For Patients
Patient FAQs


We hope that you and your loved ones are healthy during these challenging times. Rest assured that the Roya Kabuki Program is fully operational and available to serve the needs of the Kabuki syndrome community. Feel free to reach out with any questions and/or concerns you may have. At this time, email to kabuki@childrens.harvard.edu is the most effective form of communication. Voicemail messages will be returned within 1-2 weekdays.​​

During this time the Roya Kabuki Program is able to schedule Telehealth visits for returning patients with Dr. Bodamer, and in most cases within a week. Telehealth visits will allow you to receive the same standard of care as in in-person visit, while remaining safely at home. If you are interested in setting up a Telehealth visit please let us know.

We understand families may have different and greater needs during this time. There are many organizations and resources that are currently, or working towards, meeting these needs. We have linked some on the right hand side of this page. If you need help identifying additional resources in your area please email our social worker, Julia Thomann, for support.

In addition, we have answered some common questions below. Our team is actively keeping up with any emerging literature that may be relevant to the Kabuki syndrome community and will update as needed.

With very best wishes,

The Roya Kabuki Team​​​​​​​​​​​​​

 

1. How do we explain and help our children cope with the current situation?

Many of us are experiencing confusion, fear, and anxieties related to changes drastic routine changes and new unknowns. AFIRM has compiled support strategy examples and resources that can be found here. AFIRM's coping resources are designed with children with Autism in mind, however these strategies can be great for any family with children.

2. Some children do not typically present with fever, or only low-grade fevers, despite infections and elevated WBC’s. How can we advocate for testing for COVID-19 if high fever is not present?

In the absence of fever, additional symptoms include dry cough (most common), shortness of breath, stuffy nose and diarrhea (less common). Exposure to someone who tested positive and/or has symptoms suggestive of COVID-19 infection are additional arguments to support testing.

3. When should we isolate a child with Kabuki syndrome?

“Social distancing” is recommended for everyone to limit potential exposure and to slow the spread of COVID-19 infections in our communities. Special attention should be given to children with Kabuki syndrome and immune deficiency (history of severe infections, low immunoglobulin levels) and/or history of severe respiratory illnesses (pneumonia, severe asthma), and/or severe cardiac defects and/or sleep apnea.

4. Does the “14 day window” apply to our kids?

The incubation time for COVID-19 is around 5 days. Observing the recommended 14 day quarantine window adds an important safety buffer.

5. Are there any common medications amongst Kabuki patients that could potentially have a similar effect as Ibuprofen on COVID-19 patients?

Currently there is no scientific evidence to support that Ibuprofen or other nonsteroidal anti-inflammatory drugs (NSAIDs) put patients who otherwise might have mild or asymptomatic COVID-19 infection at risk of more severe disease. People taking NSAIDs for other reasons should not stop doing so for fear of increasing their COVID-19 risk unless specifically recommended by their medical provider.

6. Should children with Kabuki who have asthma self-isolate for 3 weeks?

Please see question 1.

7. Have any children with Kabuki syndrome been diagnosed Covid-19?

To the best of our knowledge no children with Kabuki syndrome have been diagnosed with COVID-19 to date (03/27/2020).

COVID-19 Resources

Kid-Friendly COVID-19 Resources

Food Resources

Financial Resources

Utility Companies

Childcare & Transportation

Social & Emotional Support

  • Parental Stress Line:
    Call: 1-800-632-8188 (Free & Confidential 24/7)
  • National Alliance on Mental Health
    Call: 1-800-950 6264 or if in crisis, may text "NAMI" to 741741
  • National Suicide Prevention Lifeline:
    Call: 1-800-273-8255
    Spanish Language: 1-866-628-9454
    Deaf & Hard of Hearing: 1-800-799-4889
    Veterans: 1-800-273-8255
    Disaster Distress: 1-800-985-5990
  • Safelink (Domestic Violence)
    Call: 1-877-785-2020
  • Substance Abuse and Mental Health Services Administration’s (SAMHSA’s) Disaster Distress Helpline
    Call: 1-800-985-5990
    Text: TalkWithUs to 66746
    TTY: 1-800-846-8517