This is a bit of a long story, so I apologize in advance. I am scheduled for a perinatology consult this coming Tuesday. The reason for the consultation is that I have Stiff Person Syndrome. There are absolutely no case studies of patients in my situation while pregnant. The only two case studies that exist were for women that developed SPS as a co-morbidity of breast cancer, and both were discovered during pregnancy. I have asked two OB's, my Neurologist, my Neuro's CNP, and even my chiropractor. The only issue that they see is discomfort on my part. I am sure that the appointment is more CYA than anything.
SPS is RARE. The diagnosis is literally one in a million. My neurologist is on the board for the hospital system and the head neurologist, and he has one or two other patients in Northern CA. Generally speaking, the disease shows up in your 40's, and most patients have GAD antibodies that can cause diabetes. I'm a bit of an oddball because I developed symptoms very young, and I do not have GAD antibodies. I am terrified, though, that they'll decide that I am high risk, when in reality, I am not. The perinatologist admits patients to Mercy San Juan, and I REALLY do not want to deliver there. The hospital is close, but it is old, postpartum rooms are shared, c-section rates are high, and it isn't as baby/mother friendly as the hospital I chose. The perinatology practice that my OB works with is not the only one in town. They are simply the largest. There is a practice across the street from my OB, and that is in the same complex as Sutter Roseville.
I'd prefer to deliver at Sutter Roseville, since the hospital is new, set a in the middle of huge old-growth oak grove, rooms are not shared, and babies do not have to leave the room for new baby exams or baths. I am also more likely to get my VBAC at that hospital. If needed, the hospital has individual, private rooms in their level III NICU. They are the only hospital in Northern CA to have that available. I also have an issue with driving downtown to see the perinatologist for frequent appointments if they deem me high risk. They won't allow children, and I home-school. That means I have to get a sitter a half hour from here in one direction, then drive downtown, get DD, and come back out here. Later on in the pregnancy, that's going to be really difficult to do.
My other issue is that I would like a serious go at a VBAC without induction or pain medication. I planned a natural birth with DD, and it just didn't happen. The case studies recommend automatic scheduling of c-sections. However, I do not have the issue of being treated for cancer at the same time, and the studies are fairly old. I understand that I may need a c-section if my muscles become too rigid near my due date, but I would rather take that as it comes if needed.
I would love to hear from any moms that have dealt with having to see a perinatologist, and will take any advice on how to advocate for my choices.
SPS is RARE. The diagnosis is literally one in a million. My neurologist is on the board for the hospital system and the head neurologist, and he has one or two other patients in Northern CA. Generally speaking, the disease shows up in your 40's, and most patients have GAD antibodies that can cause diabetes. I'm a bit of an oddball because I developed symptoms very young, and I do not have GAD antibodies. I am terrified, though, that they'll decide that I am high risk, when in reality, I am not. The perinatologist admits patients to Mercy San Juan, and I REALLY do not want to deliver there. The hospital is close, but it is old, postpartum rooms are shared, c-section rates are high, and it isn't as baby/mother friendly as the hospital I chose. The perinatology practice that my OB works with is not the only one in town. They are simply the largest. There is a practice across the street from my OB, and that is in the same complex as Sutter Roseville.
I'd prefer to deliver at Sutter Roseville, since the hospital is new, set a in the middle of huge old-growth oak grove, rooms are not shared, and babies do not have to leave the room for new baby exams or baths. I am also more likely to get my VBAC at that hospital. If needed, the hospital has individual, private rooms in their level III NICU. They are the only hospital in Northern CA to have that available. I also have an issue with driving downtown to see the perinatologist for frequent appointments if they deem me high risk. They won't allow children, and I home-school. That means I have to get a sitter a half hour from here in one direction, then drive downtown, get DD, and come back out here. Later on in the pregnancy, that's going to be really difficult to do.
My other issue is that I would like a serious go at a VBAC without induction or pain medication. I planned a natural birth with DD, and it just didn't happen. The case studies recommend automatic scheduling of c-sections. However, I do not have the issue of being treated for cancer at the same time, and the studies are fairly old. I understand that I may need a c-section if my muscles become too rigid near my due date, but I would rather take that as it comes if needed.
I would love to hear from any moms that have dealt with having to see a perinatologist, and will take any advice on how to advocate for my choices.
My OB should get the report tomorrow, and then I can call my neuro to see if we can schedule IVIG for next week.
