The doctor would probably be unhappy about that if they perceive you putting your son at risk.

20 years ago -- before pot was legal anywhere in the US, I believe -- I told my neurologist that I smoked pot occasionally to control neuropathy caused by multiple sclerosis. I wanted him to know. I was an adult, and in a sense I wanted his blessing. He just sort of smiled and said if it works for you, go for it. But that's a very different situation. I was using the pot as a sort of analgesic. It was performing a function that wasn't medically necessary.

I understand that there's evidence that pot can be effective in controlling seizures. But unless you're pretty confident that it's better than all the other treatments out there (not just xanax) I wouldn't go down that route. Ideally you'd find something that controls the seizures even better, and that the doctor can keep track of.
posted by Winnie the Proust at 7:41 PM on January 8, 2020 [3 favorites]

Response by poster: To be fair, Winnie, I don't think I said anything that even suggests that I would ignore medical advice and just get him a pot dealer, or that I considered this as a long term solution to the problem.

The main reason I ask is because we've been logging his seizure activity, when it happens, severity, what he's doing at the time, and how it was treated. At some point, xanax at the prescribed dose wasn't working. There have been days when he would have needed more than triple the prescribed dose of xanax if we had treated every episode with it. His episodes are currently cycling at almost every two hours.

So there are gaps in the data where an episode occurred, but no medication was used.

I'm not suggesting that I would just use pot, or blow off a doctor's advice, it's taken me three weeks to get him a clinic appointment at this clinic. My question was basically "We have found this thing that works because his xanax use was getting too heavy, how or should I tell this provider who is trying to solve my son's problems?"

The xanax was supposed to be a stop gap until we could see a specialist, but nobody expected it would take 3 weeks to get into this clinic. The movement disorder clinic we were initially referred to by the neurologist took a week before they told me they don't treat minors. Then Xmas, NY, etc. This is a bad time of year to get a hard to diagnose problem.

Medical marijuana is legal in Texas for a very few restricted conditions, and only in the prescribed medicine listed above. "CBD" oil is everywhere, but I've only found one retailer who has lab reports for their product, and they're not allowed to sell full spectrum CBD. We were going to go pick up some broad spectrum and try it, but I got the call that we got an appointment, and decided to wait after we saw the clinician. Most of the "CBD" around in Texas is just hemp seed oil, marked up 300%.
posted by SecretAgentSockpuppet at 9:07 PM on January 8, 2020 [8 favorites]

Ask the docs about this newly approved drug, which works on the cannabinoid system.

It's a totally different target for seizures than, say, calcium channels or GABA receptors or sodium channels or muscle relaxants or pH. Really, seizures vary widely in terms of how and where and when and why in the brain. So it totally makes a difference to know that cannabinoids work.

Speaking as not your neuroscientist (and also not an MD) .... I'm pretty sure his docs want to get his brain to stop seizing ASAP. They really need to know this information. Please find a roundabout, euphemistic think to say, whatever, just say it.

honestly, I don't want to be alarmist but at every two hours, I'd be force feeding him the brownies myself untill a doc is on it.
posted by Dashy at 9:45 PM on January 8, 2020 [2 favorites]

You may want to review TexasLawHelp.org's overview: I want help and information on dealing with Child Protective Services, e.g.

DFPS can remove a child without a court order in some emergency circumstances. If DFPS removes a child from a parent or legal guardian without a court order, DFPS must file a SAPCR, request that the court appoint an attorney ad litem for the child, and request an initial hearing no later than the next business day after the emergency removal. DFPS may have the hearing without the parents present, which is called an ex parte hearing.

Much more detailed information is available at: Texas Practice Guide for Child Protective Services Attorneys, e.g.

In all removal cases, the court must make a finding that it is contrary to the child's welfare to remain with the adult(s) from whom the child is legally removed, i.e. the parents. [...] Often it is the cumulative effect of long term neglect, evidenced by filthy home conditions and a chronic failure to attend to a child’s basic needs for food, clothing, medical attention and supervision that results in DFPS requesting authority to remove a child on a non-emergency basis [...]

If there is not an urgent need for removal, DFPS can seek a court order authorizing removal following a noticed hearing. A non-emergency order for removal requires sufficient evidence to prove that:
- It would be contrary to the child’s welfare to remain in the homeof the adult(s) the child is legally being removed from;
- Reasonable efforts were made to prevent or eliminate the need for removal;
- Appointment of the parent or parents as temporary managing conservator of the child is not in the best interest of the child because appointment of the parent as conservator would significantly impair the child's physical health or emotional development.

Ultimately, specific questions about CPS or other related criminal law issues are legal questions, and you can Get a Lawyer to consult with about your specific concerns. My heart breaks for you having to experience this kind of stress in addition to the worry for your child and his health and I hope that he is able to obtain consistently effective treatment soon.
posted by katra at 10:22 PM on January 8, 2020 [1 favorite]

Probably the doctor should know just because of potential interactions with anything else he might be prescribed! Doctors hear about their patients using illegal drugs all the time; they will of course tell you it’s not good for you but they also won’t then prescribe anything that might interact badly with said drug. If you’re white and otherwise not marginalized (and don’t have a nasty ex-partner as the father) a doctor isn’t going to call CPS because a 17 year old is smoking weed.
posted by praemunire at 10:24 PM on January 8, 2020 [4 favorites]

Whatever else, getting off of Xanax can be dangerous, especially after increasing dosages and long-term use. In fact, as it relates to your son's primary medical condition, benzodiazepine withdrawal symptoms can include seizures and death. The potential of seizures alone may mask or amplify existing issues. Withdrawal can also have more severe consequences, and death is a risk.

Apologies in advance if you're already well aware of the severity of withdrawal from benzos, but I mention it because of the overlap with existing symptoms. If you do not trust your medical professionals enough to discuss alternatives to Xanax, or those individuals keep prescribing Xanax, I would suggest doing what you can to keep looking for more competent doctors. It is really not a good drug to take on any kind of extended basis.
posted by They sucked his brains out! at 10:29 PM on January 8, 2020

I absolutely do not think you should mention it. In one year he will be 18, and then this info will not have any CPS risks. People seem very blase about encouraging you to inform the doc, but depending on your state, or the doctor's personal position on the topic, this could be a very big deal and cause you both lots of trouble if the doc reports it. I think your son should continue whatever is helping him and keep the info to himself until he is 18. (I'm an epileptic, but not your epileptic...)
posted by thegreatfleecircus at 6:06 AM on January 9, 2020 [2 favorites]

I can only speak for myself but I would absolutely tell the doctor (or better, have my son do it himself). You did not give your son weed and you are not trying to get him to continually smoke weed. Doctors can do their job so much better when they have all the facts from their patients.

Unless you are part of a marginalized group that is susceptible to discrimination and harsh repercussions, I think the chances of a Dr. calling CPS on a 17-year-old who smoked weed once behind his parent's back are absurdly low, and of that call going anywhere are even lower. Unless you don't feel comfortable with the doctor, I'd go for it.
posted by sillysally at 10:34 AM on January 9, 2020 [1 favorite]

OK good stuff on the medical cannabis angle, but my first thought is why is your kid still on ONLY Xanax, especially if it isn't working? Where is the zonisamide? Where is the keppra? I would encourage you to push with your doctor(s) to try other anti seizure medicines, since your boy is still having seizures.

I have a lot of opinions (and experience) with medical cannabis, and it can be good for seizures, especially when you add a bit of THC in with the CBD. Also, I can tell you which oils or tinctures to use-- it's the best way in my opinion to regulate the dose as best you can-- much better than smoking, and more palatable. But that is all moot if you don't live in a state with legal marijuana.

So get him to a doctor, a specialist even, that will try other pharmacological anti seizure medicines-- because there are a lot out there, and they work pretty well.
posted by seasparrow at 2:36 PM on January 9, 2020 [2 favorites]

Response by poster: Follow up: the nice doctor said there were promising studies on cannabis and seizures, but since thc is illegal in TX...

She did note that us telling her about cannabis use was helpful, and said that gave them good data for diagnostics. They did not put him on any new meds though. They're scheduling him for an in hospital 24 hour monitored EEG, but said it looks like non-epileptic seizures (NES), and they've also scheduled him with a psychologist in the neuroscience department.

Meanwhile, we're up to 8 seizures today, two of them in the doctor's office. I don't know what to do. It's terrifying.
posted by SecretAgentSockpuppet at 2:52 PM on January 9, 2020 [6 favorites]

Thank you for sharing the update. It's great that your interaction with your doctor was positive and helpful. Sorry to hear that your son's seizures are continuing, but it sounds like he's getting good care, which is a blessing.
posted by Winnie the Proust at 1:05 PM on January 10, 2020 [1 favorite]