What should people know when Catatonia is suspected and/or diagnosed? Guidance from family members who have been through it

If you are concerned that your loved one may have Catatonia, you should share that with your loved one’s provider. It may be necessary to bring your loved one to your local emergency department if they are in crisis.

Each person’s situation is unique, but you know your loved one best. If you have concerns, you should take them for a medical evaluation. One of the ways to diagnose Catatonia is with an examination, conducted by a medical professional. Sometimes Catatonia presents as though it is a mental or behavioral health issue, which can be confusing to loved ones and providers alike. Our goal with this website is to help provide information that can be useful when seeking medical help.

It’s possible your loved one will be scared of seeking medical help because they are confused, upset and/or don't know something is wrong. They may not be competent to determine whether they need help from a medical provider. This is why your role as your loved one’s advocate is very important. When someone has Catatonia, they likely will not be themselves, and will not be able to function to their typical ability. If you know something is wrong and they need help, you will need to be their voice. Ideally, you will be their Guardian (if it is your child), or if they are an adult, they will have named you as their Medical Power of Attorney, so you are able to help make decisions on their behalf. Often families do not have those plans in place, so you will need to look into this. Depending on the severity of their condition, you may need to file to become their Guardian and/or seek assistance from the court so you can make medical decisions on their behalf. ECT is a procedure that may be excluded from what's typically allowed to be consented to by a guardian. When helping their family members with Catatonia, some of The Catatonia Foundation board members sought legal help to be able to make decisions for their loved ones to ensure they received the appropriate care.

Each person’s situation is unique. If you are concerned about your loved one’s safety, or the safety of those around them, it may not be prudent to leave them alone. If that's the case, you should see a medical provider for help.

When your loved one is not themselves, it can be overwhelming. If you are your loved one’s primary caretaker, much of the responsibility for their care will fall on you. We encourage you to seek help by enlisting other family members or friends to support you as the process can be overwhelming. As noted above, when your loved one has Catatonia, it’s quite likely you will need to be their voice. That may require Guardianship, Medical Power of Attorney, and more. Because Catatonia can be difficult to diagnose, it can take some time – and sometimes, misdiagnoses – before you make progress. We encourage you to do your best to be strong and advocate so your loved one gets the best possible care. You know your loved one best. Remember - Catatonia, when diagnosed and treated properly, has a high cure rate. Each founding member of The Catatonia Foundation board of directors had to advocate, question, make follow-up inquiries, and find allies in the healthcare system for their loved one before they got the important treatment they needed. Don’t give up!

The more information you have on the changes to your loved one’s condition, the better. The medical care team will likely run some tests. Unfortunately, Catatonia does not typically show up on scans or lab tests, so behavior changes and/or the Lorazepam (Ativan) Challenge are the best ways of diagnosing Catatonia. Having a detailed knowledge of their medical history, mental health history and/or list of medications your loved one is taking will be helpful. Having detailed information on your loved one's behavior changes, when they started, how that compares to their normal behavior (baseline) will be helpful. If you believe your loved one could have Catatonia, you should bring that up with a medical provider.

It’s very possible your loved one will see a variety of specialists in the process of getting a successful diagnosis. The first encounter with a healthcare professional may be an emergency department care team, urgent care provider or an internist. When someone has Catatonia, it can appear as though they are having mental health issues or are going through a mental health crisis; therefore, the next step might be to see a psychiatrist or neurologist. When the founding members of The Catatonia Foundation board helped their loved ones navigate the healthcare system, their loved ones were seen by many specialists and care teams in an effort to help them. These included internists, pediatricians, specialists in psychiatry, neurology, infectious disease, urology, and gynecology, as well as hospital intensivists and specialists in critical care and emergency medicine. They also received care from nurses, physician assistants, psychologists, and social workers. One of the main goals of The Catatonia Foundation is to help healthcare professionals recognize the symptoms of Catatonia, and, hopefully, diagnose patients quicker.

Because Catatonia is not well understood, it’s very possible you will be connected with providers or care teams who are not familiar with the condition. You may receive varying diagnoses or recommendations depending on the specialists you see. And more likely than not, you may have to advocate to get to the right doctor or treatment for your loved one. The founding members of the Catatonia Foundation board didn’t take “no” or “I don’t know” for an answer. Our hope is that you won’t either. By helping provide more information on this underdiagnosed condition, we hope to arm you with information, examples, and literature you can use in discussions with your loved one's care teams.

These are some options to suggest to your loved one’s care teams: The Bush-Francis Catatonia Rating Scale is considered the gold standard for clinical and research purposes for Catatonia screening and diagnosis. The Bush-Francis Catatonia Rating Scale was designed by Bush, Fink, Petrides, Dowling and Francis in 1996 and is based on descriptors of Catatonia from the literature. It is regarded as a valid, reliable, and user-friendly Catatonia rating scale. The full scale includes 23 items, observing the patient’s movement, rigidity, mannerisms, and more. Examples include: If a provider notices waxy flexibility (meaning a patient’s limbs resist moving, then release slowly when the doctor pushes against them) and/or catalepsy (when a patient is moved into a specific posture and holds it), that can help diagnose Catatonia. If your loved one repeats words or phrases you say, that is called echolalia and can be a sign of Catatonia. Another test to help diagnose Catatonia is the Lorazepam, or Ativan, Challenge. Lorazepam, also known as Ativan, is a benzodiazepine, a type of drug that acts on the brain and nerves to produce a calming effect. An article in Psychiatry Advisor explains this: "A lorazepam challenge test can be helpful because signs and symptoms of Catatonia are commonly relieved by the intravenous (IV) administration of a barbiturate or benzodiazepine. ..If you suspect catatonia, based on your observation and results of the rating scale, the lorazepam test can be useful....Imagine a stuporous patient not responding, even if you pinch or stick them with a pin. You give them IV lorazepam and they pick up their head 5 or 10 minutes later, look at you and ask, ‘Where am I?’ That’s a positive response and you can treat that patient.”

When faced with medical challenges, it’s not uncommon to seek out second, third and more opinions. Doctors have areas of expertise and areas they may not be as familiar with. It’s perfectly ok to request to see a specialist, or request a second opinion if it’s in your loved one’s best interest. Seek out help from the hospital administration, social work, or care teams to help you find a physician with expertise and experience diagnosing and treating Catatonia. You may also post in our patient and families forums looking for recommendations or check out the experts listed on our resource page.

As your loved one’s advocate, the most important thing you can do for them is speak for them when they cannot. Sometimes that means not taking “no” for an answer! You know your loved one best, and if the proper treatments for Catatonia have not been presented as options, ask about them.

While Catatonia can be difficult to diagnose, the good news is that it is highly curable when the patient receives an accurate diagnosis and optimal treatment. It is critical that patients, their families, physicians and other healthcare providers know there are highly successful treatment options available so that people with the symptoms of Catatonia don’t needlessly suffer or die. The treatment options are dependent on a variety of factors and should be discussed with a physician who has expertise and experience with Catatonia. Treatment options to be considered include: Benzodiazepines: Benzodiazepines are often prescribed when a patient presents with symptoms of Catatonia for the following reasons: The benzodiazepine Lorazepam (Ativan) is often used to make a diagnosis of Catatonia. Following a protocol for administering and increasing Lorazepam, either intravenously or orally, a reduction in the symptoms of Catatonia may occur. This is known as the Lorazepam Challenge. Benzodiazepines are safe as a treatment for patients with Catatonia. Patients with Catatonia can tolerate high doses of Lorazepam. Between 60% and 90% of people with Catatonia will improve when treated with Lorazepam. While Lorazepam is typically the medication of choice for treating Catatonia, other benzodiazepines such as clonazepam and diazepam, and zolpidem may also be effective. Electroconvulsive therapy (ECT): ECT is a treatment in which electrical impulses are sent to the person’s brain through electrodes placed on their head. The goal of ECT is to intentionally trigger a brief seizure that can quickly reverse symptoms of certain mental health conditions. (Note - generally a series of ECT treatments are required.) The person receiving treatment is put to sleep under general anesthesia and wakes up when it is over. An ECT treatment generally take one hour or so in total, including a patient assessment, receiving anesthesia and the treatment itself. The seizure itself tends to last 20 to 60 seconds, but can last as long as 3 minutes. Patients wake up several minutes after the seizure stops. Patients are then transferred to the recovery area. ECT might be recommended if: Benzodiazepines are not effective. The Catatonia is severe. The person has had Catatonia before. Quick action is needed to save someone’s life.

ECT may be a good treatment option when medications are ineffective or aren't tolerated, other forms of therapy haven't worked, or the Catatonia is severe. Unfortunately, ECT has a negative stigma attached to it as the result of portrayals in the media, movies, television, and books. An example is the 1975 movie One Flew Over the Cuckoo’s Nest starring Jack Nicholson in which ECT was used against a patient's will and caused violent seizures. This does not represent modern day use of ECT which is only done (i) with consent (ii) in a controlled environment with medical professionals monitoring vital signs and seizure length and (iii) under anesthesia and with the use of paralytics so the patient is comfortable and safe. Each member of The Catatonia Foundation’s founding board has a loved one who received ECT and that treatment helped them recover from Catatonia. It is considered a safe and effective cure for Catatonia.

The most common side effects of ECT on the day of treatment include nausea, headache, fatigue, confusion, thirstiness, and short-term memory loss, which may last minutes to hours. Some of these side effects can be managed with medication and rest. Typically, after ECT, activities like driving and making important decisions are restricted due to both the anesthesia and ECT treatment.

Our hope is that The Catatonia Foundation will provide current and relevant information about ECT to help alleviate fears and eliminate negative stigma. It may be challenging because when your loved one is experiencing symptoms of Catatonia, they may not have the capacity to understand treatment options. It’s the experience of The Catatonia Foundation board that ECT was a curative treatment for our loved ones who were experiencing severe Catatonia. However, in each situation, we had to advocate for ECT because our loved ones were unable to. Every situation is unique, but if your loved one is experiencing Catatonia, you may need to advocate for ECT treatment on their behalf. ECT does require consent. If your loved one refuses treatment, there are instances where others may be able to consent on their behalf. If there's a Medical Power of Attorney in place, that may be sufficient, although the hospital or state law may require that it specifically addresses ECT. Without a Medical Power of Attorney, it may be possible to obtain Guardianship in order to make medical decisions on the patient’s behalf when they are not able to. You may need to consult with an attorney to help you with this process.

Memory loss is a common side effect, particularly with bilateral ECT. The extent of the memory loss varies with each person. Some people regain lost memories, some may not. The experiences of The Catatonia Foundation's founding board’s family members are that they have memory loss ranging from a few months to a few years. The memory loss typically involves the period of the illness and the ECT treatment. Memory loss may be more significant during the period that ECT is more frequent and may not be as significant as the ECT treatments are spread out. However, the consensus is that memory loss – while not ideal – is preferable to living with Catatonia for the rest of their lives. The risk of memory loss is a factor to be considered along with the consequences of ineffectively treated Catatonia. ECT does not typically cause cognitive impairment. Patients with Catatonia may experience decline in their cognitive abilities as part of their illness which may be improved with ECT. One family member did brain training exercises during their recovery, which appeared to be helpful. It may be helpful for providers to monitor cognitive function during ECT and make adjustment to treatment accordingly. You may want to ask your loved one's healthcare provider about this. ECT may not be the right choice for everyone, but if your loved one has severe Catatonia, ECT can be very effective. It can be especially useful if a patient is suicidal, is not responding to medications or cannot tolerate the side effects of medication.

The healthcare team at the facility where your loved one is receiving ECT will provide instructions for what to expect and activity restrictions on the day of treatment. Driving is typically prohibited. Tylenol may be recommended, along with plenty of fluids and rest. The reaction to ECT varies by person: some people feel ok a few hours after treatment and others need to rest the entire day.

Ideally, the person determined not to be competent has designated an individual to make decisions on their behalf through a Medical Power of Attorney or similar legal instrument. State law or hospital policies may however, override, whether consent by the designated person can be made for a particular treatment, like ECT, unless it's specifically stated in the power of attorney. If there is not a designation of a medical representative, it may be necessary to obtain Guardianship over the person who is not competent to consent to treatment. State law or hospital policies may limit the treatment the guardian may consent to. It may be necessary to obtain the expertise of an attorney to help you navigate the consent issue.

There may be state laws or regulations that govern consent issues if your loved one is unable to consent for themselves. Hospital policies may also have specific requirements for consent if your loved one is unable to consent for themself. The provider will typically raise consent issues and let you know what’s required if consent is an issue. It may be necessary to obtain the services of an attorney to help navigate consent issues.

Consent issues may arise in the following circumstances: Your loved one is a minor and unable to consent for themself - in this case there may be state and hospital restrictions on the use of ECT. Your loved one is an adult and incompetent to consent due to the symptoms of Catatonia - in this case a Medical Power of Attorney, Guardianship or other court order may be required. Your loved one is or becomes an adult and is incompetent to consent due to a developmental or other disability. In this case, Guardianship and/or other court order may be required.

It is important to understand that the costs of healthcare can add up quickly when dealing with a serious medical or psychiatric condition. Recommended diagnostic tests and treatment may require referrals from appropriate providers, preauthorizations from insurance companies, appeals of denials of preauthorizations or payment for treatment, and insurance participation with the specific provider. Some treatment may not be covered by insurance at all and you will have to weigh the options carefully.

Here are some common insurance issues that may arise (Note - this is not meant to be an exhaustive list of all insurance issues you may encounter): ISSUE: High doses of Lorazepam may be denied by insurance companies. SOLUTION #1: The prescribing physician must write the prescription accurately to overcome any objections from the insurance company and/or appeal the decision if necessary. SOLUTION #2: Using a coupon or recommendation from GoodRX may help bring exorbitant costs down to an affordable amount. ISSUE: Consultations for ECT and/or ECT treatment may be denied because the insurance company does not participate with the treating provider and/or healthcare institution. SOLUTION #1: Obtain a new insurance policy that participates with the treating provider and/or healthcare institution. This may require an open-enrollment period. An insurance agent may be able to help you navigate this problem. SOLUTION #2: Ask the billing department from the provider and the insurance company to communicate to determine whether there’s a way to work this out. SOLUTION #3: Find a provider that participates with your health insurance. ISSUE: Insurance companies may limit the number of ECT sessions. SOLUTION: Ask your provider to work with your insurance company to resolve this issue based on medical necessity. ISSUE: Insurance companies may deny medication and/or treatment. SOLUTION #1: Develop a relationship with the appropriate person within the provider network so pre-authorizations and appeals can be done effectively and timely. SOLUTION #2: The provider may have other solutions that you have not thought of so always ask for help.