We are struggling with trying to decide whether or not to vaccinate our 16-year-old son who was diagnosed with SCLS at 4. His last attack was nine years ago. While we've read studies and anecdotal evidence that kids seem to, "grow out of," SCLS, we're still leary of having him get the vaccine. On top of that, his experience in the hospital when he was diagnosed, has made him phobic about needles.  I'm seeing different results from the adults on the board about the effects, so any thoughts and guidance is appreciated.

Hi. I'm a parent of a 17 year old girl who started having sclS attacks when she was 8 she had one serious, life threatening attack and several other less severe attacks, four hospitalizations. She was finally diagnosed when she was 11 years  old. She started IVIG  and has not had a attack since. Now for the Covid vaccine we are not sure what to do about that. Does the risk of getting the vaccine outweigh the risk of getting Covid for a young person??
so far we have decided against the vaccine. Her school has a mandatory vaccine policy, she got a medical exemption at least for the first semester. She also developed a severe needle phobia when she was sick which also makes it difficult for her to go for the shot
 

CmanDad,

Covid-19 poses a grave and even mortal danger to SCLS patients, whether diagnosed ahead of infection or diagnosed posthumously -- especially for those who are NOT receiving a full dose of IVIG on a regular basis.  For background information, check out for example https://rareshare.org/topics/2100, https://rareshare.org/topics/2113, https://rareshare.org/topics/2118, https://rareshare.org/topics/2091, and https://rareshare.org/topics/2151.

I gather that your son does not receive IVIG on a regular basis, so he is especially vulnerable, particularly since the Delta strain is -- and likely future strains are going to be -- more contagious and life-threatening to him.  And if he were to get the Covid vaccine, he would be well advised to receive a full-dose infusion of IVIG just before getting vaccinated, each time.

I have two suggestions. First, have an informed and frank conversation with him about the whole issue.  He may be only 16 years old, but if I were his father, I would give him the benefit of the doubt and treat him like a young adult.  I would tell him about the risks of NOT getting vaccinated and ask him what he is willing to do and tolerate in order to minimize his chances of dying from a Covid-induced episode of SCLS before making it to his 18th birthday.  In particular, is he willing to protect himself by getting a two-day, full dose of IVIG, which entails an intravenous infusion (that’s one or two needle sticks), before getting the Covid-19 vaccine (that's one or two more needle sticks, depending on the particular vaccine)?

Second, I suggest that you ask your son’s main physician to get in touch with Dr. Kirk Druey at NIH to discuss the pros and cons of Covid vaccination AND of getting a full dose of IVIG before each shot.  (His contact information is email kdruey@nih.gov, see https://www.niaid.nih.gov/research/kirk-m-druey-md-0)  And then I would take your son to have an adult-type of conversation also with that duly informed physician, before having a second, adult-level family discussion about what to do.

Jasperdina,

Please see my response to CmanDad, right above.

Hi CmanDad and Jasperdina, how have you decided to get covid vacxin for your son and daughter? How are they going on? Do your children get IVIG monthly by now?

Dear Aporzeca, I contacted our son's physician, and sent him all related reports recently, he has read it and also agreed that getting IVIG as recommended is neccesary to keep safe from the adverse side of covid vacxin. However, he also added that, given the IVIG used was got from people who used to get covid but already recovered, or who has injected with covid vacxin, then the vacxin's effectiveness, if I let my son injected after that, will be reduced or of no effect.

I do not know how to verify this, and if there is a posibility of that, then we are thinking that IVIG (from covid related persons) is enough for my son to immune from covid? If so, we may consider to get him get necessary IVIG once or twice a year (like vacxin). 

Does it make sense? We are really wondering about this. As almost pupils in his school has just been vacxinated. and he has been off from IVIG since Sep.2018 due to our financial difficulty to follow it so far.

Thank you all and hope to hear your opinions!

We have decided not to get the Covid shot (for now) for our daughter her doctor thinks she should be ok should she get Covid since she is young and otherwise in good health. 
we are worried after reading reports about people getting a scls attack after the Covid vaccine, it has been a tough decision trying to figure out what would be best for her. 
she does get monthly IVIG which here in Canada is covered through our healthcare system. I asked her doctor about possible antibodies in the IVIG he thought there might be some but probably not enough to protect her from Covid. 
 

Hello, I am convinced that the protection provided by vaccination against COVID and its variants is very useful for everyone. In the particular case of SCLS patients, the risk of complications from COVID is greater than for other categories of the population. Therefore, the vaccine is clearly indicated for SCLS patients. The Astra-Zeneka vaccine appears to have more side effects than the messenger RNA vaccines. For this reason, the Pfizer vaccine and the Moderna vaccine are preferable. To minimize the very low risk of complications from the vaccine, it is recommended that it be injected a few days after the monthly IVIG infusion. I have received 2 doses of Pfizer, without any complications and I will have the 3rd dose on 01.12.2021. Claude Pfefferlé

Thanks Jasperdina and Claude for your information. As long as it is not yet compulsory, we will take the time for the decision. As there have been 2 pupils (age 14 and 16)  in our place just passing away due to vacxin shot. It is really unpredictable anyway.