My 8-year-old son was presumably diagnosed with ‘fatty oxidation disorder’. According to a pediatric geneticist here in Germany, it is possible that he has a rare metabolic disease that is manifested as ‘rhabdomyolysis’ in which CK level rises with events such as febrile illnesses or infection. The background for making this diagnosis is that he has had ‘rhabdomyolysis’ after a high fever on two occasions in the past. He experienced an increase in CK level up to 3,415 U/L after being infected with an unknown febrile virus, and this affected his leg muscles and made him unable to walk properly. His CK level returned to the normal range within 20 days (3,415 U/L > 1,519 U/L > 118U/L > 88 U/L) while monitoring at the hospital without any specific treatment except glucose infusion and IV treatment. Since we were told that these two events were uncommon under normal circumstances, my child’s pediatrician recommended genetic testing for myopathy and metabolic disorders. As a result, all the values were within the normal range on the genetic screening test that he took when he was in a normal state, that is, when he was not ill or was not infected with the febrile virus. That is the reason a pediatric geneticist assumed that it could be a fatty acid metabolism disease that only appeared when he was infected with a virus. For an accurate diagnosis, we were told that my son should be tested for metabolic disease immediately at the time he experiences such an event again in the future.
Other than this, his physical condition is good (he is physically taller than his peers) although he often gets tired after simple exercise because of his weak strength and lack of motor skills. He also had two episodes of ‘transient hip synovitis’ apart from ‘rhabdomyolysis’ mentioned above. He has had no side effects when he has been vaccinated against pneumococcal, flu or other vaccines that are compulsory from birth. He just has a peanut and nut allergy, and is currently taking Abilify (2mg) for his tic disorder and ADHD.
Based on the information listed above, I would like to ask your opinion as to whether there is no risk of my child getting a COVID-19 vaccine in the future, from an expert standpoint and from the data accumulated while receiving the vaccines in the children over the age of 12 and adults with diseases similar to my son. Of course, I am aware that any vaccine may have some side effects. However, I would like to prepare my mind by knowing whether the side effect could be a life-threatening, or whether my son is at a higher risk of developing myocarditis, which recently occurs among younger men, as he has already experienced the elevated CK levels in the past. I am sure any advice from you will be of great strength and help to us.
Thank you for taking your precious time to read my long email. I look forward to hearing from you soon.
Thank you & Best regards,
Dear Mrs Feliz,
Thank you very much for your question concerning the risk of rhabdomyolysis or myocarditis after Covid vaccination in your son with a presumed fatty acid oxidation defect.
Of course, we don’t have any profound data yet to scientifically answer this question, but metabolic experts would certainly recommend the vaccination as the risk of a febrile
Covid infection probably outweighs the risk of the vaccination. The European Reference Network for Hereditary Metabolic Disorders (MetabERN) has published recommendations
concerning the vaccination of patients with metabolic diseases.
This is the link to the website: https://metab.ern-net.eu/covid-19/
“The experts of MetabERN recommend that IMD patients get vaccinated against COVID-19 when they are offered this opportunity.
All IMDs should be considered as a high priority for COVID-19 vaccination. Patients who present a high risk of acute metabolic decompensation,
respiratory or cardiac complications, and frequent exacerbation induced by infection, such as those with AOA, PM-MD, C-FAO and LSD,
should be vaccinated with the highest priority. Based on the current evidence, our experts’ advice is to use any vaccine available in the country,
with no particular contraindications for any metabolic disease.”
According this recommendation, we would certainly recommend the vaccination for your son.
Best regards, PD Dr. Sarah Grünert
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