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DS1 (3yo) has night terrors and coughs a lot when asleep - since he was born!

(13 Posts)
mawbroon Wed 28-Aug-13 23:24:20

Hmmm, if your ds2 has a tie, it's highly likely that ds1 has one too. DS1 fed for years and years too despite his ties. What happens is that the baby learns to compensate to make the most of the tongue movement that is available to them. How is his palate shape? The tongue movement shapes the palate, and often, kids with ties also have high, narrow palates which contribute to sleep apnoea.

You might be interested in Dr Brian Palmer's work on sleep apnoea. It all made sense to me about ds1 and seems to tie in with what we found in his orofacial structure.

We had ds1's ties (lip and posterior tongue tie) revised when he was 6yo. We went to a dentist who uses laser. He used a bit of local anaesthetic to numb it and it was all over in about 5 minutes. DS1 was eating about half an hour later, it really was a very minor procedure. (Before this, we went to a paed surgeon who put him under GA and then didn't even revise the bloody thing properly grrrr)

What is it that about revision that you would want to avoid? If indeed tongue tie is the problem...

schroedingersdodo Wed 28-Aug-13 14:46:13

Sorry for taking so long to come back, have been without internet for a few days.

Thanks a lot for the comments, it seems that NHS is consistently rubbish in cases of sleep apnea. You all made me feel more confident in pushing for a proper sleep study.

DS1's throat is not blocked at all when he is standing upright in front of the doctors - very useful to know of cases in which tonsils only come in the way when the child is lying down.

Sparkly, GP also thought of asthma and gave us an inhaler - we used it for weeks, made no difference at all.

mawbroom, tongue tie is an interesting suggestion. I've had a lot of pain when I started BF - he had no problems to feed or with weight gain though, so I just persevered and after a while it stopped hurting and he BF for years.

DS2 apparently had a tongue tie (according to my doula), as BF was painful as well - luckily, for only a week second time smile

Did you cut the ties (lip and tongue)? I'd like to avoid that if possible...

chutes all I can say is that in lots of cases, you only get things on the NHS after a lot of crying and screaming. Push for an investigation, shout, cry at the GP! smile The squeaky wheel is the one that gets the oil (at least that's what I tell myself)

After years of broken nights, wine to us! Hope it gets better for those still not sleeping.

frogwatcher42 Sun 25-Aug-13 22:23:33

I would also say tonsils. My dc throat used to close when relaxed into sleep although we didn't realise this for years. Could only ever sleep for a very short time (under half an hour) before coughing awake and being sick. Also had night terrors. It was awful - and nobody really believed us. Unless you experience it, I don't think it is possible to imagine how exhausting it is for all concerned (and how much bedding you need each night when you are changing it at least 4 times a night).

Tonsils out and all is cured - it was like a miracle.

Elibean Sun 25-Aug-13 22:12:39

I really feel for you, Spiffy. Watching your child be exhausted and not sleep is a) awful and b) exhausting.

dd2 was born with a floppy larynx (very noisy on the inbreath - opposite of asthma - when lying down on her back) and also had reflux, and even with that diagnosis, it took ages to get someone to take her sleep apnoea seriously. In the end, I videoed her sleeping (scary noises and frequent gasps for air) and showed it to an ENT consultant - having taken a one-off private appointment - who immediately looked at her tonsils and said he'd operate on the NHS within 2 weeks. She was just over 2 at the time, and life has changed 100% for the better as a result.

I wish I could help you to keep pushing for answers, I know how tough that is! As it is, I wish you loads of luck and stamina, and hope the leader of the clinic - whoever that is - is more forthcoming than the ENT doctor. Grrr.

ChutesTooNarrow Sun 25-Aug-13 22:10:17

My nearly 4 year old ds is the same. He has never slept a full night, he wakes screaming most nights. He coughs a lot.

We went down the sleep apnea route when he has about 2, after pressurising our gp for a referral. We were laughed out of the consultants office, due to the fact that I would bf him back to sleep. Told his waking was just habit due to that. No investigation was done at all. I did night wean him, he's been weaned for a year and still bloody wakes crying.

I was so utterly disillusioned by the consultant I haven't done anything since but try and manage it so that he gets enough sleep. He's always tired, it can make his behaviour atrocious somedays.

So I have no advice, will watch with interest and offer a squeeze of solidarity - it's really tough to have gone years with broken sleep sad

mawbroon Sun 25-Aug-13 21:58:21

DS1 was similar to this. He wouldn't sleep, in fact he didn't reliably sleep through the night until he was 5yo. However, when he was about 6yo, I watched him one evening, and he kept stopping breathing. He would stop for a few seconds and then start again and shuffle around the bed.

He developed a persistant cough around that time which wasn't helped by inhalers. It wasn't until he complained of a burning in his chest and being sick in his mouth that we realised he had reflux, so god knows how long that had been going on.

I read on here about a link between tongue tie and reflux. I wasn't sure if he was tied or not because his tongue looked normal to me, but it turned out that he had both anterior and posterior ties as well as a lip tie.

We had his tongue tie revised and the reflux stopped. It later turned out that it hadn't been fully released, but obviously enough to stop the reflux. I later learned that tied kids are notoriously bad sleepers. The position of the tongue can sometimes impede the airway and cause apnoea. He also had a very high palate which distorts the openings into the airways also causing apnoea and mouth breathing because the palate restricts the airways.

So, fast forward to now, we have had his ties dealt with and orthodontic treatment is working well to expand his palate and the headgear he wears at night is to draw out the middle section of his face and allow for nose breathing. The difference is incredible.

And btw, this was all done by private HCPs because the NHS were more than useless. I was poo pooed left right and centre. They did an endoscopy which was exactly as I predicted it would be (a bit of irritation from the reflux, but nothing sinister) and then they were not a lot of help other than pushing drugs. He is off them all now btw.

Could tongue tie be a possibility for your ds? Did you have any problems with feeding (either breast or bottle) or weaning?

Sparklysilversequins Sun 25-Aug-13 21:49:33

Asthma? Night time cough is a classic symptom.

spiffysquiffyspiggy Sun 25-Aug-13 21:48:40

He was 2 and a half when he had the adenoids out and the tonsils came out just before 3. Why on earth they didn't whip 'em out during the first op that diagnosed the problem I don't know. The surgeon did say it was something he saw on a fairly regular basis but usually in children that had been fobbed off for several years before a tonsillectomy was performed. sad The only way to diagnose it was to look down his throat while he was lying down. They looked normal otherwise. With dd I refused to leave the ent consultant's office until he agreed to operate, he looked at Ds1's notes and agreed (Dd also snored horrendously). Luckily Ds2 has been fine!

schroedingersdodo Sun 25-Aug-13 21:36:26

spiffy thanks for that, and I'm happy that you solved the problem with your DC! smile

Is there an exam to find out if the tonsils are on the way when DS1 lies down? The GP and the ENT said his airways are pretty wide, but maybe it is not the case when he is lying down?

How old was your DS when he had surgery?

Quangle Sun 25-Aug-13 21:32:41

awful for you.

DD had night terrors so I can sympathise on that - and DS had shocking sleep, in his case due to chronic ear infections. I had to absolutely shout and scream (and cry) in the ENT consultant's office in order to get them to put in grommets and he hasn't had a day's trouble since the op was done.

So I would say you need to up the shouting and screaming since they are not listening to you right now. Any chance you could pay for a private consultation with an ENT specialist? It sounds like an adenoids/tonsils issue and frankly if they are going to do a GA for an endoscopy, they may as well get the adenoids out while they are at it!

spiffysquiffyspiggy Sun 25-Aug-13 21:24:21

Ds1 had night terrors and a night cough and didn't sleep for more than 20 mins at a time I said for aaages that he had a problem with his tonsils but everyone dismissed it. Eventually they agreed to take his adenoids out as he had numerous infections. We got called down to theatre where the surgeon told us "that child has never slept". As I went YES! He explained that his tonsils were so large they blocked his throat and stopped him breathing when he lay down. Not visible in a normal exam, only when he was lying down. Soon as they were out he slept. Dd had the same problem but got operated on very quickly.
Hope you find your problem and a cure soon. Constant interruptions to sleep are no good for children or you.

schroedingersdodo Sun 25-Aug-13 21:08:27

No one? sad

schroedingersdodo Sat 24-Aug-13 15:59:58

DS1 has slept for the whole night for 3 times in his life. He is 3y3m and screams and wakes up every bloody night since he was born. Several times every night.

When he was a baby, he would scream and THEN wake up, but hv and gps told me to sleep train him (they didn't believe he wasn't just "waking up and crying to call me").

Years passed and I found out the technical name for what he has in "night terrors" - he screams and screams without waking up. He also coughs a lot and snores.

He has bags under his eyes all the time and complains about being tired since morning.

After insisting a lot I got him to the gastroenterologist (I thought it might be reflux), who told us to give him omeprazole for a month. Didn't help. The next step would be an endoscopy, which is done with GA in children, so not a simple exam.

Now I'm trying to push for a sleep study as it looks like sleep apnea. (sleep apnea can cause night terrors). It's not easy to be referred to a proper sleep study, spending the night in the hospital, etc. We've seen an ENT specialist who refused to refer him and told me to book another appointment with the leader of the clinic. Which will take several weeks, of course (I waited for 3 months for the useless consultation).

I'm at the end of my rope. Over three years with no sleep is not fun, and it affects DS1 behaviour as well. Every time a GP or specialist fobs me off it takes several months to get to see someone else.

Does anyone have an idea of what it may be?

Any suggestions?

We have private healthcare (pruhealth) but they refused the referral from the GP saying it was a "chronic condition" (as DS1 has this problem from birth). Which is not true, of course (we haven't found out what is wrong yet, which is something completely different from "chronic condition").

I'm so angry at everyone now.

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