My sister has been referred to ect - but the waiting time is 2 weeks

[Chaource]

Hi all,Thank you so much for your kind messages with lots of really useful ℹ️!

The Dr has said my sister will be referred for ect - which I think is a great, as I felt like previous doctors weren't taking her (severe) risk seriously as she previously was getting better. But the waiting time is 2 weeks, and I'm worried as she is barely sleeping and has strong suicidal thoughts (although she is in hospital).

Just wondering if you think this waiting time is normal? Any pointers as to what to ask the doctor - e.g. how to make things manageable for her during this waiting time?

An endocrinologist also said she likely needs supplements - so not sure whether to push for this (as then they will likely kick in once/ hopefully when she starts to recover).

I'm not sure if he will consider medication changes in the meantime - is it important to be on the right meds before or are they typically tweaked after the ect treatment? (She is currently on the highest dose of Venlafaxine and they took out the Olanzopene and added another mood stabiliser/anti psychotic).

Ant tips on how to support her after the treatment (maybe I'm getting ahead of myself)!

Thanks all!

[Chaource]

Also just to add, I'm not sure whether to push for a second opinion from Cardiff university now or whether to wait till after the ect treatment? (Her condition is complex and I don't think the doctor understands what medications to give her).

[EquineBeauty in reply to Chaource]

I personally wouldn’t wait. It might take time for Cardiff to get back to you and since you may have to wait around 2 weeks anyway - might as well start the process. Hopefully the ECT can be done sooner. It doesn’t hurt to get another opinion.

As far as an endocrinologist - someone else on here said to get her hormones checked to rule out a physical cause and that sounds like a good idea. Any new treatments you all decide on will always have to go through her overseeing psychiatrist anyway first and foremost. So ultimately they’ll decide what’s best. But right now I would personally gather information and options as much as possible since you’re waiting anyway. Hopefully the new mood stabilizing drugs start to ease her symptoms a bit. She has been unwell for so long it might take awhile.

[Jenny_at_APP Partner]

Hello Chaource,

My name's Jenny, I'm one of the peer support coordinators at APP. I've been catching up on your posts and updates and am so sorry to hear how unwell your twin sister has been.

I experienced PP back in 2012 and fortunately responded well to treatment (antipsychotic medication in my case) and recovered relatively quickly. I know people have such varied experiences when it comes to medication, treatment and length of time to respond and recover. I hope you are finding hope in the replies here on the forum that it is possible to get through this.

I don't have experience of ECT myself but as others have said, it sounds as though it can be a very effective treatment. Waiting 2 weeks must feel like such a long time when you're so worried - I've asked within our team and it sounds like this is probably to be expected due to physical tests that are needed, discussions within the team, ensuring your sister understands everything and then where this will be carried out. It's good that your sister is in hospital and has support around her during this time.

There is some information about ECT on the Royal College of Psychiatrists website that might be helpful to you too - rcpsych.ac.uk/mental-health...

It sounds like you are doing so much to try and understand everything and support your sister as best you can. This may have already been shared with you, but I wonder if anything on our website around supporting someone with PP might be helpful - app-network.org/postpartum-... It may not all feel relevant, but I thought I'd share in case there is anything in there that feels helpful.

Take care of yourself as much as you can, it must be so hard watching someone so close to you go through this. I hope the team supporting your sister are keeping you informed - do keep asking questions as needed to feel updated and reassured. I personally don't think there is any harm asking the team about a second opinion from the service at Cardiff (CUPS) or from another hospital if they need further input and advice about treatment. The team would need to request this from CUPS and I'm not sure how long this might take but asking and having a conversation about whether a second opinion might be helpful / needed might help give you some clarity on their current thinking and anticipated timescales for the current course of treatment they are planning for your sister.

Take good care.

Sending very best wishes,

Jenny x

[Survivedwithcolor]

I’m glad they’re proceeding, and two weeks doesn’t sound that unreasonable to me. This gives you and the doctors time to prepare and consider all the aspects of before and after care.

I am not a physician, but I would be concerned about her not sleeping. Lack of sleep causes so many issues all by itself. My recommendation would be that you address that with the doctors. She needs to be sleeping even if that involves medication. Other things may improve once she is sleeping regularly, possibly changing the need for other medications.

Since she is in the hospital, I assume they know about the suicidality and have suicide precautions in place? If you’re seriously concerned, they may need to increase checks on her or even have someone with her 24/7. If they're doing this, its very unlikely she could go through with anything while in the unit.

Good luck. Please write more about how the ECT treatment goes.

[Lilybeth Volunteer]

Hello Chaource

I’m sure you must be exhausted trying to find support from the professionals for your sister. So please remember to take care of yourself.

Its good that the Dr has agreed to refer your sister for ect although the waiting time is two weeks. I’m not sure if this is a normal waiting time but as Jenny mentioned there is a lot to consider and put in place.

I hope if she has regular reviews in hospital that her care team will realise that she is barely sleeping and perhaps tweak her medication. I have looked at my notes and with the cocktail of medications it seems that a high dose of Amitriptyline 150mg was given to me at night to keep me asleep? Also Stelazine 5mg and Disipal to control hallucinations. Of course some of these medications might have been updated since my episodes so long ago.

That’s a good question to ask about how to make things manageable for your sister during the waiting time. Perhaps she could have help in the daily care of her baby for when she returns home. This might be a distraction from her thoughts and she would be building the bond with her baby?

I think it might be a good idea to ask for a second opinion, which is not going against the care team at the hospital but finding the right response to your sister’s needs?

Being positive, your sister might not need as many ECT sessions as I had. She seems to be talking, albeit about her dark thoughts so she has insight, which I didn’t have. I was very suspicious and didn’t share my thoughts with anyone as it was hard to trust. I think you’re amazing and just being there to listen must mean so much to your sister.

I hope you will have a good rest and sleep. Take care 🌻