Epilepsy and pregnancy

[stockiingmelissa]

So I took a at home pregnancy test this morning and it was positive. I have an IUD in so I am hoping that it is wrong but...........If I am pregnant can anyone tell me if there is going to a problem with it? I am nervous not only because of the IUD but because of the possible problem with the seizures as well.
Next I called my "neurologist" on Friday to ask him about changing the appointmnt for the EEG that he scheduled and his "nurse" told me that they couldn't arrange everything around my life that I had to accept what they did for me. OK the reason why I was changing my appointment is because of the jaw injury that I have I have to go see my DDS again.
The DDS has to get me in to see a surgeon because my jaw is so unstable that I keep damaging it. For example I haven't been able to talk since this morning because my jaw is locked so tight that I can't even seperate my teeth. Now I don't know what the jerk is thinking but I am definitely not going to put off seeing the DDS so I can have yet another EEG. I explained to him that I had problems with my jaw and he just didn't seem to understand it. He had his nurse tell me, yet again, that seems my injury occured last June that there is no way that any of this could be directly related to the accident. But I told him that I have had abscon seizures since then and that my jaw injury has been there since then.
I don't know what I am going to do. The DDS says I am going to have to have surgery. The neurologist is telling me that I basically don't know what I am talking about.
Another thing and the last I promise. The neurologist informs me that he has been a neurologist for 30 years and has know about neurology a lot longer than that. Now I am glad that he is a know it all that doesn't seemt o know anything. :mrt:

 

[valeriedl]

I can't really give you any advice about the pregnancy question but I can tell you about your neuro.

Every other visit I would see his physicians assistant and she was a know it all too. It got to the point with her that I told my neuro and the office that I didn't want to ever see her again and every appointment was to be with the neuro. They had no problem with that.

His office doesn't seem to have problems with scheduling things around my life. I can't drive so I have to rely on someone else to take me and I can usually have tests done when someone can get me there.

Is there maybe another neuro that you could switch too? You would probably have to wait to have the tests done till you could see him and schedule them for you, so it might be a loose-loose situation. It might be worth a try though.

 

[Endless]

Melissa,

Oh my, you have so much going on right now. So hard. I'm really sorry.

It seems like the first order of business is to get in to your Primary Care Physician ASAP and get a pregnancy test. And if it is positive, have your PCP review all your meds to see if they are safe for the baby, to at least buy you some time to decide what you want to do. I guess after that there are lots of options and decisions to make. I'm hoping there is a good outcome for you.

What kind of anti-seizure meds are you on? If not baby-safe, your neuro may need to adjust them.

Second, what's your neuro doing diagnoising your jaw? That's crazy. It would actually be an Orthognactic Surgeon (ear-nose-throat doc) that would diagnose and operate on your jaw.

If your neuro really did/said that, maybe you would benefit from a new neuro who doesn't actively oppose you getting the right medical treatment? I've fired two neurologists before I found the one I have now. It's so important to find one that is not only knowledgable but also treats you with respect.

Will you let us know how things come out?

 

[stockiingmelissa]

Endless - I will definitely let you know the outcome. I guess I should have better explained myself. It was my DDS who specializes in TMD and TMJ that diagnosed my jaw problem. The neurologist did not diagnose it he just thinks that I am making the wrong decision by going to see the DDS instead of having the EEG. I agree I need a new neurologist.
Valeriedl - Thanks for the input. I don't have a problem having the baby I am just nervous about having a seizure and having something happen (i.e. falling on my belly) during the seizure and baing later in term.
I will definitely keep the baby if I am pregnant. I take Tegretol 200 mg twice a day.

 

[Endless]

Melissa,

I am so happy to hear that. The baby, I mean.

I understand your concerns about falling on the baby. There are lots of mom with seizures in here. I think they'll weigh in on the subject. I wouldn't worry, though. Babies are pretty resilient. The meds worry me more.

Hey, is the EEG a multi-day, inpatient one, or a regular 1 hour one? Multi-day video eeg's are hard to schedule. Regular ones are easy to get in to.

 

[Mommie2my4Angels]

I just wanted to add that I also took Tegretol along with 5 mg of folic acid and prenatals sometimes as much as 1600 mg of Tegretol and I have a very bright and happy 2 year old boy sitting next to me I am begging to go to bed for the night it is possible. If you are pregnant I hope your neurologist is as wonderful as mine was he brought me through it beautifully!

 

[stockiingmelissa]

Endless - the EEG is supposed to be a normal 1 hour one. I already had the video monitoring one and that showed some "hiccups" I will call them. The original one hour one I had also showed the disruptions.

Mommie2my4angels - Unfortunately the neurologist I have is a know it all jerk. I am looking right now to see if I can find someone different. Thank You for that little boost of confidence I really needed that I was just really worried that something would happen to the baby.

 

[seizingbeauty]

Hi Melissa,
Congratulations!
I can't tell you much about being pregnant with E. My first seizure was during labor. As to being a mom with E, as Endless said, babies are amazingly resiliant! My daughter is 12, and one thing that puts a smile on my face is that she has learnt some amazing life lessons helping me out. My E has helped her become a better person...
Best Wishes
Cat

 

[skillefer]

Gotta love um...

..idiot docs that is...

Here's my advice...as a mom who has e...

1) GO GET THE PREGNANCY TEST CONFIRMED...
(preferably by your pcp)

2) get an ob/gyn that has experience working with moms with e....mine did and handled my med change quite well... (yes, I did a med change during the pregnancy...not usually suggested, but my ob/gyn was phenomenal...and worked great with my neuro.)

3) make sure your taking folic acid on top of prenatals. (helps reduce risk of birth defects)

4) remember to relax and enjoy the pregnancy. ( As my neuro told me, there is NO such thing as a 100% safe med...even tylenol in high enough doses can mess you up...and stress will do more harm to you and the baby then anything else....so relax and enjoy)

 

[Nakamova]

I hope you were able to talk to your regualor doc or OB/GYN ASAP! If you are pregnant, the IUD needs to come out ASAP to prevent a miscarriage The below is from and IUD info site:

If pregnancy occurs, it is important to remove the IUD immediately (that day). The normal spontaneous miscarriage rate is about 18-20%. For women who conceive despite an IUD, the miscarriage rate is about 25% when the IUD is removed immediately. If the IUD is left in place, the miscarriage rate increases to about 50%, and many of those are septic mid-trimester losses which are particularly unpleasant and which are associated with subsequent infertility in some cases.

 

[epileric]

Have you seen this thread?

http://www.coping-with-epilepsy.com/forums/f42/if-youre-thinking-getting-pregnant-9721/#post98835

 

[stockiingmelissa]

No I had not read that thread so thank you for it. My personal OB/GYN is conveniently out of town until friday *sigh*. I am mostly concerned with falling on my stomach and with the IUD if I am in fact pregnant. I am hoping I am not due to being new to the seizure world but will cope if I am. I will come back and look at some of those links later. I spent most of the day in the hospital because of my jaw *grrrr* but will definitely come back when I am not so tired.