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Huge tonsils and eating problems.

(65 Posts)
EarSlaps Sun 19-Jan-14 07:48:44

Ds1 (4 1/2) has huge tonsils and has always been a terrible snorer. He also struggles with eating- he is painfully slow to eat and really struggles with different textures. He has always only eaten soft foods and refuses anything chewy like meat.

I'd never connected the two, but it seems like they may be partially connected. I guess something large at the back of his throat would make it hard to eat and swallow.

Has anyone else had issues like this? How has it been resolved? I know they are reluctant to remove tonsils but can they be reduced?

We gave BUPA cover, so hopefully we should be able to get an ENT referral on that?

greencybermummy Sun 19-Jan-14 08:45:11

Simple answer, yes can be connected. Go to see ENT Cons and discuss the snoring, eating issues. Having them out can make huge difference, good luck.

EarSlaps Sun 19-Jan-14 09:06:53

Thank you.

I think I'm going to video his snoring tonight (we noticed last night that his breathing was very irregular but he hasn't complained of a sore throat at all so I don't think they are infected). DH noticed them last night when they were playing doctors with a torch, so it makes sense of the snoring.

He often says he's hungry but then can't eat more than a few mouthfuls at snail's pace, and his sleeping is pretty fitful so it all seems to make sense. Thank goodness for BUPA cover through dh's work, I suspect that will make getting a referral considerably easier.

Eating has been an issue ever since lumps were introduced at weaning stage and he has always been 0.4th centile for weight despite having taller than average parents. He weighs 29lbs/13kgs and the NHS BMI calculator has him as very underweight.

EarSlaps Sun 19-Jan-14 09:09:35

Oh, and we have been to the HV and GP about his weight- we even had a dietician referral so I haven't been ignoring it. We just try to focus on getting as many concentrated calories into him but he's so fussy about textures and really scared of food. It's a constant worry.

greencybermummy Sun 19-Jan-14 20:39:20

Goodness poor thing. Great idea to film sleeping/snoring that will be more evidence for ENT bod. Sleep apnoea can be related and where I live they often do a sleep study before the op to see if child is stopping breathing momentarily in their sleep. I'm fairly certain from what you say that your ds will see a marked improvement in his quality of life with regard to eating if he has his tonsils removed. Your gp could refer you to an ENT consultant if you ask but if they haven't already made the links when you've been for advice then confused . Do pursue it won't you. Good luck.

millymolls Mon 20-Jan-14 11:54:01

Sounds very similar to my son, who was referred to paediatrician for low wieght, and terrible eating and while at the hospital feeding clinic happened to be seen by an ENT consultant who started questioning is sleeping patterns and other issues. From there on in the focus became his tonsils and adennoids and these were removed (when DS was 3)

What i can say from that is i) sleeping improved literally overnight and he turned into the most energetic little boy ever. ii) he's not had an ear or throat infection since (4 years ago now, touch wood!) and iii) while he is still fussy and is reluctant to try things his eating has improved significantly and in particular his appetite really increased (again liter\lly overnight). He is 7 now and in aged 7-8 clothes, and while still quite skinny no longer looks ill, and is on 50th centile (having dropped to the 2nd) and eats a quite wide variety of food (there is still room for improvement with 'wet' food like cottage pie etc)

His eating will most definitely be impacted by his ENT issues and while i'm not a doctor, and not qualified therefore to make diagnosis i would suggest that you definitely need to be referred to ENT!

Good luck

millymolls Mon 20-Jan-14 11:55:06

oh and it used to take my DS ages to eat even just a slice of toast - he used to nibble it like a mouse, small small bites. Now he is quite happy to just 'shove everything in'!

EarSlaps Mon 20-Jan-14 12:02:23

Thank you both, that gives me a lot of hope.

Well he actually has a sore throat today for the first time so is off school watching Wallace & Gromit with a nice cup of camomile tea smile.

I never pushed the weight too much as DS always had plenty of energy and was never poorly. However, recently he is alway tired and looks a bit pale. I give him supplements but it makes no difference. He started school in September, so I put a lot of it down to that, but even in the holidays he was lethargic.

Got an appointment with the doctor later on so will push for a referral, then DH needs to get on to BUPA to authorise.

EarSlaps Mon 20-Jan-14 12:04:38

Yes, lots of tiny little mouse nibbles here too! And fifty bloody minutes to eat 3/4 of a bowl of pasta the other day.

EarSlaps Mon 20-Jan-14 12:06:48

Oh and I wanted to film him last night but he didn't snore, but there was a lot of stop/start breathing.

SJisontheway Mon 20-Jan-14 12:14:51

Sounds like my dd. She had tonsils out at 3, but as well as the feeding problems and terrible snoring, she also had recurring tonsilitis.
Since then her eating and sleeping have improved vastly and she is a much healthier child.
Regarding weight gain, in the mean time, you could ask to be prescribed a high calorie milk shake like fortini. Dd had this when younger and her weight gain really improved.

EarSlaps Mon 20-Jan-14 12:22:41

I think we never really thought of tonsils as he's never had tonsillitis or complained of a sore throat before. DH has huge tonsils and gets at least one bout a year still (though it was much better last time when he actually bloody listened to me and gargled salt water early on), and ds2's look pretty large too (though no eating issues there!).

Not sure how he'd go with a milkshake- I made him one at home with milk and banana which he said was delicious but he only managed a few sips of it! I might ask though just incase it works.

MissMilliment Mon 20-Jan-14 12:36:01

DS had his tonsils and adenoids out at 20 months due to recurrent infections, constant snoring and (the clincher) sleep apnoea. I thought he was generally pretty healthy before the operation, but afterwards he had a massive growth spurt and his sleep improved dramatically.

The stop/start breathing you mention really needs investigating, in my utterly non-medical opinion.

It's definitely worth considering, OP - I won't pretend it was easy taking him for the surgery but it was so worth it. He's 14 now and as far as I can see has had no negative consequences of the surgery at all, only positive.

EarSlaps Mon 20-Jan-14 17:47:45

Well the gp was happy to refer. We're getting the appointment through bupa but they say they won't cover surgery if it's a sleep apnea issue, but should do if it's eating related hmm.

Gp said with nhs we'd get a referral but be very unlikely to get surgery. So not sure where that is supposed to leave us. Depending on cost we could probably find the money I guess but it seems harsh to those that can't.

greencybermummy Mon 20-Jan-14 23:18:14

GP isn't the consultant so he's no idea about whether your DS would be suitable for surgery! Listen to expert!

I took DS(3) to see the NHS ENT consultant last week. DS gets tonsillitis continually, although he rarely complains about pain, and he also snores and has sleep apnoea.

I have lost count of the number of times he has had tonsillitis, even just in the last year. I took him to see the GP about the sleep apnoea last year, as DS is always tired, and he dismissed it out of hand. I got an ENT referral from a different GP, who looked at the number of times she had seen him for tonsillitis.

The consultant immediately recommended taking his tonsils out. Not for the never-ending bouts of tonsillitis, as I would have thought, but because of the sleep apnoea. He said it wasn't normal for a 3-year-old to be so tired (I have to wake him most mornings, otherwise he'd sleep to 9am-ish), and that sleep apnoea was a serious condition that could have long-term health implications. The op will be within the next couple of months (NHS), and because it is sleep related they will keep him in overnight. I'm nervous as hell, but I think it is the right thing to do.

duskymoon Tue 21-Jan-14 06:57:11

You can ask for a night oxygen saturation test. Bupa unlikely to do this but ent at hospital did. Some do as in patient - I was lucky mine let me take machine home and return next day. It is plaster with light that goes round big toe and records oxygen saturation levels. Doesn't hurt. Have a good look at his cheast - does it have a hollow indent in it - pectus excavatum - can indicate apnoea.

Apnoea is one of the reasons they do take them out now as it effects concentration and learning. Both my two had tonsils and adenoids out within a few months of each other at 4 yrs and 2ys . So glad I did. You may find hospital a much beter bet than Bupa referal in this case as I don't think they would do this type of surgery.

duskymoon Tue 21-Jan-14 07:02:37

Your GP is talking bollocks by the way - hospital will recommend surgery if he needs it - you will not need to pay. My ward had 6 child tonsil surgeries on the list both times I was there so there are lots of children getting their tonsils out. It is less common than usual - which is prob what the GP means. ENT decide not the GP.

EarSlaps Tue 21-Jan-14 08:44:34

Thank you all. The consultant we're seeing is private and nhs, so he can advise whether we meet criteria.

My friend's daughter had hers out last year and they had to write a letter justifying it to the health authority before it could be approved.

ipswichwitch Tue 21-Jan-14 08:55:38

We're off to ENT today for the same thing. 2.3yo DS has sleep apnoea, with night terrors, sleep walking is very hyper at times but always has bags under his eyes. He's had several bouts of tonsillitis and ear infections (aparently related) and is a faddy eater. His solid intake DS improve when they finally diagnosed severe anaemia at 10mo (despite many Gp visits, we had to insist on bloods being done and he wound up in hospital).

I hope to god they say they'll do the surgery. It's awful seeing him like this - every time his breathing stops he jerks awake terrified and screaming and we're now at the point of poor DH camping on his bedroom floor every night after the first waking because he's too scared to go back to sleep sad

Good luck with it EarSlaps hope you get it sorted

millymolls Tue 21-Jan-14 10:26:28

We saw the ENT consultant privately throught BUPA - however, once he had determined that it was recommended my DS have his tonsils and adennoids removed, he then referred us back to his ENT Clinic at the local NHS hospital (he does both private and NHS). He stated reason for this is that they do not like to do these sort of ops in private hospitals because as NHS have more specialised paediatric care in the operating theatre and faster access to blood should anything go wrong. That scared the sh*t out of me when he mentioned that but in a way reassured me that in the very unlikely situation of a problem my son would be in the best place.

Good luck!

EarSlaps Tue 21-Jan-14 11:04:13

Best of luck ipswich (are you actually in Ipswich? I was born in Heath Rd hospital).

Very useful info thank you milly. Does sound scary but good as it sounds like they have the child's best interests at heart rather than just money. The private hospital we're going to does do paediatric surgery but then we are near a very good children's hospital too.

ipswichwitch Tue 21-Jan-14 19:29:58

I was born in that hospital too but live up north now - mum likes to give me regular updates on the state of Heath Rd though!

Saw ENT consultant and she said they'll take his tonsils out and that was before she even examined him! He's getting the surgery done at a different hospital so he'll be seen by the specialist paediatric team (said the same thing to me millymols) so just got to wait for that appointment now. Bloody Gp led me to believe they wouldn't take his tonsils out and they only did it unde exceptional circumstances, which he said DS isn't confused. If stopping breathing isn't a good enough reason I don't know what is!!

HypodeemicNerdle Tue 21-Jan-14 20:14:14

I have genuinely dithered about posting this but if you are worried about eating issues please push to get your DS's tonsils removed. A friend of mine came frighteningly close to loosing her DS when he was 4 after he choked on a piece of food and even Heimlich manoeuvre couldn't dislodge it as his tonsils were too large for the food to come back out.

I'm saying this not to scare you but maybe as an extra bit of ammunition to put to the consultant. The hospital where this happened (not in the UK) changed their tonsil removing policies after my friend's DS's accident.

MissMilliment Tue 21-Jan-14 21:20:09

millymolls we had a similar experience to you - we went through BUPA but the op was done in an NHS hospital for the same reasons - plenty of specialist paediatric facilities on hand if needed. DS had a bit of post-op bleeding which was scary but not actually dangerous, and the staff were fantastic.

He was in overnight (I stayed with him) and home the next day - if I remember correctly he had to have a drink, something to eat, and a wee before we could take him home smile

EarSlaps Tue 28-Jan-14 13:37:26

Well, the consultant was pretty impressed with the size of DS 's tonsils! So he's recommended adenotonsillectomy, plus he noticed some glue ear so they're going to do a hearing test and potentially put grommets in one or both ears!

BUPA have now okayed it so it's just down to getting it booked in. Because he's so tiny (4yo but only 13kg/29lbs) he might have to stay in overnight. It will be in the private hospital- it's a big hospital so they have a dedicated pediatric care team.

Hypo- that sounds so scary. DS never really puts anything in his mouth he could potentially choke on- it's all soft food or tiny bites. The consultant said it's really common for children to eat better and gain weight after the operation.

Nervous, but relieved. This should really help, the better sleep and better hearing alone will improve his quality of life no end. Fingers crossed it helps the eating too.

mawbroon Tue 28-Jan-14 13:55:02

It is also worth investigating the possibility of tongue tie.

DS1's ties went undiagnosed until he was 5yo and had many of the problems you describe - snoring, chewing, eating a few mouthfuls then saying he was full (he was swallowing down air), refusing chewy food, ear trouble etc.

He also had gut issues and bouts of apnoea and a very high narrow palate which restricted his nostrils leading to mouth breathing.

We had the tongue revised and he is having orthodontic treatment to widen his palate. All is good now!

Procrastinating Tue 28-Jan-14 14:03:41

My son had exactly the same problem OP. Huge tonsils, poor eating (fear of food in fact), very thin, snoring and sleep apnoea (I filmed it and you can do a test if you ask your consultant), glue ear discovered later.
He had he tonsils and adenoids out at age 4 - an overnight stay and it was fine. The sleep apnoea stopped and he put on weight eating more of his usual foods.
He is 9 now and still won't eat normally. Not being able to swallow properly has left him with a psychological problem with food. I thought this would go away, but it hasn't - if I were you I would look into getting some therapy for your son too.

Best of luck.

millymolls Tue 28-Jan-14 14:14:27

Good luck. Hope it all goes well (mine DS had adenotonsilectomy and grommets in both ears)
What we hiave noticed is his appetite increased significantly and that made a huge difference to my own DS eating - i would say that like Procastinating, my son also does have other issues with food - textures really and an underlying 'fear' of trying new food - he HAS come a long way and from a size and health perspective is a very different boy to the one pre-op.
Hope you have lots of success with your own child

EarSlaps Tue 28-Jan-14 14:19:02

Interesting mawbroon, he had complete tongue tie which was snipped at three days old. I think he does have quite a high palate, certainly breastfeeding was difficult even after it was snipped. We'll just have to see what happens after the op.

Yes, he is scared of foods, gets very stressed about trying any new taste or texture (he knows he likes banana taste but will not try them at all even though he wants to). When we went to the dietician I remember saying a psychologist would probably be more appropriate for his eating issues. We did a snoring video too smile.

Elibean Tue 28-Jan-14 19:47:06

Yes, OP, dd2 was the same - at the age of 2 she almost stopped eating solids and looked like a starving spider with black bags under her eyes. She also had sleep apnoea.

I would hot foot it to ENT! dd's life, and ours, changed enormously after her tonsils and adenoids came out. Good luck, let us know how you get on.

EarSlaps Tue 28-Jan-14 20:40:41

Yes, huge bags under the eyes!

DH and I are both agreed that it's worth going ahead, so I'll ring tomorrow and try and book in for the op.

mawbroon Tue 28-Jan-14 22:19:25

Earslaps what you describe sounds like an anterior tongue tie, but it is possible to also have a posterior one and/or a restricted upper lip. Many significant ties are missed because often the tongue can look completely normal to the untrained eye.

It is very common for high palates to be caused by a posterior tongue tie. The palate is smoothed by the tongue whilst in the womb and beyond, and if the tongue movement is restricted, the palate does not smooth and flatten the way it should.

I will give you the benefit of my experience and tell you that the NHS are worse than useless with tongue tie related matters, except for the obvious anterior ones. Some do not even believe that posterior tongue exists <hits head off brick wall>

Where are you based? There are a couple of dentists who have trained with Dr Kotlow who is a leading expert on ties. Unfortunately, one is only dealing with under 1s and over 6s, but the other is doing all ages.

bobkate Tue 28-Jan-14 22:24:43

earslaps I was the one that didn't want to hijack! We've decided it's worth doing too. My DD also had a tongue tie and has had bouts of glue ear in the past. We won't hear anything for a few weeks I'm sure though, but I'm quite pleased there's a bit of a delay. I'm hoping that by the time we get to the top of the waiting list it'll be more spring like and less likely for colds and bugs to be about. Pleased also that it means it'll be done before she starts school full time. Will be keeping an eye out for any news on your DS's op.

EarSlaps Wed 29-Jan-14 07:08:27

Both my boys had anterior tongue tie snipped very early on. I think they both had lip ties too (only noticed when ds2 was about 1, then I inspected ds1 and it looked like the remains of one). I will mention it to the consultant and see what he says. Looking at symptoms of tongue tie, I think it's very likely both DH and I had some level of it but it wasn't really thought about in the late 70s. I'm in Bristol mawbroon.

Glad you're getting it sorted too bobkate. I wish we had known about it ages ago so we could have sorted it before he started school. I'm certainly going to keep an eye on ds2 for any symptoms of tonsil problems as his are big too.

mawbroon Wed 29-Jan-14 10:12:48

Be prepared that an ENT consultant will dismiss any link with tongue tie.

EarSlaps Wed 29-Jan-14 12:58:14

20th March!

bobkate Wed 29-Jan-14 14:36:29

Fab! Will be back to hound you for preparation/recovery tips as no doubt ours will be after you! smile

EarSlaps Tue 04-Feb-14 15:45:01

Well, the hearing loss is quite severe, so he's having grommets put in at the same time as his tonsils are taken out. Feel quite bad I never noticed really, but his teacher was surprised by it too as he doesn't seem to struggle in class. He does switch off a lot though and go into his own world, so I suspect he has to work quite hard to listen sometimes.

MissLivvy Fri 07-Feb-14 15:19:44

My DS had tonsils removed at 12 by NHS. Never really had many infections but years of difficulty swallowing food, ENT consultant recommended removal due to size and slight asymmetry. After op said they were biggest tonsils he'd ever seen! DS 16 now and haven't looked back, no problem with eating now.

EarSlaps Thu 20-Mar-14 19:39:33

Well, the operation was today.

I'm feeling quite emotional after the op! Watching him go under the anaesthetic was much harder than I could have thought. I was ok until then, then when his eyes rolled back and he slumped down I thought I would burst into tears. Then he woke up screaming about how much it hurt, and of course the screaming made it more sore. Still, they gave him some rather strong pain relief and he had a little nap (after puking all over himself). The tonsil fairy gave him a Lego stationery set and a hot wheels car, which perked him up a bit. He's there now with DH overnight , DS2 and I have come home and the stress has finally hit. I think we'll be in for a tricky few days but it will be worth it in the long run.

He was still snoring away when he was asleep, but that is apparently swelling from the op- they didn't forget the tonsils.

I really hope we get some improvement from this in his eating, but even if we don't hopefully the better sleep and hearing will be worth it.

bobkate Fri 21-Mar-14 15:43:08

Glad it all went well earslaps - we've got our date through - 8th April, so would love it if you could keep this thread updated with how your DS gets on with the recovery, etc. I too am dreading the anaesthetic.
Did you tell him much before hand? My DD knows her tonsils are going to go away ( I haven't said they're been taken out as such ) but wondered about getting a book to read to her....or to just wing it? Love the idea of a tonsil fairy - that's brill. I think I'm going to pinch that idea grin
I hope he continues to do well smile

EarSlaps Sat 22-Mar-14 07:31:09

The lady in the room next to us gave me the tonsil fairy idea smile.

We did tell him what was going to happen and gave him as much info as we realistically could. He's 4.8 though and I wanted him to trust us so I was as open as I could be. There are a few books about going into hospital, we borrowed an Usbourne book that talked about an operation on the ears. He had grommets too so it was quite relevant.

He's feeling pretty sorry for himself, last night was tough as we had lots of wake ups and mixing up tramadol at 4am. Ice lollies are great, they provide fluid and calm down swelling. He's just had one for breakfast, plus some warm camomile tea and a spoonful of manuka honey. We're struggling to get him to eat much else but it's early days.

Keeping up with regular pain relief is really important too- we're putting all the details of what he's had and when onto a whiteboard so we can make sure he's having enough and not too much.

EarSlaps Tue 25-Mar-14 18:09:34

Poor boy is still struggling quite a bit, he seems quite pained. He wants to eat but is really struggling and can only manage a few mouthfuls, he often ends a meal in tears sad. What he fancies seems to change all the time. Chocolate seems to be going down well, pancakes yesterday but not today, jelly sometimes and not others, icecream sometimes. Mostly he's eating dry chocolate cereal, at least it has added vitamins!

He had a lovely nap on the sofa this afternoon and seems a bit brighter now, but it can be up and down with painkiller levels. I can see he's getting a tiny bit better all the time though. It's only been a few days but to a 4yo that seems like forever.

Loz1975 Tue 25-Mar-14 19:21:48

Hi , my DS nearly 6 had the same op 3 days before yours. Its been harder than I expected. He's the same, most meals end in tears with the pain. My GP gave me a anaesthetic throat spray which has helped when he finally agreed to let me spray.
I could have written your last post, up and down with pain levels. I asked if there was anything I could give that was stronger than paracetamol and nurofen and told no by my GP. Was your tramadol given by the hospital? Our day 6 peaked with pain again and he was quite upset as scabs were coming off. We are day 9 now, the nights are calmer now but more tears today trying to have lunch but been fine since. I also have to write down when pain meds given or I'd never remember.

Hope things are better for your DS, it'll be worth it when all recovered I keep telling myself.

EarSlaps Tue 25-Mar-14 20:06:24

Yes, tramadol came home from the hospital, I think we got about 20 tablets which we have to mix each in 10ml water and give 2ml. We're trying to use that one as little as possible (they told us to phase it out first). So we are using it at bedtime and only if he is really struggling in the day. He's had it twice today. It might be a private healthcare thing as my friend's daughter didn't get it after her nhs op.

Glad the throat spray has helped a bit. We're going with grazing mostly rather than meals, he has got through about half the box of chocolate cereal since we got home. He managed a whole pot of jelly too. I've read a lot of adult accounts of recovery which has made me very sympathetic.

It will be worth it in the end. I have explained to him why we did it and he seems to understand.

Elibean Wed 26-Mar-14 10:21:26

Just wanted to wave and add some support for the ENT littlies...it can be a very painful time for some (it was for my dd, and she was 2 at the time) though I remember lots of kids going through the op at the same time as dd seemed to bounce back with far lower pain levels.

My top tip: give pain relief (whatever it is) five or ten minutes before its due. So they are never without some. I used to set my alarm to give it in the night, before dd woke up. Also, keep it going for at least a week to ten days.

Also, really don't worry about eating for a couple of weeks afterwards...dd was like a spider to start with, all arms and legs and black eye circles, and got even thinner afterwards. But within a month (I look back at photos) she was eating better than ever before, and after three months was thriving as she never had.

It really, really is worth it flowers and you are all great to be supporting your kids through it.

Elibean Wed 26-Mar-14 10:22:40

Oh - and dd was given Voltarol suppositories (stronger than nurofen) and paracetamol suppositories, as her throat was too sore to swallow meds at all. Though easier with a 26 month old than older kids, as she barely noticed smile

EarSlaps Wed 26-Mar-14 11:05:05

Thanks Elibean. It must have been so hard with a 2 year old, at least DS understands what is happening.

Another bad night ("it really hurts"), he tried some pancakes this morning but struggled with that so more dry cereal and a huge bowl of crisps! Really trying to get him to drink, he's not a big drinker normally and only ever has water, milk or herbal tea so I can't even bribe him with juice. He's having quite a lot of camomile tea which is good and soothing.

He now says it's itchy, so I'm taking that as a sign it's healing. I know he'll be better before we know it, so I'm looking forward to that. No doubt he'll be ready to eat loads of chocolate for Easter grin.

EarSlaps Sun 30-Mar-14 18:58:37

Another update for any watchers smile.

A week after the op was tough- he seemed quite poorly and more sore, we had a bit of dried blood around his mouth. I think it was the scabs falling off, as after that he has been much more himself. He's been perky and energetic (running around all afternoon), not waking up as much. Eating still a bit of a problem but getting there, I can imagine it'll be sore for a while. He's still having the painkillers but I don't notice a massive dip at the end of a dose any more.

We're seeing the consultant again on Tuesday, hopefully he'll be happy with the recovery.

bobkate Tue 01-Apr-14 21:44:53

Thanks for updating earslaps - I meant to reply when I first read it but got waylaid. Glad to hear that he's more himself now. How did it go with the consultant today?
I'm getting nervous now! A week today and my little one will be hopefully home after her op but as for what to expect, I'm still not quite sure I'm fully prepared for what's to come.
I've been to get her tonsil fairy gift and I saw a new hello kitty sports bottle whilst out, which I know she'll love, so I'm hoping that'll be the encouragement she'll need to drink lots.
Okay so top tips if I can remember them all...
1) pain relief 5 mins earlier than due
2) lots of lollies, crisps, scratchy food & lots to drink if poss
3) plenty of bottles of pain relief in the cupboard
4) lots of different types of food
Have I missed anything obvious?

EarSlaps Tue 01-Apr-14 22:41:33

All fine with the consultant today. Seems like we were unlucky really- we saw the boy who'd been in the next room to us and it seemed like he sailed through. He was up and about really quickly after, not too much pain and really perky.

Propping up with pillows helps a lot too with the pain. DS spent day times on the sofa with favourite DVDs and we tried to keep him upright at night when possible.

The sports bottle sounds like a brilliant idea. I also gave DS quite a lot of manuka honey- if he was crying for medicine and I couldn't give him any yet he had 'honey medicine'- soothing for the throat and made him feel he was having something. He's a big of a drama queen really.

Be prepared to feel a bit 'what have we done' at times if your dd struggles afterwards. It's really hard seeing your child struggling but I know it will be worth it in the end. He's got his hunger back a lot now. Still eating slowly but my friend said it took her dd a while to adjust. No snoring now either- it's really strange!

Good luck and let us know how you get on!

SJisontheway Tue 01-Apr-14 23:06:06

hi EarS. I posted early on this thread and just catching up with your updates. It sounds like he's doing well. Dd was a full 2 weeks before she got her appetite back, but since then she has been so much healthier and her eating, sleeping, general health have all improved so much. Good luck to your boy for the rest of his recovery.

bobkate Wed 02-Apr-14 22:39:45

Thanks for the pillow advice..I got some camomile tea today, no idea if she'll like it but I can try - how much manuka honey do you use and when you say you gave him a lot - in what format? Sorry for the probably silly questions!
Also thanks for the heads up on the 'what have we done' feeling. Tbh I've already got a bit of that but think it's just nerves.
Thanks SJ too - it's good to hear that your DD has shown such a positive result.

EarSlaps Thu 03-Apr-14 14:56:12

I put a little bit onto a medicine spoon- makes it look more serious and like it might do something smile. Give as often as circumstances demand but all done with the same seriousness as giving medicine! You can also melt some honey into camomile tea and serve it at about blood temperature, that was how DS liked it.

He's back at school today, will go and get him in a moment and see how it went! Only in today and tomorrow and then 2 1/2 weeks of holiday.

bobkate Thu 03-Apr-14 17:46:04

Aha! Clever grin - see, I'd never have thought of that but what a fab idea. Hope he's had a good day back at school today and thanks again for coming back to help smile

bobkate Wed 09-Apr-14 22:31:16

Thought I'd update too grin. Well, madly touching wood, it seems that she may well be one who has got off quite lightly...well so far anyway. Like you earslaps the worst bit for me was when they put her to sleep. She sort of coughed and spluttered as though she was choking just as she went floppy and I had no idea if this was normal or not. Very disconcerting until the lovely nurse told me she was fine and it was normal. Anyway - after the lovely nurse had warned us that she may well be very distressed on waking, she came round shivering, looking confused and sleepy but not distressed.
Then she just coped fine with everything. She came round more, had a little to drink, a couple of mouthfuls of toast, went back to sleep for an hour, then was awake, more food and drink. We came home, all fine.
She didn't go to sleep until about 10pm but then she slept straight through without waking for pain relief. She's not been complaining of the pain very much at all - and we've been doing pain relief nearer every six hours, as opposed to 4. She's been eating and drinking fine. Played in the garden for a while today.
I think, unless we're going to hit a massive wall soon, we may have just been one of the lucky ones for which I'm so thankful.
Obviously I may well have to eat my words and wish I'd not spoken so soon but so far so good smile
earslaps hope your little one is continuing his good progress and back to tip top health x

EarSlaps Thu 10-Apr-14 13:17:12

Wow, glad it has been ok so far! Sounds like she's doing brilliantly, you must be very relieved.

DS seems much better now. Not too much improvement on the eating yet but definitely seems hungrier. Still struggling with eating slowly (hopefully that will pick up soon) and still a fussy eater. Seems less tired which is good and looks a lot less grey!

Fingers crossed your dd continues to recover well bobkate -smile.

bobkate Mon 14-Apr-14 08:53:24

Haha - serves me right! I was speaking too soon! Poor thing is really suffering at the mo. We had a bad night last night, very fretful. I'm glad I've been writing down her meds, otherwise I'd be getting really in a muddle. I actually think that she did too much playing yesterday, and looking back I'm sure that didn't help.
Earslaps glad your DS seems much better. I'm sure the eating will pick up slowly. My older DD is THE slowest eater it seems with no reason other than she's a slow coach. Although I remember being constantly nagged when I was little to hurry up a bit, so maybe it's a genetic thing!!
Anyway - I had been planning on coming back to the thread as I think I had made it sound like she wasn't struggling at all, which wasn't really the case, but it was ( at that point ) very manageable considering what she'd had done and I was thinking she was coping brilliantly.
So it seems for us, the whole day 5-7 thing being the worst, is how it is! Hopefully it'll ease back off again soon.
One wonderful result so far is that she's actually breathing easily at night for the most part, and apart from the odd snuffley noise, the snoring has pretty much stopped ..... YAY!!! So better quality of sleeps ( once the pain has gone ) to come!

FriedFishAndBread Mon 14-Apr-14 09:00:23

Your so lucky with your dh bupa.

My dd has massive tonsils, has always had problems eating, talking because they're that big she can't pronounce words properly and stops breathing in her sleep but as she doesn't get tonsillitis 5/6 times a year (usually once or twice) they won't take them out .

Or they would if I had a spare five grand.

EarSlaps Mon 14-Apr-14 13:44:25

Poor DD bobkate (Blackadder reference?), we did find DS got worse around the week mark (scabs falling off I think), then improved a lot, so I'll keep my fingers crossed for you. The snoring stopping is great but it takes some getting used to.

Friedfish, I know a few children who have had their tonsils removed on the nhs without getting tonsillitis. Sleep apnoea should be reason enough. Our gp was happy to refer us to an NHS ENT, so you should push for referral. I did look into the self pay cost in case we couldn't get BUPA to pay, I think it was around £2200, so rather expensive.

whatadrama Mon 14-Apr-14 14:09:21

Ds has been put on the list for surgery today so we now sit and wait for the date to come through.

He's another one who wakes constantly through the night, snores like a buffalo, constant tonsillitis and food refusal so we know its our only option to help him sad

Can i ask how they put them to sleep, will they put a needle near him whilst awake specifically a cannula?

Ds has a mod/severe language disorder and mild Cp so we wont be able to explain anything to him that he would be able to understand. He also hates hospitals and needles having had lots of negative experiences being treated for meningitis followed a couple of years later by glandular fever and pneumonia.

I'm scared we're going to freak him out especially because we also wont be able to give him pain meds after because he has massive oral sensory issues and wont allow anything past his mouth.

Any reassurance or words of advice will be welcome. He's 6 now so we could hold off and see if he grows out of it by 9/10 years old.

bobkate Mon 14-Apr-14 21:42:00

friedfish I think we must have been quite lucky as our DD hasn't had lots of bouts of tonsillitis but I was pretty pushy with the GP to get a referral and when the consultant took a look and said it would be of benefit to her to have them removed it was such a relief. I would really push if you feel it would be of benefit to your DD.
earslaps ( yep Bobkate is a sort of blackadder reference...and hence why also bob is the name of our dog smile ) She's been very up and down today, veering between utterly distraught and beside herself with the pain to running around sword fighting with her sis 5 mins later. Still, we're on day 7 so hopefully we'll be on the way down again soon! Oh, and it's really weird the no snoring thing isn't it...keep checking her chest is moving she's so quiet at times!
whatadrama with my DD they put some 'magic' cream on the tops of her hands when we first got there. Then it was wiped off after 45mins. When it was our turn to go, we walked to the little room where they looked at her hands to see which had the clearer vein I guess.
She then sat on my lap with her arm behind me. I really cuddled her into me - so much so I didn't even see what was happening. One of the student nurses was great, really chatting away to DD to try to distract her. I really don't think she saw a needle, I certainly didn't. She obviously felt the cannula going in and started crying at that point, but the anaesthetic must have gone in pretty quickly after as the whole thing went by in a flash. The woman who gave the anaesthetic had come round to chat to us beforehand so I'm sure you could let them know about your DS's needle dislike and request it's not waved about in front of him.
We had a pre assessment appt where we could ask any questions...I would see if the same applies to you, then at least you can find out what their procedure is and if they can suggest ways to make it easier for your DS to process/cope with. I would also make sure you ask about how you can give pain relief after - there's no way my DD could have coped with the pain without regular pain relief - more so in these last couple of days - and so I think you'd really need to work that out before you go ahead. Good luck!

EarSlaps Mon 14-Apr-14 22:55:11

Yes, it was magic cream here too. DS was playing a new Lego game on the iPad and didn't even notice the cannula going in. Then they flushed in some saline then the anaesthetic. I think some hospitals can use gas, but not sure if they can for tonsils as they can't keep a mask on obviously.

Agree that you need pain relief. Not sure if you could try suppositories or if that would be worse? They are very strict on keeping up the regular pain relief.

DS1 (just turned 4) had his op on the 31st. It went well, and they decided to take his adenoids out while he was under as they were also large.

They have play specialists at the hospital DS was at, and are great at explaining procedures, and distracting.

They used the 'magic cream', and he didn't notice the cannula going into his hand at all. Like others have said, one of the anaesthetists had DS in a little hug, with DS's arm around his back, while they found Wally together in a book. Weirdly, they gave DS gas after they put the cannula in, so that was what knocked him out.

He was very upset when he came round - crying hysterically sad I think it was a combination of being confused by the drugs, and overwhelmed by the situation. He ended up ripping the cannula out - not because it was especially painful, just because he didn't like it there. He's the same with plasters, etc. In the end, the iPad we brought with us calmed him down.

By the time he was wheeled back down to the ward he was calm. He saw the playroom was open, insisted on going in, and staggered around (drugs in his system) playing while DH and I tried to keep up/stop him bouncing into things. Within the next hour, he drank and ate 3 biscuits and a full lunch. He then ate 2 sandwiches and another couple of biscuits.

As he had sleep apnoea, he had to stay in overnight. It was a difficult night, mainly because he kept waking up and discovering he was attached to a monitor. He'd pull it off, the alarms would go off, repeat.

Now, 2 weeks later, he is almost completely recovered. He is so silent at night that it's a bit scary though!

DS still thinks that the hospital is great - he associates it with toys and fun, rather than pain or discomfort.

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