Update as of November 2021, We now have COVID immunization for 5-12 year olds. This is a lower dose, because their immune system is so much better and quicker than those of teens and adults.
We strongly encourage all children with CdLS at those ages to receive the immunization. There is no increased risk for these compared to the general population. There are no additional side effects or results that are different than for the general population. This is a safe vaccine and protects the individual against COVID more than 95%.
We also encourage everyone 12 years and older to receive the vaccine as well. Again, there is no increased risk for the vaccine compared to the general population, no unusual risk factors and there should be no increase in side effects other than typical for the vaccine.
For those who received the vaccine previously, we also encourage everyone to receive the booster (same dose as the first two vaccines). In the future, this may be needed every 8-12 months, similar to the flu vaccine.
For anyone who is immunocompromised (very rare in CdLS), there is a recommended third shot (higher dose than the first two). This enables a better response in these individuals.
Remember – the more people who receive the vaccine, the quicker we will be rid of the pandemic.
Contact us with any specific questions by emailing info@CdLSusa.org.
Update as of August 2021, the U.S. Food and Drug Administration approved the first COVID-19 vaccine. The vaccine has been known as the Pfizer-BioNTech COVID-19 Vaccine, and will now be marketed as Comirnaty (koe-mir’-na-tee), for the prevention of COVID-19 disease in individuals 16 years of age and older. The vaccine also continues to be available under emergency use authorization (EUA), including for individuals 12 through 15 years of age and for the administration of a third dose in certain immunocompromised individuals.
The Pfizer-BioNTech COVID-19 vaccine and the Moderna vaccine that have been approved for an Emergency Use Authorization (EUA) by the Food and Drug Administration (FDA), were about 95% effective at reducing the risk of COVID-19 infection. These are mRNA vaccines, not live virus vaccines, so there is no danger of getting COVID-19 from them.
These ground-breaking vaccines have the potential to end this pandemic in the coming year. We will be recommending these vaccines to individuals with CdLS when they become available. Both vaccines are currently NOT approved for use in children (studies in children are currently underway).
The Pfizer-BioNTech vaccine is approved for use in 16 years of age and older.
There have been concerns raised about the new Pfizer COVID-19 vaccine and allergic reactions after two reactions occurred in healthcare workers in the UK. Until more information is available in agreement with the CDC we agree that all patients with history of anaphylaxis to other vaccines not get the Pfizer-BioNTech vaccine.
Individuals with common allergies to medications, foods, inhalants, insects and latex are no more likely than the general public to have an allergic reaction to the Pfizer-BioNTech COVID-19 vaccine.
The Moderna vaccine will be for use in 18 years of age and older. No allergic reactions have been reported with this vaccine.
There is no known problem with getting the vaccines with a history of any known medical issues (eg seizures, congenital heart disease, etc.). If you are concerned, please discuss with your child’s doctor.
If you have any questions or concerns, please contact Deirdre Summa at familysupport@CdLSusa.org.
Hi,
Are you aware of anyone with Cdls having problems or side effects with any of the Covid vaccines?
Our daughter is 33 and is moderately affected. She does not talk, has Esophagitis and chronic kidney disease.
I look forward to hearing from you.
Thank you!
What is the answer to Susan’s question above? We too have a CdLS kiddo. We want to know this answer as well.
We have a number of families reach out to share their child received the vaccine both Moderna and Pfitzer. Reported side effects are consistent with the general population of lethargic and possible flu like symptoms the first day and soreness in the injection area. We have also had a number of our adults who have received the second dose as well and have not reported any major negative side effects. Any additional questions regarding covid-19 and the vaccine please submit your questions through the Ask The Expert form on the website at http://www.cdlsusa.org/submit-question.
Same as above two questions, I have a son with cdls who is 32 years old and non verbal. He had severe swelling in his arm at injection site and extended up to his neck with his triple antigen injection as a baby, then had same reaction with his 12 month old measle mumps vaccination, his doctor has recommended Pfizer vaccination, but I am still torn as to whether to risk him having the vaccine or not, it’s like which evil is the lesser, I’d really like to know what is the best thing to do, thanks.
We have a number of families reach out to share their child received the vaccine both Moderna and Pfitzer. Reported side effects are consistent with the general population of lethargic and possible flu like symptoms the first day and soreness in the injection area. We have also had a number of our adults who have received the second dose as well and have not reported any major negative side effects. Any additional questions regarding covid-19 and the vaccine please submit your questions through the Ask The Expert form on the website at http://www.cdlsusa.org/submit-question.
Hi Debbie, I am a high functioning adult with Autism with a potential diagnosis of CLDS or other genetic condition. I personally would go with your gut instinct and chat with your GP (if you are based in the UK) and speak to them about your concern – I will be doing the same and hopefully get a medical exemption from the vaccine. I think taking a newly marketed vaccine is a very important decision to make as by taking the jab, there is no going back and with the complexity of genetic conditions, the risks are unknown.
All the best from the UK,
E