My child has a fever, and I am worried they may have COVID-19 and will have more seizures. What should I do?
Any viral illness can be a trigger for seizures in some individuals. Make sure that your emergency seizure plan is up-to-date, and if it includes emergency seizure medication, please ensure these are available with an expiration date at least two months away. Also, refer to the resources listed below for further information. Consult your pediatrician ASAP for appropriate evaluation for the fever.

My child is having more seizures than is typical for them. What should I do?
If your child is having frequent seizures and not returning to normal in between seizures, give your child their emergency seizure medication if available, or call 911. If they are returning to normal in between seizures, contact the Neurology office in the morning.

Since my child has epilepsy, is she/he more likely to contract COVID-19?
Children with epilepsy are not at higher risk but some conditions associated with epilepsy maybe at higher risk of severe Covid-19. More specifically, the CDC has issued guidelines stating that individuals with certain disabilities such as cerebral palsy, intellectual disabilities and developmental disabilities may be at increased risk of a more serious COVID-19 infection. Some medications used to treat seizures may affect the immune system (ACTH, steroids, immunotherapy) and may lessen the body’s ability to fight infection. If your child is taking these medications, please discuss this with your neurologist.

How can I prepare to stay at home with my child with epilepsy for an extended period of time?
Talk to your neurologist about getting extra supplies of your seizure medication. If you need a new prescription in the next few weeks, request it early so you don’t run out. Also, consider discussing home delivery options with your pharmacy to minimize public exposure. Stay in touch with family and friends who can check on you if needed.

My child’s seizures are controlled. Do I need to keep the EEG/clinic appointment?
The benefits of the appointments outweigh the risks of coming to the clinic appointment or EEG testing. We ask the appointment be rescheduled if you or your child is ill with COVID-19 or has symptoms of COVID-19. Some telemedicine options may be available for clinic visits.

Is there anything I need to do to protect my child from COVID-19?
Your child should observe the same precautions as everyone else to help prevent the spread of COVID-19.

• Vaccination and boosters against COVID-19 are the best protection from severe illness. If your child is eligible for these were recommend they get them and remain up to date on their immunizations.
• Wear a mask when in contact with others.
• Clean hands often using soap and water or hand sanitizer.
• Avoid people who are sick (fever and coughing).
• Clean and disinfect daily in household common areas which are frequently touched (e.g., tables, chairs, doorknobs, light switches, remotes, handles, desks, toilets, sinks).
• Launder items from an ill person separately from other people’s items.

Is it OK for my child to wear a mask?
Yes. Masks do not put your child at risk for having a seizure. In the event your child is wearing a mask at the time they have a seizure we recommend that the mask be removed as part of caring for the seizure.

Does having migraine increase my chances to become infected with COVID-19?
No, having migraine does not increase your chances to become infected with COVID-19 nor it’s variance. Most patients with migraine should not have any direct change in their headaches due to the infection. If you notice any changes with your headache pattern, please contact your primary care physician or your headache provider. Continue to take your headache medications for acute and preventive therapies. Anxiety about COVID-19 can exacerbate your headaches, so use relaxation techniques and continue to focus on healthy habits. If you do develop symptoms of COVID-19, you should contact your primary care provider and observe the CDC recommendations.

What should I do if I get a bad headache?
Follow the treatment guidelines of your acute therapy including your healthy habits such as hydration and contact your primary care physician or headache providers for further recommendations, if your home medication has not been effective. Going to the emergency department (ED) is an option, but that may increase your risk of exposure to COVID-19, and the EDs may be backed up. If the headache persists and you have been previously seen in the neurology clinic in the past year, you can call the neurology office during regular office hours. We may be able to arrange infusion treatment if beds are available that will help preventing you going to the ED and you will receive the same therapies as in the ED.

Is my child at increased risk due to their movement disorder?
Most patients with Tourette Syndrome, stereotypies and benign tremors are at no further risk from coronavirus compared to the general pediatric population. However, the anxiety surrounding coronavirus infection may lead to an increase in movement disorders symptoms. Please contact the neurology office if these symptoms are causing or exacerbating daily functional impairment.

Are there certain movement disorders that do have an increased risk?
Patients who have cerebral palsy, dystonia, chorea, ataxia and co-existing medical conditions (e.g., cardiac, pulmonary problems) should especially be monitored closely for breathing problems. Children with trouble breathing should be taken to your local ED.

My child is starting to have trouble breathing. I am worried he / she may have COVID-19. What should I do?
Shortness of breath is an emergency situation. You need to call 911 to get help. Please let the responder know that you are concerned about COVID-19 so appropriate precautions can be taken when the EMS comes to help.

My child is having fever and cough, but no shortness of breath. I am worried he / she may have COVID-19. What should I do?
Please contact your primary care provider for advice. If you do not have a primary care provider, contact your primary pulmonologist.

Should I keep my child from school, travel or flight?
Patients with neuromuscular diseases with compromised respiratory status at baseline or who are immune-compromised due to medical condition or treatment are considered “medically fragile.” Sickness could result in prolonged hospital stays and even life-threatening situations. Because of this, it is recommended that these patients avoid large gatherings, and during high-risk infectious illness outbreaks based on parent and / or school discretion, stay home with homebound / other alternative arrangement.

Will my adult child who comes to Cincinnati Children’s ED for evaluation be admitted if he / she needs?
We follow our hospital’s policy. For our adult patients who have been followed by our clinic primarily for comprehensive multidisciplinary care need, we recommend you come to Cincinnati Children’s ED for evaluation. If admission is determined necessary, the ED team will work with hospital administration leadership to decide on whether admission to Cincinnati Children’s or an outside adult hospital is deemed appropriate. This decision is made considering the availability of hospital beds during periods of high demand, since our younger patients cannot be admitted anywhere else if there is limited-bed situation.

I am concerned my child with a history of stroke may show evidence of COVID-19. What should I do?
If your child is on aspirin and has a fever, we encourage you to hold this medication for 72 hours and call our office for further advice. We otherwise recommend any medications for seizures, muscle stiffness, or behavioral health are continued without change. Please consult with your pediatrician to determine how to proceed with an evaluation for infection.

Does COVID-19 put my child at higher risk for stroke?
Emerging information on COVID-19 is especially important for children and families with history of stroke. First, there appears to be an increased rate of stroke in younger adults (30-50 years old) associated with the virus. The cause of this increase is not fully known. In some patients with the virus, blood is clotting more aggressively which can cause stroke and injury to other body parts. We are closely monitoring rates of stroke in children and teens. So far, we are not seeing increased rates of new stroke or recurrent stroke in children and teens. We strongly recommend families follow guidance from their local public health system to minimize risk for everyone.

Having tuberous sclerosis (TSC) does not increase the likelihood of contracting COVID-19 or of developing respiratory symptoms that are more severe than the general population. However, some TSC patients who fall into one of the following “at risk” groups (sometimes called ‘higher risk’ or ‘vulnerable’ groups) may need to take extra measures to avoid potential COVID-19 exposure:

• Those taking everolimus or sirolimus tablets or liquid (those treated topically don’t fall into this group)
• Those who have lymphangioleiomyomatosis (LAM) or reduced lung function
• Those with ongoing seizures or refractory epilepsy

The Tuberous Sclerosis Alliance Science and Medical Committee has provided additional guidance for those in these groups with regard to temporarily holding treatment with everolimus or sirolimus in those with LAM, renal angiomyolipoma, subependymal giant cell astrocytoma (SEGA), and refractory epilepsy. TSC and LAM experts at Cincinnati Children’s and the University of Cincinnati have been involved in this guidance for TSC-specific questions and concerns. The TSC Clinic at Cincinnati Children’s remains available to answer any questions or concerns you may that specifically pertain to you or your child’s situation.