relative with autoimmune disease - kind of long, sorry!

uksteph11

Hello everyone!  I haven't introduced myself yet, but have lurked for a while and commented on a couple of posts.  My husband and I are expecting a baby boy in late October after years of infertility.  That being said, I have worried a lot throughout this pregnancy and may be over thinking a few things about once he arrives.  My question is about a relative with an autoimmune disease visiting him as a newborn.  My SIL has an autoimmune disease that requires her to take daily injections.  She has never really discussed what she has been diagnosed with, but is frequently in the hospital due to complications.  For example, about 2 months ago, she got a cold which developed into pneumonia resulting in a 3 week ICU stay.  She also has hepatitis, but again, she is not upfront about the type.  While I am aware that she can not pass on an autoimmune disease to an infant through contact, I am worried that her compromised immune system is a carrier for illnesses that could be dangerous for the baby.  She frequently shows up at my MIL's house on Sundays saying she is tired but not sick, but then ends up hospitalized the next day.  I will definitely be discussing this with my OB at my next visit, but was just curious if anyone else has been in a similar position.  Am I being a crazy control freak or should I limit contact until the baby is a bit older?  Thanks!

mari1014

I think as a mother you should do whatever you feel is best for the safety of your baby

Emerald27

I think it is more than reasonable to ask that all visitors (not just SIL) wash their hands before holding baby, and it's also reasonable to ask that anyone who is sick wait to visit until they're well.

That's about it, though. This is her nephew to love too.

I have an autoimmune disease. It doesn't affect my immune system like hers (I have a strong immune system but prior to the removal of my thyroid, my body attacked it with all its might), but I would hope that out of love for her nephew, SIL might be extra mindful of how she is feeling when she thinks about visiting.

bananaelizabeth

I think if you have an autoimmune disease, your body can't tell the difference between good and bad cells, so it fights off them all and causes reactions. There is nothing that can be passed on differently than anyone else with a cold or sickness. Their body just reacts differently.

golfingdarwinfish

In layman's terms...

She's probably on an immunosuppressant that attempts to "push down" her immune system since it is triggered by "self" cells. I work with immunosuppressants on a daily basis, and I'm curious which she is on if she has hepatitis (is it active?) as most are contraindicated during periods of active disease. I'm also curious which immunosuppressant she is taking daily via injection if she's finding herself in the hospital because her immune system is so suppressed that even a cold lands her there. If your report is accurate that calls into question her treatment, but that's beside the point.

If you plan to discuss this with your OB I would advise first finding out which autoimmune disease she has, in addition to the type of hep.  

Also, she can't "pass on" the autoimmune disease to your little one period.

I'm trying to remember which immunosuppressant is administered via SC injection daily....  I really don't want to look it up but now I'm intrigued.  Most are weekly, EOW, 2x/week.... 

ETA: If you're in the UK I'm assuming it's Kineret?

megaroo64

My SIL also had an autoimmune disease and is very often in the hospital for various complications. Basically, she follows the same health guidelines that everyone else does- wash your hands and stay away if you are sick.

I know with my SIL, she suffers from pretty chronic fatigue- so she often seems sick and ends up in the hospital just from extreme fatigue. Ending up in the hospital when you have an autoimmune disorder does not ALWAYS mean they are sick in a way that could be dangerous to your LO. In my particular case, I know my SIL's diagnosis- she has been completely upfront about her health situation and I completely trust that she would not do anything to put my little guy at risk. Are you close with her in a way that you could talk to her about your concerns?

Unknown

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uksteph11

golfingdarwinfish said:

In layman's terms...

She's probably on an immunosuppressant that attempts to "push down" her immune system since it is triggered by "self" cells. I work with immunosuppressants on a daily basis, and I'm curious which she is on if she has hepatitis (is it active?) as most are contraindicated during periods of active disease. I'm also curious which immunosuppressant she is taking daily via injection if she's finding herself in the hospital because her immune system is so suppressed that even a cold lands her there. 

If you plan to discuss this with your OB I would advise first finding out which autoimmune disease she has, in addition to the type of hep.  

Also, she can't "pass on" the autoimmune disease to your little one period.

I am a physical therapist so I have some medical knowledge, but I just know the basics when it comes to many things.  I am aware that she can't "pass on" the autoimmune disease to the baby and even said that in my OP.  My concern has nothing to do with her passing it on to the baby or anyone else.  Please correct me if I am wrong, but wouldn't she be more susceptible to infections, both viral and bacterial, with a compromised immunes system?  My concern was that if her immune system is unable to fight off infection, would she be more likely to be carrying something without symptoms?  I don't think she is taking immunosuppressants, I believe she is taking Ig injections.  Do you work with patients taking antibodies daily?  She does have active hepatitis, but I know very little about it.  She is very private about her health conditions so I have never asked her any questions.  I appreciate your opinion since you have experience in this area. 

uksteph11

megaroo64 said:

My SIL also had an autoimmune disease and is very often in the hospital for various complications. Basically, she follows the same health guidelines that everyone else does- wash your hands and stay away if you are sick. I know with my SIL, she suffers from pretty chronic fatigue- so she often seems sick and ends up in the hospital just from extreme fatigue. Ending up in the hospital when you have an autoimmune disorder does not ALWAYS mean they are sick in a way that could be dangerous to your LO. In my particular case, I know my SIL's diagnosis- she has been completely upfront about her health situation and I completely trust that she would not do anything to put my little guy at risk. Are you close with her in a way that you could talk to her about your concerns?

We are not close, but if there is a possibility that it could be dangerous to the baby, I feel completely comfortable talking to her about it.  She would never intentionally what to harm the baby or anyone else.  You are right that the best way to handle the situation would be to talk with her. 

Lapooh

If her immune system is not capable of fighting infections, she is going to be symptomatic earlier / more often from infections than normal people. She is hence less likely to be harboring latent infections than other people.

So same rules apply as with anyone else. If she is feeling sick, she should stay away.

On the other hand, if you don't know what medication she is taking, it might be worth clarifying with her if there are any precautions she should take around a newborn due to the specific medication she is on.

Aarg

My dad suffers from an autoimmune disease. And you can't catch autoimmune disease. BUT he was on a medication for a while where we all had to wear gloves and masks if we came in a 10 ft radius of him because it was a chemo drug. So I would make sure the meds she takes cannot be transferred s skin to skin

Emerald27

@crawford411‌ Makes a great point about approach. Even if your primary concern is LO's health, framing the conversation with SIL's needs as the focus will get you the info you need to ask your OB about but in a way that's very considerate of SIL's needs.

LightBright515

Sounds like Lupus. She might be on steroid injections

But it sounds like LO may be more of a concern to her than the other way around. In any case, you're the mom and it's not unreasonable to ask others to be mindful when coming to visit.

golfingdarwinfish

uksteph11 said:

golfingdarwinfish said:

In layman's terms...

She's probably on an immunosuppressant that attempts to "push down" her immune system since it is triggered by "self" cells. I work with immunosuppressants on a daily basis, and I'm curious which she is on if she has hepatitis (is it active?) as most are contraindicated during periods of active disease. I'm also curious which immunosuppressant she is taking daily via injection if she's finding herself in the hospital because her immune system is so suppressed that even a cold lands her there. 

If you plan to discuss this with your OB I would advise first finding out which autoimmune disease she has, in addition to the type of hep.  

Also, she can't "pass on" the autoimmune disease to your little one period.

I am a physical therapist so I have some medical knowledge, but I just know the basics when it comes to many things.  I am aware that she can't "pass on" the autoimmune disease to the baby and even said that in my OP.  My concern has nothing to do with her passing it on to the baby or anyone else.  Please correct me if I am wrong, but wouldn't she be more susceptible to infections, both viral and bacterial, with a compromised immunes system?  My concern was that if her immune system is unable to fight off infection, would she be more likely to be carrying something without symptoms?  I don't think she is taking immunosuppressants, I believe she is taking Ig injections.  Do you work with patients taking antibodies daily?  She does have active hepatitis, but I know very little about it.  She is very private about her health conditions so I have never asked her any questions.  I appreciate your opinion since you have experience in this area. 

@uksteph11

She's on immunoglobulin therapy? Ig therapy isn't incredibly common in the US unless the immune system itself is deficient (i.e. primary immunodeficiency), rather than hyperactive.  It's usually done on weekly schedule if SC, but can be EOD if necessary

If she's carrying something, she's actually more likely to be symptomatic than you or your DH carrying the same bacteria/virus.  But, that also depends on her ailment.  Ig she actually has a deficient immune system that would come naturally, if she has an autoimmune disorder it could be the medication that leaves her more susceptible to illness.  Some of the TNFa inhibitors have data on infection and hospitalization, and it's not nearly what you would expect it to be, though they don't suppress as severely as, let's say, cyclosporine, so it really depends on what she is taking and her underlying condition. 

If she will be around LO make sure she has a Tdap. 

Justabean3

It sounds to me like she has Autoimmune Hepatitis which is controlled by steroid shots also. It isn't contagious and can occur at any age. It usually goes hand in hand with other autoimmune disease.

I would just ask her flat out. She knows you are pregnant.

BeanNut

Another vote for asking her.  Also, there is nothing wrong with being cautious especially the first 4-6 weeks you don't want your baby to catch a bug!

uksteph11

Thanks to everyone for the replies.  I appreciate what each of you had to share and it makes me feel more comfortable to talk to my SIL.  I saw my OB today and she recommended that we do not allow direct contact until LO 2 month appointment with his pediatrician.  She did say that this was a very cautious approach and that a pediatrician may not recommend this.  My husband and I agree that cautious is the way we want to go and are going to have an open conversation with our SIL. Hopefully she will agree that this is best for both her and the baby.  Thanks again for all of your advice!