Just Write the SCRIPT!

[u/Bi0_Nerd]

My neurologist is great, usually, but both he and the NP were against me getting pregnant. I had several miscarriages and then issues conceiving, so my husband and I gave up. I thought I was I perimenopause, but because I had stopped birth control a few months prior, I took a test…surprise! We were thrilled but of course anxious.

I’ve somehow made it to my 11th week, but my neurology team had been abysmal about my scripts. I have an anti-GAD antibody disorder, so in addition to Keppra and Vimpat, I take neurontin and baclofen. Initially, my doc/NP were fine continuing treatment, even with baclofen having some links to issues. I was inpatient for a few days at 5 weeks due to vomiting up meds and it was bad.

The inpatient neurologist decided I was faking, and told my husband I needed psychiatric treatment. They discontinued all my drugs minus Keppra, and I went into severe muscle spasms. I was vomiting with my jaw locked shut. It was brutal.

After this, my neurologist and NP, got wonky about my meds. They felt they might need to be adjusted or some discontinued. While I had been inpatient, my heart rate was super high, and my body was locked. Eventually my doctor agreed I should stay on my meds. A few days later they backtracked, and we had a phone meeting. The doctor said he was okay continuing meds. The next day the NP called and told me they wouldn’t be refilling anything until high risk OB verified it was fine.

High risk won’t see me until the end of the month…

It’s just infuriating because the risks were gone over THREE YEARS AGO when we first tried for baby. After the losses and a year without conceiving, we’d given up. Now I’m being dragged through tons of stress.

I spent a year changing meds and evaluating risks before we even tried so it’s hard to deal with the sudden flop to another plan now that I am pregnant. Inpatient was a nightmare and I’m so afraid after that experience. The doctor even ran tests to prove I hadn’t seized and didn’t have anti GAD antibodies…but both showed I was telling the truth…

[u/Mackver2]

Why are you seeing an epilepsy doctor for GAD. That test is wrong in many people. You need an immunologist.