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Advice re care plan/preventative medication for 2nd baby following PP

Cupar05 profile image
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I am currently 24 weeks pregnant with my second child. I developed PP following the birth of my son in 2009. The onset of PP was very quick. I was showing signs within about 3 days from the birth and was admitted to my local MBU unit within 7 days of the birth. I had had a traumatic labour experience where I had been neglected by the midwive when the maternity unit was over capacity. I was left in triage in established labour for around 5 hours reaching 8cm dilated without any form of midwife support or pain relief. There was problems establishing breast feeding and my son became jaundiced and dehydrated. As a result of all of this I was sleep deprived and barely slept more than a few hours the week after my son's birth. I began to think that both my son and I had died while I was in labour and that I was in heaven.

I was admitted (with my son) to an excellent MBU unit and was very ill for a couple of weeks while they tried to find the right medication for me and once I was given olanzapine my symptoms subsided. I was fortunate to only experience the manic side of the illness. I was discharged from hospital a few weeks later and within a couple of months was able to stop the medication completely. I was very lucky in that with a supportive network of close family and friends as well as an excellent counseller experienced in post natal illness I made a full recovery and was able to bond well with my son and went on to fully enjoy motherhood. I was very fortunate not to suffer from the depressive symptoms that so often follow this horrible illness and I have stayed well since.

After much discussion and after taking advice from our gp and local hospital, my husband and I reached the decision that we did want to have another baby and that with the right support we felt this was the right thing to do for us as a family. The complication is that since the birth of my son we have moved to a different health authority and although if I was to become ill again I would be referred to the same MBU unit as before, they are not able to see me antenatally to discuss any care plan or medication. I am therefore under the care of my local psychiatric service during the pregnancy but my husband and I have both been very disappointed in that we have had very little involvement from them so far. I had asked at the outset to be referred to a CPN who I could see through the pregnancy to discuss my concerns. I have met with her a couple of times and she seems excellent and grasps the issues involved. I also have the support of two excellent community midwives who are helping me with decisions regarding a longer post natal stay on the ward and also with support from night feeds etc given the importance of sleep. However, I have had absolutely no contact from the consultant psychiatrist who is supposedly in charge of my care. I am becoming increasingly anxious about this as I keep asking for guidance regarding the medication options I have but so far am not getting any answers. I have asked to meet with him but so far have not heard back. In particular, I am wondering about whether I should simply take olanzapine immediately after the birth or if we should adopt a wait and see approach and only take it if I start displaying symptoms. I am concerned about immediately taking olanzapine after the birth as I remember the detached/numb feeling it gives you and am concerned about the implications this might have with my bonding with my baby. I know there are other medications but given we know that olanzapine worked the last time I am presuming that it would be better to stick with that than experiment. I have also read a little on here about the benefits of taking progesterone supplements to regulate hormones/mood after the birth but am not clear whether this is still something medics advise.

So my questions to any ladies out there who have bravely gone on to have more children following an episode of PP are this:-

1. What sort of care plan did you have in place post natally?

2. What are your views on taking medication as a preventative? Do you think the benefits outweigh the side effects?

3. Has anyone ever used the 2nd opinion service from Dr Ian Jones mentioned on the app website? Given the lack of input from the psychiatrist we have been assigned to date we are wondering if this is something we should explore.

Any guidance/views that anyone can provide me with would be much appreciated...

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HopeafterPP profile image
HopeafterPPVolunteer

Hello Cupar05,

Firstly congratulations on your second pregnancy!

I too went onto have a second baby after having PP with my first and I know how agonising a decision it can me to embark on a subsequent pregnancy or not. Even though we wanted to have another baby, I know that for me and others, the following pregnancy is a very worrying time, a roller-coaster of emotions, because of all the "what if?"s about PP happening again. And the worry about having another traumatic labour – how awful for you to have been left unattended in triage for so long without help or support. There are lots of reasons to hope that it will all be different next time especially because you sound very well prepared.

I'm glad that you have two great community midwives and an on the ball CPN. Is there any chance of being referred to an obstetrician who could then “pester” the psychiatrist into seeing you about medication? I'm guessing there isn't a specialist perinatal psych team in your area otherwise you wouldn't be left with these questions.

Before I forget there’s a question posted earlier in the site that may have some helpful answers for you as well (you’ll see some of my answers in there too):

app-network.healthunlocked....

I will have a go at answering your questions as best I can, but please do ask further questions (I'm sure you'll have loads) and I will pop in again to answer them to see how you are getting on. [I'm so glad you have found us on this forum because if anyone can understand your worries about your forthcoming postpartum period than the ladies on here can, and there is a wealth of experience to be tapped into.]

Firstly, I'm sure you already know this, but it's important to remember that with subsequent pregnancies after PP there isn't a clear set of guidelines to follow to prevent a further PP from happening with 100% guarantee, but there are certain things that can be done to give it the best shot. Plus, each care plan is likely to be different for every woman because each PP episode is individual and presents slightly differently. For example, my PP came on within hours of the birth, I was hospitalised by Day 5 for 3 weeks with a psychosis that went on about 2 1/2 weeks (some mania but mainly psychosis) and when I was discharged I fell into a deep dark depression that lasted till my son was about 16months. Still, there will be things in my care plan for my second baby that could be really helpful for others like yourself. Regardless of how our PPs differ, we all are desperate for it not to happen a second time.

As this has been a rather long post I will post my answers to your questions on a different reply to make it easier for you to refer back to or read in chunks (sorry, I am known for long answers ... eeek!).

Take care, N x

HopeafterPP profile image
HopeafterPPVolunteer

Ok, so here are my personal answers to your questions above. I hope something may be of help to you:

1. The main points of my care plan were:

• Taking medication ~ quetiapine ~ in the last trimester (*originally it was to take immediately after birth and I ended up taking it from week 33)

• Making my labour as free from trauma and pain as possible so I planned an epidural ahead of time.

• To have a side-room on the postnatal ward where my husband was given permission to room-in with me ahead of time [this was extremely important to me so that I had his support emotionally and physically 24/7 at this vulnerable time]

• To not breastfeed as I did not want my baby having more of the anti-psychotics than necessary and at that time no-one could tell me if quetiapine was safe in breastfeeding or not.

• Adequate pain relief for my fibromyalgia that flared up after birth last time, so I had a stash of morphine in my hospital bag ready and waiting!

• Sleeping tablets available or to be prescribed quickly just in case insomnia started again.

• In my notes I had access to all the crisis team and out of hours numbers needed if the

worst happened or we had any fears.

• Daily or Bi-daily visits from my care-coordinator** (could be telephone visits if less intrusion wanted) for the first week, then every 3 days in the second until past the 10 day mark.

• Midwives to visit sporadically and be arranged ahead of time (no popping in unannounced so I wouldn't be bombarded by people in the house all at the same time)

• Crucially, any midwifery professional who had any concerns was to ring my care-coordinator and go through her.

• Also, at the front of my antenatal notes, I had an A4 sheet with my medical history of PP, my medication plan and a few other essentials that really helped. I did not want to have to repeat the story of my PP every time I saw a different professional, or have them flicking through to find the right page. This home-made summary right at the front was particularly helpful during labour so that I did not have to answer difficult questions at that time. It was also very useful on the postnatal ward – the phrase “It’s all at the front of my notes” became a mantra on one occasion!

• Lastly, my notes were distributed to the mid-wife led units and the main hospitals (even the neonatal ward in case baby had withdrawal from the medication I was on) and I was flagged in some red book so that everyone seemed to know how serious it was if I were to become unwell. At first this was a little unnerving but then I found it reassuring that the midwives were taking me seriously and would treat me extra carefully as I was high-risk.

[** I was still being cared for by the Early Intervention In Psychosis team who looked after me with the PP after my 1st (they take on clients for 3 years!) so I was under the care of a brilliant care-coordinator who helped orchestrate lots of my care plan for me.]

2. Medication as a preventative: well, it worked for me! Although, I must say it was an agonising decision and I shed quite a few tears over it. I had always planned to take a preventative straight after delivery because I became ill so, so quickly after birth last time (within hours I believe. I had a consultation with a Dr from my new local MIMHS team, an expert in PP, late in my pregnancy at week 31 or 32, and after listening to my previous history of PP she upped the chance of getting ill again from 50% to 75% and also said that given how quickly I became ill, taking the meds after delivery would not give them long enough to get into my system to prevent an episode. With this in mind I felt like I couldn't say no to taking a low dose of anti-psychotic as soon as possible, but I didn't finalise the decision until after I'd consulted with a neonatologist about how it would affect my baby. He actually felt the risks were low in this late stage of pregnancy and the risk of me becoming unwell outweighed the risks to baby – it anything baby may only experience a little withdrawal that could easily be managed. So I took meds from week 33 ... I also felt I was doing it for my 2 year old as I couldn't bear to think how it would affect him if I had PP again with him much older.

So in summary, I am all for preventive medication but it does depend on an individual case as to when it is taken. For me personally the risk of no medication at all would be too great. My fears of the meds making me numb and detached were also the same as yours, however I didn't feel anything like that on them as a preventative so I wonder if that was actually the illness itself and not the medication. The only side-effect I had from the medication, which I took until my son was 4 months old was sleepiness – during pregnancy this sleepiness was unbearable but afterwards much more manageable, however night duty with baby was almost impossible and my husband did a lot of night shifts because I could not wake easily on the meds.

What the medication did do for me coupled with the great care plan was give me a second shot at motherhood and it was so amazing to be well, to bond with my son straight away and to experience the joy of having a baby. I feel very blessed to have been given a second chance. I actually felt that I became closer to my first-born too. My second baby went on to become critically unwell (unrelated to medication in pregnancy), but even through all that trauma and stress, being on the medication kept the PP at bay. I did see some signs on the first night after his birth that were so similar to the first time round (racing thoughts, complete insomnia) but I strongly believe being on the medication at a therapeutic dose stopped them developing into PP. I'm not sure I would have been a case that could have avoided a second PP without medication but I can never know for certain.

3. Dr Ian Jones: Yes, I used Dr Jones’s free consultation service and it was brilliant. I would say go for it! He is a very lovely, family man and a leading expert in the field of PP. He’s passionate about helping women with a history of PP and will give you a very thorough consultation. He doesn't cost your PCT anything to refer and he will then write a letter of recommendation to your GP or team looking after you (it may even help speed things up with your psychiatrist). I found Ian’s advice to be very easy to take on board and he clearly laid out all the options for us – we actually used his service as a means to help us decide whether to try for another baby so I wasn't pregnant when I spoke to him. He will talk you through all the pros and cons of medication at different stages or not medication at all. So I would highly recommend getting in touch with Dr Jones through the website as soon as possible and hopefully after seeing him you will feel less anxious.

Apologies again for such a long post, but I always feel I want to be thorough when it comes to talking about care plans second time round.

If you would like to ask any more questions please do not hesitate to probe further.

Take care and all the best with your care plan .... N x

andrea_at_app profile image
andrea_at_appVolunteer in reply to HopeafterPP

Lots of really great points there, thanks N x

HelenMW profile image
HelenMWVolunteer

Hello there, I can just tell you what steps I took for my second and third pregnancy. I looked into progesterone (Katherina Dalton) , oestrogen (Professor Kumar) and lithium treatments (Professor Brockington). I could breastfeed only with the progesterone so that was my choice. I went into labour with my bag packed with ampoules of progesterone to be administered for about a week following delivery and I also followed a routine of maintaining my blood sugars by eating a three hourly starch diet. Oatcakes and savoury crackers etc. I am sure that forewarned is forearmed and people will be looking for signs if you are becoming unwell and they will know what to do. I also had a good support arrangement at home and I had a place arranged in a mother and baby unit just in case. I never knew whether to try to do without the medication for my third pregnancy and just opted to play safe by taking the progesterone again following delivery.

The help on this site is absolutely amazing and such a lot has changed since my episode in 1988. I do hope all goes well for you and look forward to hearing from you again.

Helen

Naomi_at_app profile image
Naomi_at_appVolunteer

Hi Cupar05 and firstly congratulations on your second pregnancy.

It must be very disappointing for you and your care team that the consultant psychiatrist has not had input into your plan. I would definitely recommend a conversation with Ian Jones, or you can also ask your CPN to look into whether there is a liaison psychiatry specialist in perinatal psychiatry in your geographical area - often they will happily offer advice outside their immediate location.

Thought I would outline my medication choices with our second pregnancy, hope this is helpful

- I had a pre-prescribed course of Olanzapine and Zopiclone (sleeping tablets) to take with me onto the postnatal ward. This was written up for the midwives so they knew why I had it with me and were happy for me to decide if and when to take these.

- I chose to 'wait and watch' for any early signs of PP (sleep disturbance, racing thoughts etc)

- If you preferred to take Olanzapine immediately after birth, there is a work-around to enable some breastfeeding (if you want to) which you could discuss with your CPN & midwives. You take the Olanzapine at bedtime after baby's last evening feed, express and discard 2 feeds in the night and then can breastfeed for the rest of the day. However, I personally felt this could be very draining and decided not to put myself under this pressure once I began Olanzapine.

- Hypomania did begin at around day 5-7 so I commenced Olanzapine and did not have any recurrence of psychosis

- I would also recommend including in your plan any antidepressants which have worked for you in the past, as I unfortunately did have a fairly long period of depression in this second pregnancy. It took us a while to find the right treatment as my usual med didn't work (typical!) but things resolved quickly for me once I was prescribed Venlafaxine.

Hope things go really well for you and you feel confident in your medication plan once you reach the due date.

HopeafterPP profile image
HopeafterPPVolunteer in reply to Naomi_at_app

Hi Naomi,

Thanks for sharing your preventive plan - it just shows how individual these plans are and that there are a multitude of ways PP can be prevented, which I think means there is a lot of hope for subsequent postpartum periods.

I am very curious how quickly the olanzapine relieved the hypomania and what the exact symptoms of that were that you experienced. I am not planning on baby no.3 by any means (eeek!) but I often wonder whether if a pregnancy did happen again, I could prevent an episode of PP by taking medication after delivery. I'm not sure I would be brave enough given the advice I had last time to wait till I saw symptoms, hence my curiosity about what you had to endure and for how long. Olanzapine is a very fast acting drug, much quicker than the quetiapine, which I think was one of the reasons why I was advised to take it during the last trimester rather than wait. Did you have to stay on the olanzipine long?

Thanks again Naomi,

N x

caroline-p profile image
caroline-p

Hello,

Like you I had PP following the birth of my first child. My experience of labour in an unsupportive environment was extremely stressful. ( This was 1982 in Wales and in the hospital where I gave birth certain midwives were actively hostile to the presence of fathers, and to other NCT taught ideas which are now commonplace.) Labour was prolonged, more than 30 hours, I was allowed no access to food, and eventually induced. I was delighted with my baby, and was left alone in a side ward with her without a bell for the rest of the day. I felt great pleasure in managing to get her breatfeeding unassisted. Still no-one offered me food, and in my state of hunger and excitement I could not sleep. By the time I was allowed home 36 hours after the birth I had eaten nothing but a bit of toast and a sandwich in three days, and was running on adrenaline! Back home I could eat, but sleep just wouldn't come, and by day 5 I felt the cogs in my brain were slipping, and was writing myself notes and memos to try and capture my thoughts. When I began to scream a GP was summoned and I was sedated and sectioned. I spent a terrifying week in a general psychiatric ward before having the great good fortune to be moved to a MBU at Oxford.

I was very keen to have more children and to avoid every aspect of my first experience. On achieving pregnancy I went to my GP and requested home birth, and progesterone therapy ( Katherina Dalton) immediately on delivery and by pessaries for the following fortnight. I snacked during labour, and enjoyed a full breakfast after the birth. I could sleep when I needed, and had my husband and toddler around me. My greatest fear was than some problem would occur which would deprive me of my home birth and send me back to that hospital. I was fortunate to achieve two home births three and six years after the episode of PP, both with progesterone and I felt very well.

I cannot say what proportion my home environment and the medication played in keeping me well, but there seemed no contra-indication to taking progesterone and PP is unforgettably dire. I used it for both births, and breast fed both babies.

I wish you very good luck with your second birth. Do try and avoid situations in which you feel anxious, stressed and out of control of your treatment.

Naomi_at_app profile image
Naomi_at_appVolunteer

Hi again

Found this relatively up-to-date article which reviews the best evidence for treatments and preventative treatments in PP. The general consensus is that there is not sufficient evidence to recommend hormonal treatments such as progesterone or oestrogen (which is a shame as I think it's just that large-scale studies have not been done)

ncbi.nlm.nih.gov/pmc/articl...

Hope things are going OK with your planning :)

andrea_at_app profile image
andrea_at_appVolunteer in reply to Naomi_at_app

Very interesting article, that's what I've heard about hormonal treatments too.Thanks Naomi :-)

HopeafterPP profile image
HopeafterPPVolunteer in reply to Naomi_at_app

Looking forward to reading this article in depth when I have more time.

I had heard that too about the lack of evidence about hormonal treatments. I did ask Dr Jones about it and he couldn't advise the progesterone due to the lack of studies etc as only data they have to date is for preventative anti-psychotic medication. It is a shame as I feel that it must all be linked to the change in hormones and so seems an obvious route to prevent it.

Thanks for this Naomi x

Lilybeth profile image
LilybethVolunteer

Hi, I think a consultation with Dr Ian Jones would be a step in the right direction. Years after my episodes in 1975 and 1981 I met Dr Jones and his team by chance after responding to an article in the local news regarding research. In the 70's due to the stigma of mental illness, for all the right reasons, my mother advised me and my husband never to speak of what had happened to me either inside or outside the home .... so I never did.

As you can imagine, meeting Dr Jones was such a relief as he was so kind and understanding. After access to my medical records he confirmed that I had suffered PP following both births. That's why this is such a great forum to chat with PP friends about our experiences and help if we can.

Rest assured that things have changed for the better since the 70's and 80's and I wish you well.

HopeafterPP profile image
HopeafterPPVolunteer in reply to Lilybeth

Lilybeth, I can't imagine how hard that must have been for you to keep your PP (which you didn't even know was an illness!) a secret for so long. What a relief for you to meet someone who not only understood but was able to clarify what happened.

You're right, it is such a great forum - I'm so thankful to APP for all the work involved to allow it to go ahead and grateful to all the brave women and partners sharing on here :-)

N x

Hannah_at_APP profile image
Hannah_at_APPAdministrator

Congratulations on your pregnancy first of all! Such an exciting yet worrying time for you, I hope you are getting some good info here and things are moving in the right direction for you. Getting referrals is so important isn't it? To know that people take you seriously can be such a struggle I have found (although I haven't had another pregnancy yet). Your story sounds very similar to mine, I had PP in 2009 after the birth of my son, with a traumatic labour, trouble breastfeeding, sleep deprived, mania yet not depression (aside from a huge confidence knock) and Olanzapine treatment... very similar yet I'm sure it was unique to you also. All the steps you are outlining as options sound like what I have discussed with my consultant for a future pregnancy - I was discharged from the local Early Intervention Team only in recent months, it's been a long slow road but it's so encouraging to hear all the stories on here of how people get better, move on and have successful (if that's the right word) subsequent pregnancies. Have you also written down your wishes, either formally as an Advance Directive, or informally so that your family and professionals know what you do and don't want? I know things can overtake us in emergencies, but having ideas and communicating them in advance was something suggested to me. From what I've read on here and others experiences, the service from Dr Ian Jones also seems like a good avenue to explore. Sorry if this isn't that much help, but I hope it all goes well for you, keep us posted if you can.

Cupar05 profile image
Cupar05

Thank you so much to all of you for taking the time to respond. It really is such a comfort to actually finally receive some constructive answers and to be able to relate to your experiences. PP is such a frightening, isolating illness that it wonderful to have this forum as a resource for help.

HopeafterPP - your detailed answer was exactly the sort of advice I was looking for and I must say it was so heartening to read how much better your second birth experience turned out. It must have been such a difficult time for you during the pregnancy and I can completely understand the decision you reached regarding medication and am so glad that things worked out well for you. I think the thing that is particularly difficult the second time around is the sense of responsibility you have to your older child. The thought of me not being well enough to look after him and to be apart from him is so very difficult and upsetting. That is why I want to try and do everything we can to plan to try and avoid the stressful situations that we had the last time and make an informed decision regarding the use of medication. We also have enlisted the help this time of a wonderful doula this time both for the birth and post natally which I am hoping will help to avoid some of the trauma and stress experienced last time.

Both Lilybeth and HopeafterPP it is good that you speak so highly of Dr Jones and we will certainly push for a second opinion from him. I wondered if you think it would be necessary to have a face to face consultation with him? We live quite a considerable distance and I would not be too keen on travelling as I approach the later stages of pregnancy.

Naomi thank you also for your input which is particularly useful in relation to the benefits of olanzapine. Your wait and watch approach is exactly what I had wondered about doing myself and is something I would like to opt for if possible. Can I ask what sort of dosage you had to take when the hypomania symptoms appeared and how long you had to take it for? The point about breast feeding is interesting and I would agree that the process of expressing and discarding milk during the night would put me under far too much stress and also jeopardise my all important sleep. My feelings around breast feeding this time are tricky. On the one hand I would like to be able to do this as I had to stop last time due to taking the olanzapine. However, on the other hand I remember all too well how stressful and exhausting it was and am concerned about the implications this could have for my own well being. Ideally I think I would like to at least try to give my baby the colostrum in the first few days and then see how it goes. Certainly if I end up having to take olanzapine and stopping again I will be sure not to feel guilty about it as I know that ultimately my mental health has to take priority.

Helen and Caroline thank you for sharing your experiences particularly in relation to the use of progesterone. This is definitely something I would want to explore further. The article Naomi refers to is interesting and although there is nothing conclusive medically my feeling at the moment is that it would not do any harm and is something I should push for. I think psychologically even if it just serves to make me feel I am taking some steps differently this time would help in some way.

All of your advice has served to reinforce my concerns about the complete lack of input from my consultant psychiatrist to date. My CPN told me yesterday that he had agreed to see me towards the end of next month. I will be 30 weeks pregnant by then and felt very upset that this was to be my first opportunity to meet with him to discuss matters properly. I have raised my concerns with my CPN and she has said she will ask him to call me this week to discuss matters and we can hopefully bring the appointment forward too. Hopefully something constructive will come out of this. We were referred to him when we requested a pre pregnancy meeting earlier in the year. Although he was very nice we had the distinct impression that he was not that familiar with PP and he needed to speak with the perinatal psychiatrist who looked after me last time before he could answer our specific questions. When I became pregnant I asked for a referral to the same perinatal psychiatrist but she has said she can't see me antenatally as we are no longer in her health authority and so I have only have access to general adult psychiatric services at my local hospital during the pregnancy - not a specialised team. It is very frustrating given we still actually live within 1/2 an hour from the hospital with the specialised MBU and perinatal team but good old NHS bureaucracy has struck and they do not seem to be prepared to budge on this.

Hopefully I will feel a bit better once I have spoken to the psychiatrist. Meantime, thanks again for all of your valuable input so far which really means a lot.

postpartumproblems profile image
postpartumproblems

Hello Cupar.

I'm not sure how much I can help you but I was in a very similar situation only a matter of weeks ago.

My story is similar to Yours. I developed PP after the birth of my daughter in 2009 and was sectioned a spent a month in a MBU. I too was on olanzapine which rectified the psychosis quickly.

I had a subsequent pregnancy after much debate and again even though I actually work in the hospital the perinatal psychiatrist works in, I was unable to access the specialist care I wanted.

I am now 7 weeks post birth and have stayed well. I decided to opt for preventative meds and started in 5mg olanzapine after birth, this was upped to 7.5 mg as I had a few days of hyper awareness so decided better safe than sorry. I contacted the breastfeeding network and was emailed information that has led me to decide to breastfeed my baby due to the low levels of drug that are passed into breastmilk. I can forward this to you if you would like.

If you have any more questions feel free to ask and I hope as things are so recent I can help!

NicJK profile image
NicJK in reply to postpartumproblems

Hi postpartumproblems , I know this is a very old post but just wondering - did you have any issues bonding with your newborn due to taking Olanzapine?

Cupar05 profile image
Cupar05

Thank you ppproblems for your input and many congratulations to you on the new baby. It is heartening to hear your story particularly given that your experience with your first baby sounded very similar to my own. I am very interested in the low dosage of olanzapine that you have been taking as a preventative measure and have a few questions about this if you don't mind:-

1. How soon after the birth did you have to take the olanzapine?

2. Did you find it helped you to sleep better in the initial few days after the birth?

3. How did it make you feel? I seem to recall that I was taking around 20mg which left me completely zonked out through the night and it was a struggle waking up in the mornings. I am hoping that a lower dosage would obviously not be so extreme. Likewise I am hoping the lower dosage does not give rise to the slightly numb/detached feeling I recall from the last time? Have you noticed a difference in the side effects this time at all?

4. How long is it recommended that you stay on olanzapine as a preventative measure?

5. How did you cope with the demands of breast feeding while on olanzapine particlularly the night feeds in the early days?

Sorry to bombard you with questions but as you say there are some parallels with my situations any insight you can offer me would be much appreciated. It would be helpful for you to forward the information you received from the breast feeding network. Is there a private message facility on here to exchange emails?

Many thanks and best wishes

postpartumproblems profile image
postpartumproblems

Hi Cupar. Of course I dont mind answering your questions. You are correct in that our stories do sound very similar.

I too was on 20mg olanzapine last time and remember the zonked feeling. I dont have that this time. To answer your questions-

1) I started immediately agree birth, or the night of birth. Baby was born at 01.00am and that night I took first tablet.

2) I did sleep well after birth which I know I did not after my daughter was born.

3) I do have some side effects, I feel hungry more and this was even more noticeable when my dose was upped to 7.5mg. I am now back at 5mg. The hunger worries me as I gained almost 4 stones last time on 20mg olanzapine.

4) As a preventative I've been told between 8 weeks post birth and around 4months. Baby is now 9 weeks and we have decreased my dose down from the 7.5mg it was upped to, to 5mg. I'm hoping this will be gradually reduced soon. My CPN and general consultant have email and phone contact with the consultant who dealt with me at the MBU

5)breastfeeding had been difficult this time through no fault of the tablets. I think I'd be just as zonked without them to be honest! Night feeds have been frequent but I coped!

There is a private message facility so I will copy and paste the info I received. Obviously it's up to you what you decide but we have had no side effects as milk transfer dose is greatly reduced and I was told by both consultants and the BFN that even a 20mg dose would be considered safe for baby. I just wish I knew last time but I wasn't mentally capable of making that choice. Will try send the info tonight, baby dependant!

Hope that helps a little and feel free to ask anything else.

Cupar05 profile image
Cupar05 in reply to postpartumproblems

Hello again

Thanks so much for your quick response which is much appreciated. That's all very useful.

I also meant to ask whether you stayed in hospital for a longer post natal stay or given that you were taking the medication did you opt to go home sooner? I had initially thought I would like to have a longer stay on the postnatal ward to be monitored but both my CPN and the community midwives have raised concerns about the level of support that would be available with night feeds and that I might be better off being at home with the support of my family instead. Also once you were home what sort of professional support/ monitoring did you have from midwives, CPNs etc?

Thanks again

HopeafterPP profile image
HopeafterPPVolunteer

Hi Cupar05,

Sorry for the delayed response to your reply - hope you had a great Christmas and Happy New Year to you!

I am really glad to have helped in some way sharing the detail I did (you deserve a medal for wading through such a lengthy reply from me). And thank you for your understanding about the decisions I made with my second pregnancy.

What a great idea to hire a Doula! Having the same person with you in pregnancy, at the birth and a few weeks afterwards is sure to alleviate any undue stress or trauma. Sounds like you are very well prepared, which is half the battle won against stress.

In answer to your question about Dr Jones, it's definitely worthwhile asking if he would give you a consultation over the phone. You may be able to answer some questions before hand via email to make the phone call easier?? I think my consultation took about an hour, maybe more, but we were holidaying in Swansea so met with him in Cardiff while we were in Wales.

Like you say it's definitely worth pursuing, and I would say advice over the phone would be better than not at all if you couldn't travel. Even before your Dr makes the referral you could email to find out what is possible without having to travel to Cardiff.

Hope all is going well with the pregnancy,

Take care,

N x

Cupar05 profile image
Cupar05 in reply to HopeafterPP

Hi HopeafterPP

Happy New year to you too!

Thanks again for your advice which really helped me to see things more clearly. I had a useful meeting with the psychiatrist today and have opted to take a low dose of olanzapine immediately after the birth. I think this should hopefully give me the best chance of staying well. Things seems to be coming together better in terms of a care plan too and I am less worried than I was before so hopefully I can now focus on enjoying the rest of this pregnancy!

Thanks again

HopeafterPP profile image
HopeafterPPVolunteer in reply to Cupar05

Hi, sorry I have only just seen your reply!

So glad everything on this thread has helped you. And it is fantastic news that you had a good meeting with the psychiatrist. What a relief to have made a decision and firm up the care plan, with everything falling into place.

Good to hear you feel less worried. Lots of positive reasons to believe everything will be different for you this time round.

Yes, I hope you can enjoy the rest of the pregnancy now and the anticipation of becoming a family of 4. I imagine your son will feel the excitement of meeting his new baby brother or sister as your belly grows and grows! I found introducing my eldest (who was 2 1/2 at the time) to his new baby brother to be one of the proudest and most precious moments I've had. It was made all the more poignant because I felt well and like myself, worlds apart from how I felt hours after my first birth.

Take care and I look forward to hearing how things go. N x

postpartumproblems profile image
postpartumproblems

Hi Cupar,

I too initially thought a longer stay may help but decided against it as my husband is better equipped to help me at night and also to recognise symptoms appearing. In the end I was in for 3 nights due to the time baby was born and also the birth I had ( I had a post partum haemmorhage and lost over 2 litres of blood and required a blood transfusion)

The trigger points for PPP recurring are day 3,5 and 7 so visits were arranged for these days by either CPN or the intensive home treatment team as one of these days fell on a Sunday. They had all. Even made aware of my history and in fact the gentleman that came out from IHTT rembered me from 3years previous.

I now have weekly or fortnightly visits from my CPN and also see the health visitor monthly still.

The be thing I do not like is that all the decisions re my meds are made via email between the general consultant and the perinatal specialist. I would rather see him directly as he was so good but unfortunately that is a postcode lottery even though I stay ten minutes from the hospital. Hope this helps again. Did you get the MSG regarding breastfeeding?

Cupar05 profile image
Cupar05 in reply to postpartumproblems

Hi ppproblems

Thanks again for replying so quickly. Sorry to hear about the complications you had after the birth which must have been an extra worry on top of everything else you were having to deal with.

It's reassuring to hear that you had a good support package at home and I think your point about your husband being the best person both for practical help at night and to recognise any symptoms occurring is very true.

I met with the general consultant psychiatrist today and have reached the decision to take a low dose of olanzapine immediately after the birth. I am very grateful to you for all the information you have provided as it has definitely helped me to reach a decision on this.

We are also to have a group meeting with the psychiatrist, CPN, community midwives etc at week 32 to discuss and finalise my care plan so I am feeling a lot more confident about things.

I hope you are able to finish with the medication once you feel ready. It must be frustrating that you cannot have direct discussions with the perinatal specialist about this. This is exactly my experience too that everything has to go through the general psych and then be filtered back to me and it is very disappointing not to be able to have direct contact with them.

Thanks also for the info you sent from the breast feeding network. The email had gone into my junk mail but have now found it so will take a look.

Thanks again for all your help.

Naomi_at_app profile image
Naomi_at_appVolunteer

Hi Cupar

Apologies it's taken me a while to realise this thread is still very much active! To answer your (and HopeafterPP) questions about 'watch & wait' Olanzapine in our experience:

- I had an option of 5mg to 7.5mg as a starting dose. In the end opted for 7.5mg with telephone advice from the Crisis Team. It sorted my sleep out straight away.99+++

- The initial symptoms I noticed were sleep beginning to get very light, feeling high energy, feeling 'spiritual' again and writing loads of stuff about the biopsychosocial model of psychosis and how it might apply to PP.

- Just before deciding to start Olanzapine I had one rather horrible night with dream-recurrence of some of the very visual delusions from 7 years ago. * *I would say we did have extenuating circumstances however, as unfortunately baby #2 was rushed into intensive care at 7 days old

- I stayed on 7.5mg for about 3 months with not too many sleepy side-effects and only a little weight gain

- I must admit that I do question whether if I'd just taken the antipsychotic immediately after birth, would I have had the depression later? (Started after about 4 months) but I guess I will never know the answer to this for sure.

Really interested to hear from postpartumproblems that there is good advice out there from consultants and BFN for being able to continue breastfeeding due to low transference of Olanzapine. I will mention to our local perinatal psych! You may also have a specialist pharmacist service at your local hospital who you could talk to.

Cupar05 profile image
Cupar05 in reply to Naomi_at_app

Hi Naomi

Many thanks for this additional info which is very useful. I have opted to take olanzapine as a preventative measure after the birth and feel relieved to have reached a decision.

It has been so useful posting on this forum. It really is such a valuable source of support when dealing with such a horrible illness and the many issues that can arise afterwards.

HopeafterPP profile image
HopeafterPPVolunteer in reply to Naomi_at_app

Hi Naomi,

Thanks for writing this down. Knowing in detail what it is like to "watch and wait" will be really helpful if I ever get faced with making decisions about a 3rd pregnancy (very unlikely for me too!) and for others considering the option.

Interestingly, one of the reasons we increased the Quietiapine after the birth (I was already taking it from week 33) was because I could not fall asleep at all the night after giving birth but had what I would call "dream-like" racing thoughts and flashbacks to the things that happened in the PP after my first. Later when my son was rushed to Kings for surgery (day 2), I too had semi-conscious dreams involving the delusions I'd had while psychotic. I was sure the stress would send me over the edge but the medication kept me well.

Thanks again, N x

Naomi_at_app profile image
Naomi_at_appVolunteer

That's great news Cupar - I must admit, if we were ever to have a 3rd pregnancy (v unlikely!) I think I would choose the immediately after birth option too.

Positive thoughts going out to you for the rest of your pregnancy, and glad PPTalk has been of help!

HopeafterPP profile image
HopeafterPPVolunteer

Hi Cupra,

Just wanted to let you know I've replied up above to you - I find it tricky to keep track the way these threads are laid out!

So glad things are all coming together for you,

N x

boat1 profile image
boat1

Do not wait and see. I tuk quetiapine low dose straight after just short term. This helped to rest and sleep. Plan an epidural. This helps immensely and help with night feeds at least for few weeks. I tuk lithium also and avoided a relapse. This time I'm considering lithium in last few weeks of preg to reduce post parting risk.

NicJK profile image
NicJK

Hi Cupar05 , I know this is a very old post but just wondering - did you end up going on Olanzapine before/after giving birth? If so, did it effect your bonding with your newborn? Thanks so much

JosephineFay profile image
JosephineFay

Hello I see that this message was originally written 11 years ago and I'm putting an answer now. I just wanted to know how you got on with your second child in the end and how things were if you still use this forum.

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