Minimum 8 Weeks for first OB Visit W/ Epilepsy & Autoimmune?

lhbird87 · April 2014

I hope someone can help give me insight, as I'm faced with a tough situation and am not sure what to do. I don't want to be doing something stupid.

So I made the first OB appointment with one of the only 2 OB's in town that my insurance covers, but if I have to go out of town that would be fine too.

I didn't explain my full situation, but the scheduler was pretty dismissive. She said even if it's a high-risk pregnancy they won't see me before 8 weeks and that first appointment is just going to be with a nurse. Is that normal?

So to give a bit more info, here is the situation... while I've always wanted kids and would be ecstatic to have one, I had a positive pregnancy test at the absolute worst time. I am in the middle of a long process of doctors appointments with a GP, a rheumatologist, and a neurologist. I MIGHT have rheumatoid arthritis or something that has similar signs, symptoms, & biomarkers, but I'm not diagnosed for sure. I also MIGHT have epilepsy, but the testing hasn't been conclusive yet. I thought DH & I were being careful although I haven't been able to find a BC pill I can tolerate, and honestly I don't know how this happened. So basically I feel very guilty that I failed at preventing pregnancy because the neurologist has stressed to me that it is very important I do not get pregnant at this time.

So I know the best advice is "ask your neurologist what to do" but when I call it's a message service and they haven't returned my calls.

Right now I'm on 1000 mg keppra (500 am and 500 pm, 12 hrs apart). That was my starter dose. I have no idea if they will leave me on it, take me off, change the dose, or anything. Also, I'm scheduled for an inpatient VEEG before I ever have the first OB appointment and I don't know if they will still do it. I can't ask, because as mentioned, they haven't returned my calls. Basically they were going to take me off the Keppra for the VEEG too so that they would be more likely to observe seizures.

I know those decisions will be made by the doctor when they know, when I'm able to tell them, but my main question is if I should look for another OB, or if it is normal to wait 8 weeks for your first appointment even in a situation like this. What should I do? I feel like a complete idiot, as I wasn't ready for this. I honestly didn't think I was able to get pregnant so I never prepared to have to deal with something like this. I feel like a terrible person. Thanks to anyone who can help.

Ylvelill · April 2014

I would call the other ob and explain the situation. Let them know that your main questions are surrounding medication. And I would call back your other doctors do you can get them on the same page as well.

ThereBeDragons · April 2014

Yes, it's very normal for the first visit to be delayed until 8-10 weeks even in high risk pregnancies. That's because 99.99% of the time there is absolutely nothing that the OB or nurse can do or say that would impact the progression of the pregnancy until around 12 weeks (which is a time to consider a very early cerclage if your pregnancy necessitates one. Which yours does not.)

You are not, however, a part of that majority. You are pretty much one of the only exceptions- and because an exception like yours is so very very rare- you need to be your own advocate for the health of you and your unborn child.

Inform the scheduling person that you have a serious medication interaction issue that cannot be delayed and that you need to speak with an OB as soon as possible so as to prevent a miscarriage or possible birth defects. You don't need a standard first appointment- that CAN wait until 8 weeks. You do, however, need to speak with a doctor immediately about your medication and have the OB contact your neurologist immediately to coordinate care during medical testing that is scheduled prior to the initial OB appointment.

Be firm, be confident, and be proactive.

lhbird87 · April 2014

Thanks. I have found I have to do that a lot for myself and obviously now it's much more important as it may not just be for me. Although after making the appointment I heard bad things about this OB and may want to try to find a better one anyway.

GoonieGal85 · April 2014

Sounds like the places you are calling/the secretaries, are being a**'s!

I would call other OB's and shop around. I am a high risk as I have Epilepsy (2000mg of Keppra 2x a day). Also a VP shunt and a liver disorder. I google searched the best high risk dr's in the state and looked up reviews to find the one I see. That was done months ago when I even started to think about pregnancy. I saw him for an initial "here are all my probs, what should I be worried about?" Basically he told me everything was ok, I would just be monitored much more closely.

As far as I know, they won't see you for 8 weeks. Even with a high risk condition. I found out I was pregnant at 4 weeks. I immediately called to set up the appt with the OB, but it had to be at 8 weeks (actually I think mine was 7.5 b/c my 8 week mark fell on a sunday).

I also called my Neurologist and Gastroenterologist to let them know. That's crazy that you can't get in touch with anyone at the Neuro Dr office. They don't have an emergency contact or anything? I was told by my Neuro Dr that I would get more frequent labs to check my levels. Which he had me do right away. All was good. It's safer to be on them, than to not be.

My Gastro Dr said I could come off my liver meds. But that more frequent labs would be done to monitor my levels throughout as well.

As far as an EEG, I would again ask the dr or at least the tech who will do it. It's not like an xray, and it's just "at the head" but I would definitely ask the Dr or tech!!!!

SLGILL1978 · April 2014

Hello! Congratulations! I am also a high risk. My OB knew beforehand when we were TTC and when I got scheduled I was actually 10 weeks (my pregnancy was confirmed when I was 8 weeks) when I did the intake with the nurse and I was 12 weeks when I actually saw my OB. Good Luck!!

lhbird87 · April 2014

Thanks to everyone for the input... it's always hard to get a hold of anyone in my neurologist's office on Friday, but today they called me right back and got me in ASAP which ended up being Thursday. I have no idea what they plan is yet but I'm so glad they took it seriously. I literally have 3 appointments this week (rheumatologist, GP, & neurologist)...

They are still going to do the chest x-ray and shield me properly. I feel comfortable with that choice because I have learned x-rays don't really expose you to much radiation unless you have a lot of them... and it's surely important to find out what I'm dealing with health-wise so it can be managed safely during pregnancy.

lhbird87 · April 2014

Thanks for the congratulations. There are a lot of mixed emotions with all the complications, but under it all we are very happy. When I told my husband I was like... ummm... we might not be adopting after all... lol

lhbird87 · April 2014

Ok so I thought I would go ahead and update here. I am so frustrated. I saw the neurologist who weighed benefits vs risk and decided to keep me on keppra and add 5 mg prescription folic acid. I trusted this decision as she explained it and it made total sense. I went to pick up my keppra refill and folic acid from the pharmacy and the pharmacist said that I shouldn't be on such a high dose of folic acid and refused to give me either prescription until he heard it from the doctor personally. As a pharmacist can he do that? He said "you guys are a train wreck when it comes to pregnancy" and by you guys I think he meant people with epilepsy as he told me "it's important for you guys to take these 12 hours apart" when I last picked up my AEDs. You guys? What is that?

I got in a bit earlier to the OB by finding one who took my concerns a bit more seriously but it's still not til April 29th. I can't get in any sooner because I will be in the hospital next week for inpatient eeg monitoring.

In terms of the rheumatologist they did all the tests but the office staff will not return my calls or tell me whether or not to keep taking my medicine. I'm at a loss with them as they truly don't care.

I am kind of overwhelmed by all of this. Obviously it's not an ideal situation, but should I be treated like a criminal?

GoonieGal85 · April 2014

Interesting. I was told by my Neurologist to up to 2mg folic acid 2x a day. There is also folic acid in my pre natal vitamins. Those vitamins also have b2, b12, and b6, and I as well also take extra doses of that.

My brother is a pharmacist, and I asked him immediately about all my med atuff when I found out I was pregnant. I trust him more than I do the Dr's. He said no worries about taking extra, your body will "flush out what it doesn't need and absorb". He did suggest taking it 12hrs apart b/c of the upset stomach it can cause.

Also, I don't think the pharmacist can keep meds from you. Nor was he being very nice. If anything, just double/triple up what you have, to make it equal the 5mg.

You know yourself better than any Dr or Pharmacist. Keep pushing to get what you want gal!

lhbird87 · April 2014

Thanks so much

They finally gave it to me, but it was the female pharmacist who is there in the morning and it was a lot more kind and tactful and even congratulated us... No calling me a "train wreck" like the other guy. She said they didn't have enough to fill it so they have me enough 1 mg tabs to take 5 a day for 5 days while they order more. She actually listened and seemed to understand why it was being prescribed to me. I think I will try to pick up my medicine in the morning from now on haha

Xath · April 2014

I'd be filing a complaint about that pharmacist with his management. That behavior was not only uncalled for, but he has no right to refuse you medication that you've been prescribed.