A risk worth taking; a list worth making

Back when I was first diagnosed my dad had what turned out to be a genius idea: to journal about my illness. Every day he wanted me to write down four things: the date, how I was feeling, what meds I took that day, and any side effects I was experiencing. He was determined to figure out what the heck was happening to his little girl, and this little idea was one of the only things he could get me to do which in the end would help in more ways than we knew when I started.

After my most recent hospitalization (which was right after we found out I was pregnant with our second child) I had a very hard time bouncing back. It is true that I respond very well to Lithium, but at the time I was adamant about not going back onto Lithium until I was past the first trimester because of the risk of Ebstein’s anomaly. In reality, my risk was only about 6% if I had used the Lithium during the first trimester, but I refused. And I am very stubborn. And determined. And I got my way.

But looking back I wish I would have just used the medication which I so desperately need flowing through my bloodstream each and every day. Lithium to me is like insulin is to a diabetic. I know this now.

So instead of using Lithium during the first trimester, my psychiatrist agreed to use Haldol to treat my mania. It is the drug that they inject into my backside when I am hospitalized because I reject all oral medications when I am manic. Lucky me. They would have to use three people to hold me down while the fourth administered the drug. It would start working within fifteen minutes – by that point I’d have been walked back to my room and tucked into bed to sleep and let it work its magic. Once I was discharged from the hospital, I had my oral prescription for Haldol filled and continued on it for a few weeks.

Those weeks were such a huge struggle for me. Mentally I felt as though I could not put my thoughts together in sentences. Simply speaking a basic sentence was so incredibly difficult. I barely went out in public for three weeks because I was so afraid of not being able to hold a basic conversation.

I also had a very hard time writing. I found it hard to journal then, mainly because it was so hard to think let alone use a pen to write down those thoughts on paper. My family blog which was normally filled with descriptive paragraphs of what I had been doing with our son each day, were now filled with just little video clips and some pictures here and there. I felt paralyzed to an extent. It was almost as if I could feel the neurons straining so fiercely to fire off some kind of signal. But the neurons were back-firing. Badly.

The chemicals in my brain were so completely off and I wanted more than anything else to just turn them back on.

My dad had another brilliant idea during this difficult time. He told me one morning when we were talking, to make a list of 10 things I wanted to accomplish that day. They could be as simple as unload the dishwasher, make the bed, fold the laundry, or bake cookies with my little man. This way, I could look back on my day and see all the things I was able to get done. This simple method of goal-setting worked like a charm for me.

I still use this tactic to this day. I love to sit down in the morning and jot down the things that I want to accomplish that day. The weeks that I do it, I feel like I get so much more done around the house. For my family and myself. It’s such a great thing to build into your daily routine.

Around week 10 of my pregnancy, fed up from the daily struggle with my malfunctioning brain, I decided to do something about it. I distinctly remember the day I called my high-risk OB-GYN to ask him if I could just go back on the Lithium right then, instead of waiting until the end of week 13. I was pretty much in tears on the phone and he said that I needed to do what was right for me. And that it seemed like I needed it. It being the Lithium. I said yes, and felt an enormous weight lifted off my shoulders when I hung up the phone.

After about a week back on Lithium I began feeling like myself again.

It was a well-calculated risk and one that I was glad that I took. Having to choose between taking a medication while pregnant or struggling with a mental illness that causes you physical stress and trauma is one that I wish no woman would have to make. But sometimes we have to make hard decisions. I was very scared and felt an enormous amount of guilt for having to subject my unborn child to a potentially harmful substance while she was growing inside of me, but if I had to do it over I would do exactly the same thing.

I’m forever grateful that she was born healthy and today is a thriving toddler who pushes the limits every single day. And I’m thankful that I have such a supportive husband and parents who were right there with me every step of the way encouraging me to make the best decision for me at that moment.

National Pregnancy Registry

My daughter turned 8 months old yesterday. About two weeks ago she started crawling and just yesterday she started babbling non-stop. I am continuously amazed at how quickly she is growing and changing. And I am intensely grateful that she is a happy, healthy baby.

I was hospitalized for bipolar mania when I was just four weeks pregnant. My husband and I had been trying to conceive our second child for seven months and it had finally happened, only to cause me such excitement that I couldn’t sleep which lead to my mind racing beyond belief forcing him to sign me into a psych ward for four days. I had been working closely with my psychiatrist to come off the Lithium for the first trimester once I found out I was pregnant and then once the mania took over from the excitement of finally becoming pregnant, I continued to refuse medication because I thought I was doing what was best for the baby growing inside me.

Looking back now I know how very wrong I was.

The main risk that the baby faced if I stayed on Lithium was Ebstein’s anomaly, a heart defect. The general population has about a 3% chance of this particular congenital heart condition, and the risk increases to around 6% for a person taking Lithium during pregnancy.

In my case the benefit of staying on medication greatly outweighed the risks of me becoming manic and needing hospitaliztion, and I definitely knew this having done a ton of research beginning back before I became pregnant with my son. But with his pregnancy I was able to somehow stay medication-free throughout those nine months and one month after his birth. And I think I was feeling some mommy-guilt in wanting to give this second baby the same drug-free environment in which to grow and thrive. It only seemed fair.

After spending four nights and five days in a psychiatric facility near our house, I was finally released to the care of my regular psychiatrist after being stabilized on Haldol via injections because I was very resistant to oral medications at the beginning of my hospital stay. They also used Zyprexa since historically I responded so well to it. Of course I was scared to death about how these medications were affecting the baby’s development, especially because there is so little research out there on the use of a-typical antipsychotics during pregnancy.

This is what lead me to find the National Pregnancy Registry via an online search. They are collecting information from women who have taken certain antipsychotics during pregnancy and after childbirth to hopefully shed more light on the safety of these medications during pregnancy. They also need women who are currently pregnant and NOT taking these medications, to serve as the control. If you know someone who is willing to participate in this on-going study, please direct them to the site to sign up to join.

It is easy to participate – just a series of brief phone interviews and some completed paperwork releasing medical records is all it takes. They do a baseline interview during the beginning of the pregnancy, a 7-month interview, and a postpartum interview. Simple. Once you finish it will give you a good feeling knowing that you are doing something to help improve the quality of healthcare for pregnant women in the future.