Autoimmune disease and thrombocytopenia

Hello @marymanning and welcome to Mayo Clinic Connect. I am sorry to hear of your daughters diagnosis coming up during her pregnancy. You said that she is being treated with weekly IV treatments. What is in the IV?

Were her initial symptoms nose bleeds? I read where this disorder can happen if there is a family history. Are there others in your family who have had this as well?

We don't have a history of this in the family; however, her 10 year old son was born with it and had to have two transfusions immediately after birth. She did not have a nose bleed. She did have a rash on her body and her doctors had tests done and determined this is what she has. I do not know exactly was is in the IV treatment -- I do know that she has been on steroids for the last couple of weeks. They are doing an EKG now because her blood pressure has come down some but her heart rate is too high and she is continuing to vomit.

@marymanning
It does sound as if her doctors are active in doing what they can in her situation. Has she been referred to a hematologist at this point?

You mentioned that her medical team is going to induce labor at 37 weeks which means that she only has a few weeks more to carry her son. Are there plans to refer her to a blood specialist after she delivers?

You and your daughter (and her son) will certainly be in my thoughts (and prayers) during the next few weeks. Will you keep in touch and update Connect regarding her condition as time goes by?

My daughter has been diagnosed with thrombocytopenia and is in her 34th week of pregnancy. She is receiving weekly IV treatments, but last night developed high blood pressure, was extremely hot, and ended up at the ER. They released her at 4:00 this morning. None of the OB/GYN doctors caring for her have ever cared for a patient with this, so can you tell me how much of a concern this new condition is? They plan to induce labor on the 28th when her son is at 37 weeks. Thank you.

Good morning. I can only imagine how worried you are for your daughter. I’m glad to hear that she has some good doctors. I found this NIH article that talks about thrombocytopenia and pregnancy. I hope it will give some helpful information.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5394486/
Becky

@marymanning
It does sound as if her doctors are active in doing what they can in her situation. Has she been referred to a hematologist at this point?

You mentioned that her medical team is going to induce labor at 37 weeks which means that she only has a few weeks more to carry her son. Are there plans to refer her to a blood specialist after she delivers?

You and your daughter (and her son) will certainly be in my thoughts (and prayers) during the next few weeks. Will you keep in touch and update Connect regarding her condition as time goes by?

She has been seeing a hematologist for the last two months. She was back at the ER late yesterday afternoon. Ran more tests and they believe what she is experiencing is a result of the IV treatments. Her OB/GYM doctor talked with her this morning before they discharged her and said it looks like they will go ahead and induce her on Monday. She said before they left, the monitored her son's heartbeat and said he is doing okay. What a roller coaster ride this has become. Thank you for your prayers.

@marymanning,

Your daughter and grandson are certainly keeping the doctors busy, aren't they? If the IV treatments included steroids that could certainly make her feel ill.

I'm glad to hear that your grandson's heartbeat is good! He must be a strong little boy.

I will be thinking of you all on Monday. Will you post when you are able?

Yes, I will repost for tomorrow. Thank you for your kind words. She still has not spoken with any of her doctors since they sent her to the hospital for an EKG on Friday. She is so upset by their lack of concern. She needs their reassurance that this is going to be okay -- that Oliver will come through this okay -- and yet it seems like none of them want to take on that responsibility.

@marymanning Of course you and your daughter are concerned. It’s a frightening situation and your daughter needs to have full confidence in the doctors. As a nurse on an oncology unit, we ran into this type of problem occasionally. There are several things that she can try.
1. She can explain how she feels to one of her nurses that she really likes and trusts and just pull them in to understand what she’s feeling and then hope that they will pass this on to the doctor a good nurse usually does.
2. You could help her make some posters of her questions just make them big enough to be seen and post them on the door to the hallway or over her bed just somewhere that they can be seen and just list what she’s feeling and she wants some answers.
3. You could also find out if there is a patient representative in the hospital. A patient representative is a go between the patient and the doctor. Her or his job is to side with the patient. They are very nice people and they’re able to talk to the doctors and explain how the patient feels so this is also good.
Will any of this help?