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.

Can you put her to sleep on her tummy to see if that helps? Neither of my children slept on their backs due to silent reflux. They also have some kind of tummy issue because our eldest witholds and has constipation if we don't manage his diet/laxitives and I can see our 2yr old going the same way.

It's so hard dealing with issues when you don't know what's going on.
You need to offload her to your partner/or other family member for two full days and sleep sleep sleep and I think you will feel better.

We had similar with DC2 and it was his teeth. The pharmacist recommended equal parts paracetamol and ibuprofen and it definitely helped. We also used the teething powders.

I am so sorry you are going through this OP, sleep deprivation has been the worst for me too on my parenting journey so far. Have you tried an osteopath for babies, I read you said that your daughter had some cranial treatment but has she been seen regularly by someone who deals with babies only? We went to a baby osteopath for different issues and she mentioned she had a baby with very poor sleeping regime to the point the parents had almost on the verge of splitting up, the osteopath did whatever they do and the baby calmed down considerably, the mum and dad apparently ended up having two more after that. Please don’t feel resentful, your little one is desperately reaching out to you for help and crying is her only language, as they say if you are going through hell, keep going. I wish you get a gp referral soon and everything works out for you for the best xx

I'm so sorry. We had abnormal sleep for months - you get told it's normal but it's really not. I kept asking about iron and was fobbed off, only when she was hospitalised for something else did they realise her levels were through the floor. She was breastfed and had allergies like you so a more limited diet without supplementation. Once her levels were up it helped sleep.

Only other thing was after seeing an ENT they recommended nightly antihistamine incase of any dust type allergies. No idea if that's what it was or if the meds made her sleepy but it also helped. Not suggesting drugging for no reason but under the circumstances something things are worth trying short term.

Sorry if this is doing the annoying thing of suggesting things when you have tried everything.

Crikey OP that sounds horrendous. Please please go to SS, tell them how much you're struggling and ask for help. A friend had to do this - her child
was then assessed as needing 1:1 care 24/7, which is clearly impossible for one person to provide. So SS paid for respite care to enable her to have a break and get some sleep.

The medications might have dairy and soya in as fillers.

It's only £250 or so quid to see a consultant paediatrician don't wait. Can still go back into nhs after.

Does she sleep with you in your room?

Babies can be allergic to breast milk too. And very probably allergic to AD's. Stop BF. Try some specialist milk. My friend had to really fight to get special milk for her daughter. Can try some solid foods maybe soon.

@Flyhigher read the thread! This isn't a baby! And they're eating solids. She's already done exclusion diets.

Are you watching her on a monitor, what happens with her body at the instance of her night wakings. Sleep related movement disorders such as epilepsy or even sleep apnea can be miniscule in what they look like but often cause a lot of distress and waking up.

My nephew had nocturnal myoclonus. It basically looked like he would punch the air or twitch quite suddenly and he would be awake. This happened all night and disturbed his sleep massively. Often he would fall back asleep but often if it was a violent jerk he would cry. Epilepsy meds at night stopped this.

Sounds like my oldest -
had eczema, reflux and constipation
allergic to dairy and soy, only completely hypoallergenic milk was ok
large tonsils causing sleep apnoea (had them removed aged 4)
diagnosed ASD aged 6

Was a nightmare, spent a fortune on night nurses, barely remember the first 5 years. Would only sleep if being moved, so car, pushchair etc. No one understood how hard it was either, judgement everywhere.

On the bright side he's doing really well now, an A* student. You just have to get through it as best you can.

www.drmayankshukla.com/hypnic-myoclonus-children/

I'm sorry you're going through this,it's so tough, you sound beyond desperate. You have a partner - can you /do you take turns? Sleep in different beds? My night off, your night off, my lie in, your lie in. This is the only thing that has kept us going.

I wanted to say you're not alone,my child was a terrible terrible sleeper and I have memory gaps from it. In my experience, everyone bombards you with suggestions about allergies sleep training weaning because people generally don't believe it can be that bad without a medical reason. In our case, it was that bad without reason, all the advice in the world didn't help us. What did help us was time, eventually they gradually started sleeping that little bit better. Went from 10 wake-ups a night aged 1 to 5 a night aged 2 to 1 a night age 3. When we properly took turns and awarded each other alternate lie ins that helped a lot.

Good luck

My DS never slept before midnight and would scream non stop every evening
We took him to loads of doctors but they said there was nothing physically wrong and he'd probably grow out of it - which he did at 4 years old - but it was traumatic!

Looking back, I think I would have looked at his diet - he is 25 now and I don't think then (not living in the UK) importance was placed in this

Have you seen a cranial osteopath?

You have my sympathies. Our little boy was allergic to dairy and eggs and had terrible reflux to the point it has really damaged his baby teeth.

Even though he had no dairy and he couldn’t have eggs due to severe reaction. He still didn’t sleep for three years. Waking after initial sleep of 90 minutes all through the night. So that 90 minutes was our only solid sleep. The only thing I can say is at three years once he started to get better tolerance I assume with other foods he has got better.

I know that is not much help. Even three years later on I don’t think my brain fog will ever fully recover.

Sorry.

I worked with someone who had a daughter like this...only worse. Only slept for one hour bursts... the child had severe ADHD. It was managed as she got older but you have my greatest sympathies xx

She's having yogurt still. So she's having dairy.

Is your room very dark and does she have a teddy she cuddles. She's waking up in her light sleep phase. Probably dreaming. I kept mine in a sleeping bag for ages. Till 3 I think. She might have adhd though. Maybe the fruit sugar stimulates her too.

@madeinmanc Thank you for thinking of us. Not much better in all honesty, I've been feeling continuously nauseous for several days with no real reason as to why and have been doing all of the childcare single handed, so my cup isn't much fuller. I keep trying to remind myself of the positives and hold on to the laughs and cute moments, but honestly, it pains me to admit I also keep reminiscing of life before all this and wondering when I'll wake up to this all being some kind of dream.

@Hungrycaterpillarsmummy She's 18 months so sleeps however she wants, however on occasions I have noticed her on her front, she hasn't appeared to wake any less frequently or less distressed

@RudsyFarmer We've tried dosing her up immediately before bed and she'll still wake within an hour (when any pain relief should be at its most effective)

@Slav80 Yes, she's only ever see the same osteopath and she specialises in babies/infants. She saw her at just a few weeks old the first time and lastly at around 12 months - didn't remark any differences in findings at any point

@QuiltedHippo I appreciate everyone who's taken the time to reply, if nothing else it's somewhat comforting to know there are other people out there who have experienced similar levels of struggle and made it out the other side

There doesn't appear to be any precursor, she'll be fast asleep and still then suddenly rolls over and sits up whilst simultaneously crying/screaming. I did read a little on myoclonus a while back but it didn't really sound as though it described her. I thought it was another parasomnia when she was smaller and before she just started crying (it's also doesn't look like night terrors either) but again her presentation no longer fits.

@MumofSpud I've always been really careful with her diet, partly because of allergies but also because I wanted to bring her up on a more traditional diet (as in, more like our grandparent's generation would have eaten/minimally processed foods). She doesn't have anything with additives, high refined sugars, etc in. I only specify so as to give context that I don't think there's much behaviour triggering food that she eats.