My child has Smith-Magenis syndrome What can we do and what should we know during this home lockdown
Center of Reference for Rare diseases – Intellectual Deficit of Rare Causes
Dr. L. Perrin (pediatric geneticist specialized in SMS), Dr. A. Maruani (child psychiatrist), E. Chalain (neuropsychologist), Dr. D. Germanaud (pediatric neurologist); Research Center of Excellence for Autism and Disorders of the Neurodevelopment, Robert Debré Hospital, Paris.
ARE THEY MORE AT RISK OF DEVELOPING A MORE SEVERE FORM OF COVID-19 ?
Some children with SMS (not all of them), are more susceptible to develop pulmonary infections or asthma. This makes them more fragile. It is also the same case for children with heart disease. It is always a good thing to check with the child’s personal cardiologist or pulmonologist to get a more specific answer. Practicing good hygiene is instrumental in the wellbeing of these children.
Do not worry however, to this date, there has been no cases reported of SMS children with a severe form of Covid-19 in the world. You need to respect as much as you can the home lockdown measures. It is often difficult to wash the child’s hands, have him wear gloves when you go outside.
HOW CAN WE PROCEED WITH OUR FOLLOW-UP APPOINTMENTS ?
You should be able to do video-conferencing to avoid pushing back too far your appointments. If it is not possible, only reschedule the unnecessary ones. Your pharmacist is now allowed to extend your child’s prescription; otherwise, your doctor will renew them remotely.
To continue physical therapy or other personal care, if you are not sure of their necessity, you should contact your doctor. Speech therapists can continue their sessions using online communication or phone calls. It is more complicated for psychomotor therapy, but some information is available for you on the website Debrechildpsychiatry.org, along with some practical sheets written by psychomotor specialists from the excellence center.
HOW CAN I HELP MY CHILD ADJUST TO THE NEW HOME LOCKDOWN SITUATION?
Simply explain to your child the reasons for the home lockdown using words he is used to hearing. Patients with SMS have more difficulties adjusting to changes in routines. Understanding the changes we made and their consequences will help the children to transition better into new habits.
Grandparents are usually very involved in the upbringing of the children to support the parents throughout the year. You then have to explain to your child why he cannot visit them anymore. A guideline is available online: “Neurodevelopmental disorders with comprehension difficulties: some advices during Covid-19 epidemic” (not yet translated). You might also refer to the practical sheet for autistic spectrum disorder (even though your child is not autistic) (not yet translated), it is full of resources to help taking care of your child and organize a daily routine and implement appropriate activities.
HOW TO DEAL WITH INCREASING FREQUENCY OF ANGER OUTBURSTS ?
Children with SMS disorder are likely to show more behavioral problems than usual. Living together in small spaces might be challenging for them, increasing the amount of outbursts and their hetero-aggressive behavior. It is highly important to maintain the same educational structure and to increase activities they already favor (drawings, board games, school work). We don’t advise to increase their screen time but rather to privilege one-to-one activities, because they need their special attention.
In case of adjuvant therapy, it is important to strictly follow the regular times of the prescription. For more information see the online guidelines ‘How to deal with oppositional and rage behavior during home lockdown’.
HOW TO DEAL WITH SLEEP DISORDERS ?
Sleep disorders might increase during home lockdown. It is highly recommended to follow a strict daily routine, with regular times for meals and bedtime. You want to avoid changing their sleep cycles. Try to accentuate the difference between daytime and night time. Use natural light provided by the access to the windows to help your child recognize it is daytime. We understand that screen times will slightly increase during home lockdown. Nevertheless, we recommend avoiding the use of tablets, phones or computers during the hour that precedes bedtime. You could replace them with other activities, such as reading books or listening to music.
You can refer to our website guidelines regarding sleep disorders, it contains a lot of recommendations to help you caring for your child.
If the sleeping situation does not get any better or worsen despite observing our recommendations, call your doctor or referral to discuss a better solution.
Do not auto-medicate your child.