Previous Bipolar Diagnosis, High Risk for PP

[grimpy]

Hi everyone,

I am currently pregnant with my first child, and I'm feeling really at a loss as to how to proceed with my care.

I was diagnosed with bipolar disorder (type 1) nearly 6 years ago, was hospitalized twice for mania, but have been symptom free for the past 4.5 years while taking lithium.

When I found out I was pregnant, my doctor suggested I go off my medication, which I did at 5 weeks, and I am now at 35 weeks having had zero symptoms or problems mood-wise so far.

What I'm struggling with is the fear of the postpartum phase. I desperately want to breastfeed my baby, but my doctor has been very strongly trying to convince me otherwise, and although I genuinely believe she is on the very cautious side (her first reaction when I told her I was pregnant was to suggest I should be admitted for the duration of my pregnancy!), I can't really tell if this is just her overreacting, or if I should be adequately frightened into skipping breastfeeding and going back on lithium right after giving birth.

I have an amazing support system, my husband will be home for the first month after the baby is born, I have been keeping a mood and sleep journal for months and will see my psychiatrist weekly after baby gets here.

Am I being overconfident in believing we could catch this very early on and, even if it does develop, I could avoid hospitalization? I'm ready for the possibility that I will end up in the hospital no matter what (we all know even if I take medication it is no guarantee) I just want more info so I can really weigh my options.

I'd love to hear about people's real experiences. Thanks for any help or advice!

**I am currently living in the Czech Republic, and unfortunately it isn't possible for me to change doctors (took me more than a year to find this one)

[Ellie_at_APP Partner]

Hi, and welcome to the forum. and congratulations on your pregnancy! It's great you've managed to come off meds and stay well.

I'm afraid I can't offer you any personal experience as I had PP out of the blue with my first and only child and I don't have a bipolar diagnosis though I am sure there are people on here who will have personal experience and be able to share with you. However I just wanted to give you some links for information which may be helpful.

Your psychiatrist does sound very cautious, but it is good s/he is looking out for you... There are some anti psychotic meds which are 'safe' to take in pregnancy and breastfeeding. I wanted to give you a link to a website about mental health medication which gives excellent information about side effects, research etc including if it is safe to take in pregnancy or when breastfeeding. Maybe you could let you psychiatrist know about it too choiceandmedication.org/ncmh/

For example I know that Olanzapine is OK.

It is definitely possible to stay well after birth from the stories I have heard. As others will say on here it is essential you have a clear plan, and I have heard that it's really important that you sleep well at night, undisturbed, so to avoid night feeds for the first few weeks if you can. It's so good your partner will have a month off, so perhaps this is something he could do.

I wanted to give you a link to our guide on pregnancy if you are at risk of PP. It's free to download. It should give you lots of information that will be helpful. Again, it may be helpful to print it off and give to your psychiatrist! The link is here: app-network.org/what-is-pp/...

Again, congratulations on your pregnancy and I hope the responses you will get will be helpful.

[Cicerenella]

Hi, congratulations on your pregnancy! I have type one as well, and had a major psychotic episode following a stillbirth induction at 21 weeks. I'm also a midwife, but medical management of BPAD is completely outside of my scope of practice, so what I know is mostly from my own experience - although I do have the benefit of access to journals and information, and having looked after women with BPAD and PP.

I have two first cousins who have both had PP - one already had a diagnosis of BPAD, she was medicated with antipsychotics and had moderate depression after her first baby, after her second she had lithium and she became floridly manic, and her third she had quite a high dose of olanzapine and stayed well. The other had first onset PP but later was diagnosed BPAD - with her second and third pregnancies she recommenced her usual medication (fluoxetine/olanzapine) immediately after giving birth, and she stayed well.

The NICE guidelines (UK based) about treating perinatal mental illness including bipolar disorder is to give antipsychotics as the first line of treatment if somebody is pregnant or wishes to breastfeed. My professional experience has been that most women will start on an antipsychotic either late in pregnancy or immediately after giving birth, and will be carefully monitored following birth - if there is any sign of mania or psychosis lithium will be added and you will probably be admitted to a mother baby unit. Most antipsychotics are safe during breastfeeding if baby is well, they may cause sedation in some babies but that mostly happens with low birthweight (and prem) babies. I think it comes down to what you want - it would be naive to say that your doctor is overreacting (maybe a little, but shh :P) because the risk of relapse is statistically very high, especially if you're unmedicated - but, if you want to breastfeed you are able to be medicated AND breastfeed. Or you could decide that you don't want to try a new drug that you don't know how you'll respond, and you may want to go back on to lithium.

The most common antipsychotics I've seen have been olanzapine and quetiapine. I am currently on olanzapine (along with valproate) now as my regular maintenance medication, and I assume that I will probably remain on that during pregnancy and the postpartum, but I haven't had the conversation with my psychiatrist yet (I'm a bit scared to bring it up).

[Hannah_at_APP Administrator]

Hi grimpy and welcome to the forum! I have some experiences to share which I hope will be helpful to you together with the info others have already shared. I had PP "out of the blue" with my first child in 2009 and had various treatments and medications, including olanzapine and lithium, together with about 3 months in hospital/ Mother & Baby Unit.

I had a 2nd child in 2013 and although I don't have a bipolar diagnosis, was aware that I was at high risk of PP. There was nothinng that could absolutely guarantee that I wouldn't get ill again, so it's good to hear that you are prepared and thinking ahead - this is so important. Having a perhaps over-cautious care team could work well for you to get plans in place, as in my experience, they were fairly clueless and seemed to think it wasn't an issue!

We made a care plan, as a family, and wrote down a brief history of my previous PP, triggers, what treatments had worked (and what didn't), together with a plan for the birth and immediate postnatal period. When I managed to get a mental health worker (I had been discharged and didn't see anyone until late in pregnancy), they took the plan we'd written and added it to their systems, it was in my maternity notes etc. For us, the plan was about:

- minimising stress (I had a planned c-section after a previous emergency one)

- taking a low dose of olanzapine on delivery (which had previously worked well for me)

- bottle feeding to be able to share the demands of a newborn with my husband who was very supportive, together with promoting sleep and rest. I know feeding choices are very personal and a fairly emotive subject pp aside, but I had struggled the first time round and thought it was something to help try and keep well, with one child already having been fine after I'd had to give up trying when admitted. In fact, he thrived when he hadn't been before. There really is quite a lot of guilt around on this subject I find though!

- minimising visitors and having a "quiet time" at home to avoid becoming over-stimulated

- having contact details of who could be called on should I get ill, both professionally and friends, including an extra couple of days in hospital for monitoring.

We had the mantra the whole way through that things could not be as bad as before, when nobody knew what was happening, and that if I became ill it would be caught quickly and treated appropriately. It did feel like a bit of an exercise in risk management, but we felt it needed to be like that. And the good news is that I stayed well, and have been since!

Having the plans in place felt like the right thing to do - I would have done anything to try and minimise risks and who knows if it had anything to do with it that I stayed well but for us it was worth it. It sounds like your care team are already on board with this which is great. The mood and sleep journal sounds a really good idea too and having got to 35 weeks symptom-free must be such a relief for you.

I hope some of this has been helpful, please feel free to ask any more questions and I hope that your pregnancy continues to go well. All the very best with it, take care, xx

[jessieh APP]

Hi Grimy,

Thanks for writing on the forum, I'm glad you found us. I thought I'd write about my experience, as I mix fed with bottle and breastfeeding for around 6 months, on medication.

I had PP 'out of the blue' when my son was a couple of weeks old. I was admitted to hospital and had 2 weeks apart from him, followed by 3 months in a Mother and Baby unit (MBU). I had been desperately keen to breastfeed, though I really struggled. I don't know if this was part of the reason I got unwell, but it certainly didn't help. I think this is something to be very aware of, many people struggle and it can be extremely stressful in the moment. To keep well I'm sure you'll be advised to try and keep stress to a minimum, and get as much sleep as you can.

If you decide you would like to, I'd suggest you are armed with all the info and support. Watch videos, maybe even ask someone you know that is breastfeeding if they would mind showing you! It is a real skill to master! We have breastfeeding trained mid-wives, breastfeeding counsellors and breastfeeding cafes here in the UK - perhaps look this up for where you are? It is better to be forearmed with info. Maybe you could also get bottle feeding equipment and milk as a back-up and make sure your partner is up-to-speed on how do this. Then at least you'll feel like you have some control/have made some of the decisions if you go down that route (for me, even just the choice of bottle milk brand to use was important for me).

While apart from my son I had a breast pump, and then staff at the MBU supported me to try feeding again when we were back together. I still found it difficult and in reality I think Archie would have been just as happy without me doing so! He was bottle fed at night by staff and then when I came home by my partner. I did a feed once/twice a day and that suited me, I tried pumping still and did feel sad when at 6 months Archie showed little interest in breastfeeding, so I stopped then. I was on a combination of 2 medications at first, though I can't remember the name of one of them. The other was Olanzapine. I then continued with just olanzapine for 1 year.

More than happy to help with any questions. Wishing you all the best.

Jessie xx

[jessieh APP in reply to jessieh]

Hello again, I just remembered it was clonazepam as well as olanzapine right at the beginning when I was ill. I don't know the dosage levels though, sorry.

All the best,

Jessie xxx