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.

@WingedHermes I have questioned some kind of neurodivergence in her, probably mostly because I've wondered whether I have traits of it too. But I feel it's difficult to determine what's not just normal toddlerisms and what's concerning. I've mentioned it to the HV team and they've said if it's not blindly obvious (which I don't think it is), no one will even consider till she's at least over 2.

Sound absolutely hellish, I'm so sorry. To me it sounds like either silent reflux causing her pain or neurodivergence of some sort, though I'm not sure why she'd always be crying when she woke, if that were the case. Can your GP prescribe some strong reflux meds while you wait for the paediatrician? Worth a try, surely?

It's non-dairy (and for clarity, non-soya) yoghurt, I can assure you she hasn't consumed dairy (or soya) since around 10 weeks of age.

As for the darkness, we've tried both pitch black and some light, in case she was waking scared because she couldn't see anything. Neither helped. She's never taken to a lovey, has no particular toy she likes. She sleeps in a legged sleep bag because she can't tolerate any kind of blanket over her. And she predominantly eats berries, which are some of the lowest sugar fruits - her sugar consumption, I would argue, is low compared to many of her peers. As for neurodivergence, as per my last response - difficult to say at this point.

@PurpleOrchid42 We've previously been on Omeprazole and Gavisgon combined, which had no impact other than causing her some constipation. They said previously that they wouldn't prescribe further without paeds input first.

That's a shame as it seems a possible explanation, other than ND. Can you make an appointment with your GP and ask them to contact paeds for advice on anything they might prescribe? Certainly with my kids, when the GP has been unsure, they've contacted paeds and got back to me a few days later with some suggestions.

We had a baby who slept very very little and screamed. Colic they said, after 3 months, still screaming, after 6 months teething, so it went on and on. I remember how little sympathy and help there was. HV wrote in red book 'another lengthy discussion about feeding'. Family thought I was being dramatic.
They didn't say but I could tell. They wanted me to do cc but when I did he made him self sick - they were there and I said never again.

I have CFS now, and I do wonder whether it was 2 years of sleep deprivation and crying. So stressful.

I would say private peadiatrician. Even just one off. They may have seen something similar. Ring around and try and find one who has.

Hassle GP. Wish I had spoken out more. We did get a volunteer to come once a week, but I was so befuddled I was lay awake anxious and wondering if she was an abuser!* Sleep deprivation makes your brain hyper. Even though I loved my baby I used to have disturbed thoughts.

Eventually he did grow out of the distressed crying - but you need help NOW.

DS now 13 and sleeping like a baby asleep next to me as I type. Sleeps excellently now, and is thriving. He did turn out to have dyspraxia, ADD and other stuff. I do wonder if that was a sign of it. Cousin with ASC was same as a baby - absolute wall to wall crying. If you feel like you might hurt her, get her in a safe space and remove yourself. I would often be found by DH out on the hallway stairs in tears, with child in cot in the flat. Desperate times. Ask for an urgent GP appt and take someone with you. Record the crying and how long it goes on. Tell them you are on your knees and need support or else you think your mental/physical health of you and DP is going to mean you can't care for a toddler.

*Volunteer so wasn't, have known her years now and she's the most brilliant woman ever, kindness itself.

OP, you’re being a hero. No one can cope with this. Somehow you have managed for the worst 18 months of your life. Total respect.

Push SS for respite care. It’s really good. Meantime, can grandparents take DD in your home for a night? Then one night a week?

Stop trying so hard. Unlike other posters, I think it’s time to focus on you not DD as the priority. She’s fit. You aren’t.

I know four mothers who battled shit like yours and ended up well & happy with well & happy DCs. They had to have proper breaks from each other for a while to get there, though.

The crying was like nothing normal. I could never stay at mum and baby groups as he wailed the place down. The other mums used to look with pity as I left..again.

He was like a banshee- full on screaming.

So sorry OP - this is hellish. My 3rd child was similar, screaming on waking all the time from 4 months until 4 years. I nearly broke with the lack of sleep. She is on the ASD and ADHD pathway now, she is extremely clever IQ wise but very quick to meltdown but her sleep is a lot better now.

My first child was also bad with going to sleep but I don’t recall the screaming as much but again also diagnosed ASD awaiting ADHD. Turns out DH was the same not sleeping until age 9!

We also have dairy allergy, hyper mobility and poor gut motility in the family too, think it’s all inter linked . It’s a long hard road but it does get easier with time. We co-slept for years. Be kind to yourself this is tough especially now. It will pass eventually but take all the help you can to help you through it. xxx

I was the weekly babysitter for a shrieks-of-a-dying-animal insomniac toddler, not least cos everyone we knew panicked about how unhappy and sick the family was and I was too cowardly to refuse.

Memorable. I fainted from exhaustion once. We were convinced something was very, very wrong with her brain. Wrong. She’s 19, NT and thriving.

I honestly truly feel your pain. The hours I've spent crying willing my DS to just sleep like other children. He was allergic to diary and soya. He also had severe silent reflux. When he was a baby he sometimes would only sleep for half hour periods and then wake and cry and cry. It wasn't until he received medication things Improved. He's now 7 and I'm not going to lie his sleep still isn't the best but I'm not sleep deprived and still manage a kine of decent nights sleep

Both my DS had reflux - one silent and one happy chucker. Both ended up dairy free eventually, but we discovered with ds1 that the more of a food he had, the more intolerant he became so over time we had to remove extra foods. He ended up gluten, dairy, soya, egg, coconut and rice free. Thankfully, at 14 he outgrew a lot of it. DS2 has dysmotility as part of his hypermobility. His sleep was dreadful and he was sick through the night until he was 3. He finally slept quietly (as he still wakes!) when he was 8.5. I have sad memories of the first few years and lived in a state of permanent exhaustion. However, at 13, he is awesome, manages his own difficulties and stays awake quietly in the night. He's off most meds and back on all foods.

This stage feels awful for you and it is incredibly hard, but you will find a way. Hang on in there.

Op I'm afraid I have no expertise or advice, I just want to offer you my sympathy having seen this for the first time. I really hope you get some answers and more support soon.

Although it might feel it, this won't last forever.

In the meantime, I think you're amazing.

Someone's maybe mentioned this but have you treated her for threadworms? Though you'd likely see them in her nappy in her poo.

Given the soya allergy try taking soya fed poultry out of their diet. We haven't found a safe source of turkey but might daughter is ok with corn or grain fed or organic chicken

Maybe it's not allergy related at all.

I hope I am not repeating anything.
my understanding is that if you have had over the counter melatonin it is very weak compared to what can be prescribed. It is not available from GP, only from the paediatrician.

Melatonin isn't available over the counter in the UK, but it is available OTC in several European countries like Germany, Italy and France which some people in this country obtain. It is also available via prescription in this country.

The OTC melatonin which is obtainable from Europe is actually pretty strong even for adults. So strong that I even took it as a liquid which allowed me to lower the dose on the basis of advice from Reddit which linked to research.

Hi op I'm so sorry to hear how you are feeling, could it have anything to do with her birth? I had a traumatic birth with dd and she cried and cried for months and it ended up being because she was vaccumed and forceps pulled out of me and it must have damaged her little neck and she was in pain , I've seen chiropractors do one little click in their backs / necks and it's like a new child

Thank you to all who have shared their stories, I feel like we are a greater minority than it often feels judging by the number of people who can relate.

@Superscientist All of our meat is organic, grass fed, etc. We've used a local butcher for years who we are good friends with and he's very particular about where he sources his meat. She has no symptoms of reacting to an allergy that she had when she was definitely consuming them though, eg. diarrhoea-like stools, mucous/blood.

@steppemum It's imported, 10mg in 1ml. Of course I've never given her 10mg but I have given her what would be a prescribed dose if it were to be obtained from a GP. When it became apparent that it wasn't having any impact though, we stopped for the sake of not wanting to disrupt her natural production/risk other side effects.

@applebee33 Completely natural birth, about five minutes from being an en caul birth. Both an osteopath and chiropractor couldn't detect any notable tension/misalignment, etc either in the following weeks or months later. I'm sorry you and your little girl went through that.

I'm sorry to hear of your troubles. My son was a terrible sleeper, not as difficult as your situation but not easy. We tried it all. I basically spent a lot of the early years sharing a bed, and I often go in now to help him sleep. He has been diagnosed with autism, and we suspect ADD. It's really difficult and I sympathise with all you are going through.

I just want to add, I often felt such dispair, I resented being a mum, I resented my son. I often thought life was so much better before, and to this day when things are difficult I do. It's like being stuck in a hole you can't climb out of. Please don't feel down on yourself for having human emotions. These feelings do not mean you are a bad parent or don't love your child.

Thank you, it's really helpful to hear this from another mum. It's like the ultimate cognitive dissonance - on the one hand my primal instinct is to protect and love her no matter what, but as you say the human emotional side generates unpleasant feelings at times. It does make me feel like a monster to have feelings of resentment towards an innocent child. I come from a family line of significant abandonment and trauma, and I vowed that ended once and for all with me. All I can think when the guilt comes up is the fear that I'm still passing it on and having watched what it's done to my own mum in her 50 odd years of life, it all makes me so sad.