To be considering a sleep consultant??

[mcscotty]

I am so sorry to be posting here but I am desperate and my very last nerve. I am starting to think there may be something seriously wrong with my DS.
He is 20 months old has never slept more that 4 hours in a row.
The last 3 weeks he has been waking at 10 / 11. He wakes and almost immediately goes into a nuclear tantrum. If we leave him in the cot he starts to batter his head against the bars or throws himself into the head. His forehead is yellow and blue with bruises. He screams and goes completely rigid with crying and starts urging as if he is going to be sick. It's almost like he cannot see or hear you trying to calm him, his eyes are swivelling, he his throwing his head back and thrusting is legs almost like he is fitting (he isn't but that gives you some idea of the intensity).
We have resorted to bringing him into our bed but even this doesn't sooth him. We have to hold him down to stop him throwing his head against the wall or throwing himself off the bed, he also thrashes his arms around and tries to hit us in the face, he has cut my lip and head butted both of us (DH thought his nose had been broken the other night he was head butted so hard).

It seems like even touching him increases his rage and he rips our hands off himself and screams harder.
The only thing that stops him is a bottle but the minute it finishes it he throws it and starts the screaming again.

I have tried even just leaving him - after 3 hours of shush/pat and gping in and out the screaming was still at a constant level with no sign of slowing down. We had to give up, we also cannot let him batter his head like he does.

We would ideally cut put the bottles as he is having 3/4 a night but it is the only thing that stops him screaming until he is hoarse or throwing up.

This goes on for hours, eventually he settles into a fitful sleep next to us where his arms are windmilling around and every 20 minutes he wakes screaming again. At around 2 /4 am we manage to put him back in his bed. Then he is awake for the day between 5/6 am.
He maybe has a very mild cows milk allergy and has been dairy free for about 8 months. I
He naps without issue during the day - we have tried varying the duration from 30 min to 1 hour 30 without it making any difference.
On the whole he goes down well at the start of the night and is tired enough to go straight to sleep at 7/ 7:30 until around 10pm where this will start. He is then utterly unable to settle himself.
At the moment he doesn't have a lot of words or speech (literally Mama, Dad, bye-bye, up, down, shoes) so I don't feel like I can ascertain exactly what is wrong with him, (he understands a lot however like "wash your hands" - he will go to the sink and try to turn on the tap)
We are seriously think of a Sleep Consultant as we cannot cope anymore, my mental health is in tatters and I dread the start of every day as I am exhausted, can anyone recommend one?
Please, please help.

I'd speak to health visitor or GP first. This sounds more than just a bad routine or an inability to self settle

If you can afford it, go for it. I know a few people who have done it and it really helped.

I wouldn't suggest a health visitor will necessarily be any use at all. Mine told me sleep deprivation was just something we have to live with as mothers.

I think I would get him checked out by a dr first. Make sure there's nothing causing him.pain or discomfort or is physically wrong that sounds very very extreme.

What's he like during the day? Does he eat properly? At 20 months he doesnt nutritionally need a bottle at night and I'm fact it could be meaning hes not hungry in the day and doesn't eat enough and is therefore hungry at night etc

( and please dont take that as a criticism God knows that we would probably all do the same in your situation )

Oh yikes that does sound extreme. Does he have any other developmental issues/suspicion of ASD? Or is it only around sleep his behaviour is outside of the norm?

I think I'd maybe speak to HV or GP first to rule out anything health wise.

A health visitor gave you and advice @MintyMabel but I don't think you should dismiss that this sounds like very very very extreme nighttime behaviour and I wouldn't want a sleep consultant to approach this by looking at routine or perhaps cry it out. My baby woke regularly until 18 months old. But ultimately if I'd have stayed next to her soothing her and providing endless boob she would have been quite calm and relaxed. This child is having the most extreme night time reactions I've ever heard of so I think it's absolutely critical that a GP or HV review this.

Thanks so much for your replies. We have spoken to both the health visitor and GP this week. The HV advice was to get into his room ASAP when he starts crying so it doesn't escalate into the tantrum. To be frank it doesn't matter how quick you get in, if you don't give him a bottle to get the tantrum, if you do give him the bottle you get the rage when it is drained. The GP said it was more a health visitor question and she didn't have any ideas.
We have raised the speech issue, he has been turned down for speech therapy and I can see why as he is still so young, although I am worried I am also placated by the fact he seems to understand so much.
We have questioned if he is in pain and the pumping of his legged looks like a baby with colic and sometimes he farts all the way through like a machine gun but he doesn't show any sign of pain in the day or during his naps. Also if something happens to distract him during these epic episodes (like the cat walking in) he will instantly stop, point, say BAH! (for cat) then resume again after a minute.
I am sat in a Tesco car park sobbing with tiredness at the moment. My DH has had to take both children for an hour as I just can not cope anymore. I am dreading tonight.

And his behaviour seems normal during the day. The head banging if he doesn't get his way is still a problem but he is adorable on a day to day basis.
He is bright, curious, loving, adventurous, full of hugs and thoroughly engaged in the world.

Oh and re: food. Going through a v picky phase at the moment. Most food gets thrown at me. He is only liking beige stuff like potato waffles, then other days he will surprise me by demolishing home made coconut dhal then reusing it the next.
Sorry my thinking is so disorganised from lack of sleep at the moment. I'm just throwing stuff down in writing as I think of it :(

Apart from the continuing for hours it sounded very much like night terrors, I was going to suggest stirring him at 9.30, not enough to wake but to change sleep phase. Obviously you've spoken to gp etc but ask for a referral if your worried.

My son was 16mths when I broke and used a sleep consultant. He was sleeping better than your child, but did resort to head banging on many ocasion’s. Within a week of starting with the sleep consultant he was sleeping through the night.

Even though this was pre-Covid I went with the option of remote support, so I never actually had her in my house. We did 1 video call, and the rest of the communication was via text.

I’m based in Northern Ireland, and the company I used are called Goodnight Guidance. They have a Facebook page.

A couple of months after sleep training my son had the flu so “rules” went out the window. Once he was better his sleep was worse than ever. However using the advice of the sleep consultant I had him back sleeping all night after a few days.

This sounds like us 5 months ago, albeit our DD was younger at 10 months. We got a sleep consultant and after 3 weeks of following her advice to the letter she gave us a refund. Through advice from a family friend we played around with her diet. We went gluten free for about 2 weeks to see if that changed things, it didnt so then we went dairy free and within a week we had a different child. Much calmer and less clingy in the day and the ear splitting screaming all night stopped. She had no other symptoms other than screaming all night. We are still working through it but believe it to be an intollerance to lactose. She has no dairy and lactose free formula and that works for now. We kept going to the doctor and they just said some babies dont sleep, but we knew it to be more. I really feel for you, I was on my knees for months it is so hard when literally nothing will stop the screaming. I really hope you get somewhere, but keep pushing the doctor/health visitor if you think it could be that. We didn't have a test. Just eliminated and it worked, so you could try and then if it works you can go to the GP and ask for a dietician referral for further advice.

I would persist with a medical opinion. His behavior is extreme enough that I would want to eliminate a physical cause before treating it as a behavioral issue. There are pediatricians who specialize in sleep disorders, a more sympathetic GP might be willing to refer you.

I used a consultant when I was sick and tired or night waking ups last summer. Also my partner and I didn't agree on approach and having a neutral party helped and actually he was right - I am emotive vs factual - ie our son really doesn't need a bottle at night.

Some of your experience I can relate to - upto 16 months my son was still having bottles at night (that's when we got advice) and if you tried to offer a half bottler he would hyperventilate sucking at the bottle to get more.

We did a gentle version of night weaning by moving to water and onwards.

But it was the help of a neutral 3rd party who helped us move forward.

But I have to say my son was sleeping through 17 months to 22 months and then we now have random nights where he wakes screaming for no reason. Doesn't want or need a bottle. We have put this down to either terrors or teething but my son too doesn't speak well yet so it's hard to know what is upsetting him.

I would be speaking to the GP again about this, not a sleep consultant. I think this could potentially be more than a sleep problem.

I would put him in a travel cot or toddler bed, the banging isn’t helping anything.
After that, if you feel you’d listen and follow a sleep consultant the most then go for it, or choose a different night plan yourself and stick to it. It will take four nights to change the habit. We only give water in the night for children over 9months - one of them raged about the change, the others not so much.
Exhaustion breeds panic and tension so you should try to plan your actions before hand, it will help you feel stronger.

im a sleep consultant, and id be wary about offering to help you without him getting a proper check over with the gp. i do have some questions though, if you dont mind answering? feel free to pm me if you want proper advice (for free)

however; you say he is dairy free. what milk is he having in his bottle?
how long has this been happening?
when he sleeps in the day, how long does he sleep for and where and what happens when he wakes up.

xx

memememe
Thanks so much for your reply. I will Pm you later this evening when I manage to put him down.
He is on cashew milk at the moment, he has been on oat and soya milk.
We always question if it is the milk. He started with oat. We switched to cashew as it seemed richer and we initially thought he was sleeping longer with it. We then went to soya as the sleeping got worse. Again same pattern, small improvement then the soya made him smell like a farmyard and this current nightmare stage started so we switched him back to cashew.

memememe
He sleeps in the day after lunch starting between 12:30 - 13:00 we have just cut it down to 40 mins as we had a few days when he wouldn't go down to sleep.
He sleeps in his room in his cot. He would sleep for 1 1/2 hours but that would cause more problems at night we found.
When I go to wake him he is VERY cross about 75% of the time and we get the tantrum head banging for at least 20 mins until something distracts him.
At night it seems as if he is so cross that he can't get back to sleep when he is actually knackered and really doesn't want to be awake.

If he wants to suck does he use a dummy?

I'm with others on this, sounds extreme, I would be nagging the GP.

Sleep consultants tend to be great if you are in bad habits - the approach I've seen a lot is they give you their standard routine, tell you to STICK TO IT no matter what (often including cry it out or controlled crying) - within 5 days or so voila.

However if you already have good sleep habits (no screens before bedtime, falling asleep on own etc) and a consistent, suitable daily routine, a consultant may not add much value

NoIDontWatchLoveIsland
Oh the dummy! He only has it at night. In these rages you can't get it in his mouth, if it does go in he rips in out and throws it across the room. We have about 8 in the side pocket of the rocking chair and he has thrown every one, one after the other. Sometimes if you hold it in his mouth he will start sucking and settle but at any moment he may rip it out, lob it across the room and start the screaming again.
His other favourite if he is in the cot and I am trying to get him to lie down is to "post" it down between the cot and the wall, then start crying because he doesn't have it.
His bed time routine has not altered since birth. 5pm dinner, 6pm bath, 7pm story / bottle/ bed. Unfortunately his waking is almost as predictable.

I doubt this will help in this case but since you are desperate might be worth trying cosleeping from the beginning of the night in the hopes that someone next to him will help him sleep through.

@borderscotch is absolutely correct. Definitely sounds like night terrors and you need to wake him before it gets to the time that he has them to alter his sleep phase.

I would contact a doctor. Film him and send the doctor the footage. It sounds like night terrors to me too.

My son didn’t sleep through the night until he was 4.5 hours. He also had a milk allergy and was on nutramigen. I hired several sleep consultants - one who spent 3 full nights with him. In total I spent about £2k on sleep consultants and read a zillion books.
What I ended up doing was I literally drew a rough picture of his body on a poster and wrote down all his problems to see if I could find a connection. He had various things like excema you couldn’t see on his head which was making him itchy. He had reflux. He ended up having some behavioural issues linked to years of no full night etc etc. His day sleeps (when very young) were affecting his night sleeps etc etc. Because of my experience with a child who would not sleep I am sometimes asked by mums for advice.
A few things spring to mind for you. I bet he is having reflux. The throwing the head back suggests pain. Elevate his mattress so his head is higher than his feet to avoid acid coming up his throat. Ask the doctor to try gaviscon.
I think he might be too tired when he is going to sleep. By now you would know about sleep cycles ie how children become semi conscious every 45/90mins to check they are in a safe environment. If he is waking up at the samesih time then something is interrupting that sleep cycle. It could be the acid but if a child is too tired when they go to sleep then they fall into a deep sleep straight away and then wake up too much at the end of one of their sleep cycles. I would either try and get him to sleep longer during the day (hard ask) or push his nap back 15mins and then in a week maybe another 15mins to see if that helps.
If he can control some of his tantrums ie when the cat comes in or whatever - then some of this is behavourial.
I have some suggestions for you. This is one of the most important things you could do I think. Find a good cranial Oesto with qualifications for working on children. The birth process can leave their muscles tight in their neck and put pressure on nerves going down the spinal cord (often has negative impact on digestion). It’s a real thing - insurance companies recognise it and Bupa paid for my son’s cranial because of it.
Read a good baby sleep book on suggested day nap times - there is lots of information around how the time a child wakes up is linked to the timing of their day nap.
Get a sleep consultant...but I would suggest you just find a good sleepline company. £1,950 of my sleep consultant expenses were sleep consultants coming to my home. But the best advice was from a baby sleep helpline (sorry too long ago to know which one) who you paid by the 15min slot and at most I paid £50 for several calls. When I had worked through all my son’s medical issues and I was left with behavioural issues it was their advice on a gentle sleep controlled crying method (where you left the room for 1min and then went back in for 1min - took hours but was kinder than straight out controlled crying) that actually got him to have his first night of sleep.
One other final thing. I am guessing your son had something going on in his early years. A stressful pregnancy, difficult birth? Regardless, it’s worth you googling infant reflexes not going dormant. I discovered when my son was 10 his infant reflexes had not gone dormant. I was able to resolve it but I think if I had of realised when he was a baby I could have gotten him to improve his sleep sooner.
Good luck.

Sorry that should have been my son did not sleep through the night until he was 4.5 years old.