Cannot admit how I feel

[GettinDesperate]

There is something very wrong with my child. I wish I was being dramatic but even having spoken to my support worker from the perinatal mental health team, as well as my health visiting services, no one has come across a description of behaviour like it.

My partner has just come upstairs bereft and speechless following 45 minutes of sporadic crying episodes (which is now over 1.5 hours). I told him half of what I feel, that I could blow my own brains out, but I can't admit the other half. I can't admit it what goes through my head to anybody because it's unthinkable, but I can feel myself shutting off like you would during intense trauma. There's no other way I can deal with it.

My daughter is 18 months old. She has never, and I mean never, slept longer than 3.5 hours without intervention. She wakes up crying and screaming anywhere up to 15 times a night. Last night she spent an two hours going 1-2 minutes of being settled, before fidgeting and crying for a further 5 minutes, and so on. This is normal and has been ongoing for a year on the back of what I was led to believe were "normal disturbances" for the six months prior. Believe me when I say we've tried everything, even things we have not been given direct instruction to do (I am being purposely vague so as not to incriminate myself), and nothing makes a difference.

Her development is being impacted. Her daytime behaviour is being impacted (inconsolable meltdowns). I have just had to go back to work after being off sick as a direct result of both the physiological impact of the sleep deprivation as well as the deep depression having to deal with such a soul draining situation has caused because my job is being threatened otherwise, so I'm now dealing with shift work on top. We have been waiting for an "urgent" referral to paediatrics for six months after we spent six months buying every book and hiring every professional that might have the solution.

I have reached a point of feeling scared. The inclinations I can feel bubbling up inside of me that I'm constantly having to surpress are becoming unbearable, to the point that anything feels like it would be better than this.

I don't even know why I'm posting this, I'm not looking for answers anymore because I genuinely do not think one could be suggested that I haven't already tried. I just need some moral support I think because my partner has none left to give either.

Have you definitely been referred? It seems such a long wait for something like this. A couple of years ago DH thought he'd been referred for something (much less distressing) and didn't hear anything for ages. I made him follow it up and it turned out no-one had done the paperwork. Things happened relatively quickly after that was done.
I very much hope you will get an appointment soon and it will be helpful.

Stop breastfeeding

Thank you, I have tried it out of desperation and it doesn't make a difference.

Tonight I've been up within 30 minutes of her falling asleep. It's just relentless.

It's just the worst, I'm sure we have PTSD from what we went through with DD3 and my 18 months she was much improved.

Your stress and alert levels are through the roof constantly.

You are not mad or bad or horrible to have those thoughts or feelings

So she was in a next to me for the first six months, at which point we moved her into her own room as we were wondering if my partner was disturbing her. From here we gradually resorted all the way to the most extreme solutions (cry it out), and when that seemed to escalate things further, we began co-sleeping. That's been ongoing for six months or so now, however we are at a point now where even me being there doesn't settle her back down quickly anymore.

That sounds absolutely shit op. I'm so sorry you're going through this. It sounds awful.

Unfortunately yes, I've chased it up and just had it reiterated "it was marked urgent so hopefully it won't be too much longer".

We already night weaned, it made no difference.

The worst part is the guilt for the resentment I feel in the moment, only to look at her face the next day and see a little human being who wants nothing more in this world than for me to love her. And I do, more than anything, but then to know I'm capable of feeling certain ways just breaks my heart for her.

I was you almost thirty years ago. My heart went out to you reading your post. Unless they've been through it, no one has any idea how hard it is to endure. It's literally torture.

DH had weak muscles going into his stomach and had rather impressive projective vomiting skills but apart from that no one had any idea.
He never napped during the day from being very young and didn't sleep more than an hour until he was three months. I don't want to say how old he was the first time he slept all night but he was at school.
I kept him in our room because getting up so often would have been even worse.
I don't know if it's relevant but he was eventually diagnosed with ADHD, which again wasn't easy but he has turned into an amazing young man. He recently said he had the best childhood ever.
We also eventually went on to have another child almost ten years later after vowing never again. I was prepared for the worst but he slept three hours from birth and through the night at four months. I say this to show there is light at the end of the tunnel and long term it didn't affect our relationship. I hope you find an answer soon.

i know you say you stopped breast feeding and it makes no difference but that’s to her. It must be draining on top of this to have to ‘give’ more of yourself in this way on top of being so exhausted.

my dc was like this but he was generally ok in the day but no naps were had essentially since he was out of the newborn phase because he’d flip out at them too. But at night he was a banshee. And what you say about her not being safe to tantrum was what mine was like. Literally wouldn’t stop screaming. Wouldn’t tire out. Would screech the loudest most violent screech about 80% of the night. It was unlike anything most people have seen. And everyone would say yeah do this do that - until they witnessed it themselves and they’d just be horrified. It was actually scary. Like possession. Stiff like a board with a blood curdling scream. Scratching and lashing out sometimes and just unable to get through to them. My dp and I would just be in despair. The nursery staff were left speechless and visibly upset after dc went into one of these fits of rage at nap time - they’ve been in childcare for decades and never seen anything like it so I totally know what you’re saying. And it’s SO annoying when people think you should just do cry it out or whatever.

we we’re recommended drowsy anti-histamine but it didn’t literally nothing.

dc did eventually stop the screaming and can sleep now - still doesn’t need sleep the way other kids do but now they have language it is just sooo much easier (very late to walk and talk - I think a lot to do with lack of sleep but who knows?)

I missed whether you’ve put her back in bed with you? Will she watch screens? In the end, after two years of just true exhaustion we’d just let dc sit in bed in between us and watch something chilled like Something Special so we could sleep. He wasn’t engaged before that point developmentally but as soon as he got the bug for screens it helped a lot. You just need sleep. Don’t try to win the battle. Don’t try to crack the nut.

and if you’re feeling this mentally impacted as you say, don’t try to entertain during the day for the next few days - just screen time if she’s at an age where it will keep her attention and any helping hands like grandparents to play with her, if you have them.. you have to look after yourself and just give yourself a break. Don’t bother with mum guilt. Just totally do whatever makes your life easy. you’ll get through it just keep going and take care.

I really appreciate the long messages of experience/support @Cumbrianlife @Alopeciabop . You're both right in that it's something that needs to be witnessed/experienced to be believed/truly understood. Even my partner, although he knows what she is like at night, is only just beginning to understand what it's like in the day too as he previously used to say it must be something I was doing wrong.

Has she been checked for adenoids, tonsil or ear infections, and glue ear, and sleep apnea? You are describing exactly how my eldest was for the first 3 years of his life from 8 months onwards, and exactly how I felt. He was eventually diagnosed with infected adenoids, allergic rhinitis, glue ear from a long gone silent ear infection, and sleep apnea. ENT referral, not just gp to check these.

She's not yet had her adenoids or middle ears checked due to this all being something that has to come through paeds. No signs at least of enlarged adenoids, and her hearing has been checked (not via ENT) which was fine. She's never had a tonsil or ear infection. From my months of insomnia, I'm 99% confident she doesn't have sleep apnoea (and again has no hand in hand symptoms of such). I have a list of things I will bring up whenever we get the appointment through, some of these being on there.

I do think you have to almost demand help now from GP. I work with a lovely lad who is hard work at times due to quite high level ADHD plus painful hyper mobility which means he can be very emotional & upset at times. I can imagine he was hard work as a baby. My own DC1 has adhd and was a nightmare baby

I also have a friend whose DS had silent reflux. That's seriously hideous to deal with as he screamed constantly

My son's hearing was fine with glue ear, ent consultant was shocked his hearing or speech development hadn't suffered but yet he did have glue ear in both ears. I demanded an ENT consultant referral from gp, gp said his ears were "fine", hadn't a clue. Our son never had any obvious sign of ear, throat, tonsil or adenoids infections either, now I know that waking screaming constantly, chronic exhaustion/clinginess/"bad" behaviour are huge signs of it. We didn't realise he had sleep apnea, it was imperceptible, but happening.

We had very similar with DS. By 18 months, the longest he'd ever sleep at night was 1-2 hours before we'd need for resettle him. All night long, every night. In the end, melatonin was the only thing that work. It was like a miracle.

I am so sorry OP I suffered a lot with sleep deprivation to the point of going to A+E for me (rather than for my child). I say the following with full sympathy and with love. You mention being on a heavy dose of ADs. This is going into your daughter via breastfeeding. ADs can cause a wide range of physical and mental side effects and your daughter is likely suffering from these (on top of whatever the diagnosis turns out to be). These can include night terrors and insomnia and nightmares, stomach upset and depression. Have you been on these since she was born?

As others have said, I think you need to stop breastfeeding. At the least, this way you will rule out the ADs in her bloodstream as a possible link.

Doctors will say that a brand of ADs is safe while breastfeeding but I’m extremely sceptical about the data.

Can you also try co sleeping without partner just to see if she sleeps better.

sending you so much love and please as others have said, talk to your perinatal team about how you are feeling . Maybe the ADs dose is not right for you. They can make you feel worse as well as better. on top of the sleep deprivation you don’t want medication that’s working against you.

sorry if you have already covered any of this. Sending you so much love - you matter too and you will get through this xxx

I had high hopes too but sadly it doesn't nothing for maintaining sleep for her (and getting to sleep has rarely been an issue).

Sorry I sent that too quickly . I said “likely” but I meant “possibly”. I have no idea if it’s likely that your daughter is experiencing any of this, but it is possible. Just to clarify my intention X

Thank you, and again apologies that anyone else can relate.

I've only been on them for around 3 months now, I felt I had no choice else I was seeming uncooperative as I'd been offered multiple times prior and declined, plus I hit a point of needing to do something that might help me cope. Her inconsolable daytime meltdowns began prior to being on ADs, the frequency of disturbances hasn't really changed although they can be more prolonged now. She'd still wake up screaming/crying before but once I settled her, that was it till the next time. Whereas now, she can take up to an hour to resettle fully and be intermittently disturbed every 2-5 minutes in that time.

Could your family/friends at least take her during the day on a day you aren't working? You could get a decent nap, and also baby will get more familiar with them, which may allow them to be able to settle her better with the hope they could progress to having her overnight. Your baby knowing that they can rely on grandma/auntie etc for comfort is important for you to be able to get a break on the horizon. I know it's a drop in the ocean.

Even if family do not feel confident taking her on their own overnight, could one of them support your partner at your house for a couple of nights, whilst you sleep elsewhere and get some shut eye? That would enable one of you to be with baby and the other make some moves towards being semi-functional, whilst also building that bonding between baby and the supporting family member. Then do a swap and have a different family member supporting you for a couple of nights whilst your partner gets a couple of nights of sleep elsewhere. It's not ideal for any of you, including your family members, but it sounds like the three of you - baby, you, your partner - are all in a cycle of being overtired and exhausted. A couple of nights won't resolve your overall sleep debt, but you may at least get some dregs into your cup to keep you going until the paed referral comes through.

The reality is that you cannot carry on like this. Do your family know how you are feeling? The reality is that if both of you become so exhausted and ill that you cannot continue to look after her, they probably would step up - so they need to know that you need them to right now.

As well as ENT, ask paeds about any other things (neuro, cardio, respiratory) - just to rule out anything more serious that is waking her up/making her brain not wanting to let her fall asleep fully.

She sounds a lot like my daughter. She is now 3 and still wakes frequently through the night. She cries and whimpers in her sleep for about half an hour before she wakes up too which disturbs my sleep too.
She has silent reflux that is only partially controlled by medication and she is on a lot of high dose medication. Without it on its highest doses she wakes every half hour.
She has over 20 food allergies and is so allergic to soya that she can't have chicken or turkey that has been fed soya. So we can only have chicken if it specifies how it is cooked.
It took a really long time to figure out her allergies as they are delayed so can't be tested for. We had to keep a lot of food diaries to get to the bottom of them
If you think it might be reflux do get it looked at and push for help to get it undercontrol. The uncontrolled reflux is damaging my daughters teeth as baby teeth are susceptible to acid erosion

How's things today?