update for those who may remember us

[zonedout]

i have posted in desperation several times about my ds1 who is always (at least once a month, often more) getting ill with fevers of over 41, ear infections, stomach bugs, tonsillitis, you name it. and how inbetween he is always pale and tired with very dark circles under his eyes and super super skinny.

i was so worried about him coping with starting reception this september as 3 hours at a very relaxed nursery 4 mornings a week was rendering him flat out. i demanded referrals and the gp repeatedly told me that all kids get ill, it's quite normal. but i have enough friends with children to know that what was happening with my son was quite extreme.

so, 3 days into starting reception he came down with his 13th bout of tonsillitis since november (fever 41.2) and i finally got my referral to a great ormond street paed. alongside the dodgy tonsils it turns out my little boy is suffering from very severe obstructive sleep apnoea and has been booked in for removal of tonsils and adenoids the week after next.

apparently sleep apnoea can cause daytime exhaustion, night sweats and failure to put on weight, the 3 symptoms i have been most worried about over the last year.

so i am left with a massive sense of relief mixed with a little anger that it had to take so long to get my ds the help he needed and upset that he is having to miss another 2 weeks of his first term of reception together with a big fear of the operation.

i just thought this could possibly help someone going through similar and fighting with doctors who will just never learn to listen to a mother's instinct.

fingers crossed this op will be the answer to ds1's problems and all will go smoothly and successfully!

not had the fight but my DS 4 had tonsils and addenods out 3 weeks ago because of them obstructing his breathing. Not full on sleep apoea but bad enought for his chest to have sunk in a bit.

He sleeps like a baby now we can hardly hear him breath.

He was great with Op - was upset when he woke up from surgery but had a sleep and then woke up and ate a ham sandwich. Had a dip when the theatre meds wore off but otherwise it was manageble (stayed overnight).

The first week at home was difficult. The pain actually get worse as the week goes on (day 4-7prob the worst).

Make sure you have lots of capol and ibuprofen. We were giving the max 24 hr dose and he needed it. Had to write down every dose and time to keep track. They need pain relief every 4 hours (sometimes less).

It looks like my DS2 will be next and the 2 things I would do diferent are:

as them about morphine in recovery - some of the kids got it some didn't (all the morphine kids threw up the evening after surgery including mine!). If he doesn't need it try to avoid.

Seriously look into getting parcetmol suppositories for night time. We had a week of bad nights where DS woudl wake with a very sore throut and get in a total state about swallowing the medicine. Suppositories woudl have been better and less distressing for him.

It took us 2 days to work out the orange neurophen hurt his throat. We switched to strawberry and all was fine!

I don't meant to frighten you with this info. I wish I had knwo this 3 weeks ago. After 10 days DS was fully recovered (if a bit tired0 and he is completely back to normal cycling swimming etc. It was really worth it. Lots of cuddles and treats are the order of the day.

Should add that I was worse that DS1 - i think they think it is all a bit adventure. The staff at the hosiptal will be great. Whilst we set the scene the week before with some going to the hospotal books out the libary, we only told my DS 2 days before the op and only really started talking about the op the day before. He was quite excited, as he got to go in his Pjs and things like that. We played up all those aspects - like the nurses said he could eat anything he wanted and he wanted sweeties for breakfast and we said yes he could.

I kid you not, the first night he kept waking up asking if it was morning because he wanted a sweet (so maybe not a good idea after all!) He was up playing in the ward playroom 3 hours after his op.

thank you both so much. pixie, i think we have spoken before on this. i have come across a fair few hospital play specialists with my ds2 but they always make him more hysterical.

amazing, amazing tips much appreciated thank you so much raffiscool. my ds is utterly terrified of blood, pain, hospitals (has witnessed bad things with his baby brother) so am having to tread very very gently and carefully with preparing him. you haven't terrified me at all, forewarned is forearmed and all that! and really great tip re the morphine as my ds had a particularly awful stomach bug this summer and is know really frightened of vomiting so any help in preventing it is great. glad your ds seems to be out the other side now. do you think 2 weeks sounds about right for recovery time off school?

We were told 10-14 days . He prob could have gone back afer 10 days but we waited the 14. He went back on a Thursday so only had 2 days (we thought that would be better and a good ease back in).

He is only is preschool mornings only (it is different here in Scotland). If he is going back to a full day I would say yes take the full 14 days and expect him to still be a bit tired (and precious!) for a few more days after that.

We were told to say at home, no friends visiting, no shopping centers etc in that 10 day period to minise infection. In reality DS was in the garden in day 3 and F
from day 5 I was taking him round the park in his brother's buggy and he was having a little play in the playpark. The second week we were about more but kept outside in the fresh air and he jumped in the buggy when he was tired.

I was dreading the enforced isolation but it wasn't too bad and it seems a small price to pay now for a much more healthy DS.

I really hope this helps your DS become more able to fight things off - it sounds like he has really been through the mill poor mite..

thank you, thank you, thank you. such helpful info. i too am dreading the enforced isolation... neither me nor either of my boys do very well when stuck in the house for more than a whole morning - fingers crossed for some dry weather during those 2 weeks then!

I second raffii's paracetamol suppositories tip, were a life saver here when DS could not swallow from pain. push your dr to get them on prescription though as they cost almost £20 for a pack of 10.

I got some at an out of hours chemist when DS was really bad and nearly passed out with the shock when I had to pay.

Great to hear you've got a diagnosis and good luck with the op. Here's to a speedy recovery and overall improvement in DS's wellbeing.

It will be the little one that is the problem. It is very boring for them and they will start climhing the walls. DS1 will be quite happy and will want to sit on couch watch DVDs and have big daytime naps and do not very much really.

Can you arrange for someone to take your DS2 out especially in the first week? Do you have any family etc nearby who could take him out in the afternoon? Can he do extra days at nursery, childminer, playgroup if you have those options. I would set something up now and that will help next week when you really are stuck in the house those first 3-4 days.

funnily enough i have some of those suppositories in the house as calpol used to make ds1 a little hyper as a baby and i gave those to him instead (on my finnish sis-in-law's recommendation as that seems to be the normal way of giving painkillers to children in most other countries!) i wonder what dose he needs now though... will have to check the label...

ds2 is just at home with me at the mo so no nursery/childminder option but iwill try to find someone he likes to take him out a little each day. but you are right, ds1 is happy to mooch at home in front of cbeebies even at the best of times while ds2 starts chucking himself off high surfaces after a while and definitely needs to get out...

thanks again for all the fab ideas and well wishes