Action on Postpartum Psychosis
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Will it ever end ?

My daughter is suffering terribly with postpartum psychosis, after the birth of her second son in Jan. Both children have Been living with us since the baby was eight weeks old. She was deemed too unwell to be admitted to the mother and baby unit so has stayed at home . Her medication is not correct and has not stabilised her and is not monitored often enough, so she is currently suicidal. We are exhausted and just need to know there is light at the end of this bleak tunnel ! How can we help her ? she spends hours alone and as I have the baby I am unable to be with her. We are so worried about her it’s awful and we are all are wits end. Has anyone come through this ?

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Hello Jesse3

I'm so glad you found the forum where there will be lots of help and advice with shared experiences. So sorry to hear your daughter is so unwell. You must be exhausted looking after your grandchildren and trying to monitor your daughter's moods.

I had PP twice many years ago now and can honestly say that there is light at the end of the dark tunnel your daughter is in at the moment. There are PP Insider Guides "Recovery after Postpartum Psychosis" at app-network.org/what-is-pp/... which might be helpful for you to read and convey to your daughter as it's must be very difficult for her to concentrate on anything at this early stage.

It's such a shame that she is deemed to be too unwell for the MBU. Will this decision be reviewed as she could then receive specialist care? If she is suicidal it's not good for her to spend time alone as her thoughts might build and overwhelm her. I was suicidal and treated under general psychiatric care. Is it possible your daughter could be admitted to a psychiatric unit for treatment? It must be so worrying for you. Thankfully with good medical care and treatment I eventually fully recovered but it did take time and it's toll on my family.

Please take care of yourself too as this must be such a stressful time not knowing where to turn. There will be other mums here with good advice so please don't despair. Your daughter will be well again in her own time but she does need access to proper care and professional attention. Is her GP able to signpost her to the mental health team for review?

If you are very worried, there are crisis teams in the A & E of most hospitals to offer advice and support you and your family. So you might have to wait but this might be an option? I'm so sorry you're in the middle of such a dilemma. Take care and please keep writing here if it helps you.

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Hi Jesse3

I'm so sorry to hear about your daughter. It sounds like she, and you all, have had such an awful time, and that her professional support isn't as good as it could be. You must be so exhausted and worried. Just to give you hope, women really do recover, and come through this, she does just need to get the right support.

Sorry for all the questions I'm about to ask, but are you in the UK? I wondered if she is being supported by a specialist perinatal mental health team, and under a perinatal psychiatrist, who specialise in supporting mum's who are ill after the birth of their baby? I know there is not perinatal teams yet across all the country so it may be that there is not a team in your area?

If she isn't being treated by a perinatal psychiatrist you could ask her mental health team if they can refer her for specialist support through the second opinion psychiatry service, information is on our website. Dr Ian Jones is one of the leading academics and perinatal psychiatrists on postpartum psychosis, bipolar and mood disorder. The second opinion psychiatry service is free to access, for your daughter and her health authority, and do emphasise this is you do want to ask them to refer your daughter. He is specialised in different medication and treatment for PP, particularly if recovery is slow. app-network.org/what-is-pp/...

I do hope this is helpful, and that you will be able to access it. Do get in touch with any other questions, or just to get support for yourself from ourselves.

Take care Jesse, Ellie

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Dear Jesse3

Thank you for reaching out on the forum here, and a big welcome to you. I can’t add much to the wonderful advice given by Lilybeth and Ellie, but wanted to tell you how wonderfully supportive you are being - for your daughter and her babies. If you are in the UK, then I would suggest (if you can bear it) to push back on the medical team and ask for a second opinion. If your daughter is deemed too unwell for an MBU place then I would’ve thought she is definitely too unwell to be treated at home. It is a really strange decision and one that places a huge burden on her family members and loved ones, just to keep her safe. I’m not surprised you are so worried. If the Gp or community mental health team cannot help arrange a second opinion then an A&E liaison psychiatrist might work. Explain the stress you are under in having to look after the baby, and not be with your daughter. And the benefits of having Mum and baby together, under 24hour care.

I hope this helps, and I’m sending you and your family all my best wishes,

Kat x

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Hello Jesse3,

Firstly, I’m not sure how much I can add to the replies of the lovely ladies, but I will offer my experience and hope that may help you in some way.

Secondly, I am so sorry you and your family are going through this at the moment and for what probably seems like a very long time.

I can say that things will get better for you and your family with the right treatment and support for your daughter.

It sounds like you are doing so much already to help, which is just amazing. Looking after 2 little ones so she can recover and reaching out to the APP community!

I do agree with the comments from the ladies on here in regards to her treatment so far. It is so important to get the right treatment quickly.

I was poorly in 2015 and it took me about 10 months to finally get the treatment I needed (due to the lack of perinatal specialists in my area). We had to push very hard to get treatment and to be seen by a specialist for a second opinion (Professor Ian Jones, in Cardiff).

I was lucky to have my husband who pushed and pushed and wouldn’t really take no for an answer! I seemed to have lovely Health professionals looking after me, but the treatment wasn’t right as they didn’t really have the specialist knowledge that was needed to help me get better.

I probably should have been in a mother and baby unit, but myself, my partner and family did not know at the time that this could have helped me to get better more quickly. However, I appreciate that things might be different for your daughter and this would need to be decided between the health professionals and yourselves.

Is there anyone that can be with your daughter? Or is there anyone that can give yourself a break?

Please feel free to ask any questions and if you want to know anymore about my experience, please just ask.

Please know that things will get better. It may not seem like it now, but there are many ladies and family members on this forum that are proof of that.

Take care and thinking of you,

Sally xx

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Hi Jesse3

I am so sorry to hear about your poor daughter this must be so very hard for all of you .

Have you tried speaking to her G.P and saying how worried you are for her and how poorly she is ? I can’t believe she is not getting more help makes me so angry as this is what I encountered when I first got poorly in the end it was the police who took me to hospital this was after three G.P visits and a trip to A&E .

When I left hospital I used to go to this day care place and then a care worker would visit me each evening I can’t understand why she is not getting the support she needs right now .

I had PP in 2016 and now I am fully recovered there is light at the end of the tunnel but it does take along time to get better from it .

I hope that she can get the help she needs ASAP . Love and Best Wishes xxxx

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Dear Jesse3,

What a huge contribution you are already making by your care of the little grandchildren which understandably must be exhausting and with the concern for your daughter added to that .bless you .

I suggest you question the wisdom of your daughter being at home often alone when she is “ too ill for the MBU” ? It seems she needs high quality professional care right now . The other ladies ‘ replies contain

Very good advice and I will reiterate that it will be helpful to make contact with , if necessary several different people and organisations eg the local CMHT , the GP, the hospital MBU to find who to address your concerns to , and if your daughter has a partner ? Husband? to discuss an emergency plan in the meantime in which she might have to be admitted if things get worse . If she e g went to a general hospital they have facility normally to refer patients on for psychiatric care . PPP is very scary for the sufferers and families but she will recover and come out of this phase but it can be slow . Not all medications suit everyone as I’m sure you know but there are excellent ones which will help her recover .

If you don’t get satisfactory help from your enquiries, I suggest you continue to make contacts ( and it’s good to put in writing your concerns to say the head of the local MBU , if there’s one ) . You could if you think appropriate ask the GP for a mental health assessment which he can start in order to check the suicidal ideation as that must be a huge concern ? Your daughter may not welcome your help at this time but when she has recovered I’m sure she will appreciate your v significant help.She WILL recover !!

Best of luck Jessie . Take care of yourself ; that’s also very important! ..

Denizt x

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So sorry you and your family are going through this at the moment. The whole point of an MBU is specialist round the clock care for mum and baby when mother is too unwell to be at home. Very surprised about that decision. Have they suggested she gets care in an adult mental health ward without baby for a bit? What are her main symptoms at the moment? What I’ve learnt is too have to be very strong and shout for the help you need. Part of the reason for being admitted to hospital under section 2 is to have 28 days to assess meds and try and get on the right ones. Does she enjoy spending time with the baby? Does she definitely have psychosis and not depression? It will get better but you might need to keep fighting hard for what she needs. Doesn’t sound like being at home is working. Take care xx

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How are things developing dear Jesse3?

I am so pleased you found 'us mums'...whose experiences of care and treatment are very unique and often depended on where one is located and how switched on NHS provisions are with regards to peri and post natal care for mums with mental health issues, and especially PPP. I hope the advise and support given above by all those wonderful mums, maybe suitable for you.

- Who is with your daughter at the moment?

In my case I had a crisis team before and after hospital stay, then a health visitor for 2 years, Psychiatrist support for one year, because of medication. A care coordinator, a support worker, care plan and my partner's family support, therapy etc...

I was so poorly I could not be left on my own and my partner had to be my full time carer, but recovery was only possible, because of being in my own sanctuary/home and together with my baby.

There is light at the end of all that suffering...I was off my medication after one year.

We are a happy family unity. My son is 8 yrs old now.

Look after yourself, I do hope so much that your daughter will get help...

x

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In addition I ought to say that in my case there was no availability of an MBU. I was in the South West and there was talks of Manchester. x

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Hi There.

I myself had PPP twice after both children and once after miscarriage. I was misdiagnosed as having PPP and subsequently sued the health authority for misdiagnosis and was awarded £25000.00. I have since recovered sufficiently to go on and receive a Certificate of Higher Education with The Open University. I still have bleak days almost 30 years later but I consider myself to be recovered. I am going for an interview on Tuesday to volunteer at a local crisis house to assist people with mental health problems. Please be assured that things will get better and your daughter will recover. Things will not always seem so bleak. I have read text books on PPP and they say that the condition will only last a certain amount of time and it is not a lifelong condition. I sympathise with what your daughter is going through and she probably feels that no-one understands, but we on this forum have all been there, so be encouraged that there is indeed light at the end of the tunnel. Why don't you encourage her to colour in adult colouring books, listen to music, have a nice relaxing bubble bath, have gentle exercise, go for a walk to clear her head, or simply take a nap during the day. I find meditation is a great help for me. Is your daughter religious at all? If she is, why not encourage her to read the Bible or join the local church. Anything that takes her mind off the dark place she is in now has get to be better than nothing.

Please take care. Best Wishes X

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Hello Jesse,

I am so very sorry that you are suffering such a terrible time.

I am an APP Granny Volunteer, that is I did not experience Postpartum Psychosis myself but my daughter did, after having her first baby 19 months ago. I can so relate to and understand your worry and concern.

It is such a shock and trauma and difficult to see your daughter suffer.

You ask what can you do, it seems that you are doing all that you can do and it is no wonder that you are exhausted. My daughter and her baby are now doing well, so yes there is an end to this. I wonder if you along with your daughter could ask again about a Mother and Baby Unit place.

You have had some wonderful replies from brave Mums, little I can add except to say I am so glad that you have found Action Postpartum Psychosis, I found such help and thoughtful understanding from them for both myself and daughter.

Take care of yourself.

Wishing your daughter well best wishes to her, you and family.

Judith x

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Hello Jesse3

I hope you have found the replies here helpful. Is your daughter going to be reviewed so that she might be eligible for a place in the MBU? It must be so difficult for you to see your daughter in such distress.

Is she having regular visits from her GP as he has a duty of care? During my first PP I stayed for a while with my parents and their GP would not visit me as I was not his patient and my GP would not visit as I was out of his area! I was such a problem for my husband and family at that time; having suicidal thoughts and delusion; hearing a commanding voice. I was watched 24/7 by my family so I can understand how stressful this must be for you. I went downhill very quickly and was eventually sectioned into mixed general psychiatric care via A & E.

With my second PP I was mainly treated at home as my first son was six years old by then. I had similar delusions and suicidal ideation and admitted to hospital in times of crisis for treatment. I was closely monitored at home with professionals visiting to adjust medication, a CPN for support, Health Visitor and Social Services. Does your daughter have access to such a care team?

At the moment your daughter is in a very frightening place where everything makes sense to her but no one else. You are doing all you can to support your daughter and grandchildren. If your daughter's thoughts and behaviour become too much for you to cope with, there is a mental health crisis team in most A & E's as mentioned earlier. It might be difficult to coax your daughter to go though as when I was so ill my safe place was my bed.

I hope it won't be too long before your daughter receives specialist care which is so vital to recovery. In the meantime, there is a blog "PP Soup" with info and clips which you might find helpful at ppsoup.com although I appreciate it's hands-on help you need. It must be exhausting for you but with good medical help as soon as possible your daughter will recover. Take care .... you are doing all you can.

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Dear Jesse3,

we are thinking of you. Hope your daughter will be in a better place, soon. I do hope she will get appropriate support...I hope there are given options of care.

Look after yourself.

x

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Hello Jesse3

I hope your daughter is now receiving the help she needs and things are not too stressful for you, although you must be exhausted. We have all come through this frightening illness, as your daughter will, with good medical care and support. Take care.

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Hello Jesse3

I was so sad to read your reply to Kit-kat75 and how stressful it is for your without little support. What a great mother you are to your daughter who is still suffering from this awful illness and as a grandmother too. It must be heartbreaking to watch your grandsons suffering without your daughter but with good medical care she will fully recover.

If I can give you a glimmer of hope, I had PP twice six years apart. My husband and family had very little support while I was recovering (there were no mother and baby units then) and I was in and out of various psychiatric units. They cared for my sons when I couldn't and it's not until years later that I realised how much they had coped with. Unfortunately, during recovery from my second PP my husband had a breakdown which turned the tables as I was then visiting him in hospital.

My first son was six at the time his brother was born and he must have witnessed the effects of my illness and enduring depression which lasted 12 months or more. I did worry about the effect this would have on my sons. I carried this unfounded guilt all through their school years and beyond but thankfully they now have families of their own, professional careers and I have treasured grandchildren, as well as daughters-in-law.

I know this probably won't mean a lot as you are in such despair about your daughter and grandsons but there is hope although there is so much for you to cope with at the moment. Perhaps Rethink Mental Illness who offer advice and support for carers at rethink.org (under services and groups) might be able to help. Take very good care of yourself .... we are all here for you.

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I was under a perinatal team before and after birth as I had had mental health problems in the past but really didn’t expect it to happen again. I was living in London at the time that had good access to perinatal services fortunately. Is she under a perinatal team at the moment? Not sure why she is not well enough for mbu as surely that is the whole point of an mbu to get better and be with the baby, there is definitely light at the end of the tunnel, it’s a long uphill struggle but she will get there, especially having such great support from her family. Mine was caught early so I managed to stay out of hospital with just medication but was severely depressed and didn’t get out much and struggled to function. I would say it took me about 9 months for the depression to start lifting. I had someone come out to me once a week from a charity called home start as I didn’t live near my family and they were a godsend and helped me to get out and about. It must be so hard for you. She just needs the right medication and support and she will make a full recovery xxxx

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Hello Jesse3

I'm sure you must be very busy caring for your daughter and grandsons. I wondered if your daughter has now been given a place in the MBU or whether there is more support in place since you replied to Kit-kat75 about the living hell you are experiencing?

Please take care of yourself at such a traumatic time in your daughter's life. Hopefully her medication has been reviewed and in time she will slowly recover. We are all thinking of you.

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