Need emergency assistance

[runikka]

Hi

I dont know if anyone can help us at all. We have a severely autistic child who literally hasn't stopped screaming, lashing out or crying for about three weeks but this has peaked for the last four days solidly without break aside one night of sleep thrown in for good measure. We are at our wits end with two younger children and full time jobs.

We think he might have toothache but will need general anaesthetic for treatment. He has been referred but god knows how long that will take. We have been to A&E twice and been sent home with various anti-biotics/pain-killers/sedatives all of which escalate the problem or have no effect.

We just do not know what to do. Having spoken to an emergency dentist, community paediatrician, dentist, gp, hospital paediatrician twice they have ruled underlying bugs and illnesses but not really commented on the autism. So, basically we are left to deal with him as he is.

I have tried to look for an out of hours social services number but there isn't one. I have tried a mental health helpline but again there is no answer. We are in west sussex and extremely desperate.

[lisad123]

take him back to A&E, if this isnt his normal behaviour its not fair to leave him in pain.
There will be an out of hours SS line but they wont be able to do much tonight.
Does he like music? the bath? driving in the car? Whats his obbession? Use it. TBH in this case if it meant siting watching a dvd till 2am, I would try that. Has he got school tomorrow? If he has, take the day off, get some sleep.

[runikka]

Many thanks for your reply. That is the problem, a and e cannot find a cause, have prescribed the strong pain med they can, thoroughly checked him over.

He has lost all interest in his toys, normal favourite things (trampolining), hardly eating, seems disorientated, frightened by something, agitated.
School sent him home today because they cannot cope with him like this :(
I think that has escalated the problem for us, because yes, it was the time to get some sleep but there is the work issue too...:(

[lisad123]

im sorry but A&E should not be discharging a child that is clearly in pain without knowing whats wrong, Autism or not. WOuld they do the same to a mute adult? no.
If you feel his in pain, take him back and refuse to go until they work it out. Has he got a communication aidd? PECS? Photos?

[runikka]

I think from the gist of the visits, they feel they have sent us off with plenty of options to give pain relief. Our concern is that the pain might not be a physical pain but something torturing him mentally, something is stressing him out so much that he cannot calm down. It is like he has woken up one day and cannot find any comfort in his surroundings. Toothache might have been the initiating factor but it should really be under control.

[mariamagdalena]

Do you know where his teeth are likely to be treated? Cos that's the A&E dept to attend if you do end up going back. You could encourage general A&E to call a paediatrician by saying he's young, he's complicated, he's autistic, how can you be sure it isn't [inset scary disease of your choice]. And if he is an inpatient, they could give really strong painkillers like morphine if need be.

The other option is call the GP out of hours service giving his weight, and get them to calculate the absolute maximum dose of painkillers he can take without being poisoned (and remember he could have ibuprofen, paracetamol and codeine together). That should get you through till tomorrow when you can see your own GP and find out which hospital secretary you can phone twice daily till they lose the will to live and somehow force their boss to agree that your ds jumps immediately to the very top of the queue.

I also found this: West sussex children's services
'At all other times, including nights, weekends and bank holidays, contact the 'out of hours' emergency social work team: 01903 694422'

hth

[sneezecakesmum]

A&E can only check him over for physical causes regarding why he is so distressed. I take it they've checked his blood, urine etc. If they ruled out physical causes and its teeth related they just can't help. I think if you feel its dental then its the dentist and dental hospital you should be bombarding with calls because its shocking to leave a child like this. Is there a health ombudsman, local MP? you could get in touch with. Your PCT? I'm assuming he is of an age where he could have toothache. If it was an acute abdominal problem (more common in children than chronic abdominal pain) it probably would have manifested itself by now as in burst appendix. Toothache is notoriously resistant to standard pain relief. You all, especially DS, must be so exhaused.

[sneezecakesmum]

Sorry x posted and didn't take into account psychological distress causing all you describe. Also have never seen a child medicated with morphine for any length of time while waiting for a dental GA, it is strictly short term use. tbh until they have ruled out dental, then other physical causes, they can't look at psychological causes.

[salus1]

I feel for you, it must be a very distressing situation for you all, your poor ds. I had an abcess last year it was four days of pure pain, I cried all night once everyone was in bed and that was on max painkillers.

Has a dentist checked his teeth to determine if there is a dental problem? if you already have and are waiting for an appointment at the hospital I would call them and explain this isn't a chronic problem but an acute situation your ds needs to be seen tomorrow.

[salus1]

*and treated

[Triggles]

Yes, I would have to agree that they need to find the problem and fix it. It's obviously something acute and persistent. When you say A&E couldn't find any physical problems, did they do bloodwork and urine testing and all? And then dental needs to be checked. Leaving a child in pain is simply not on, especially when they are not even certain what is causing that pain.

This must be so stressful for you - and your DS.

Just because he can't communicate the details doesn't make his pain or distress any less. It needs attention, and they need to investigate further.

[runikka]

Thanks again for replies. Our son doesn't use any means of communication other than gesture. He has very limited pecs but still early stage and cannot discriminate. The community dentist has his referral but as yet we haven't been able to find out which one it is to chase directly. He is currently off pain relief as one of them is making him psychotic in mannerisms. Our paediatric is off today and despite pleading despair we simply cant seem to get to see anyone else. Waiting for our social worker to call but have been told she might also be out. We just need someone in the system to take this seriously.

[starfishmummy]

runikka- no advice to offer above what has already been said. Your poor ds, and poor you too.
Hope you get some help today.

[bigbluebus]

I know how you feel watching your DS in pain and no one taking it seriously. Had this issue with DD in the past when I was convinced she had toothache but she couldn't indicate where pain was. Turned out she had an abcess under a tooth & other teeth likely to be causing pain. Waited 2 weeks to be referred to dental dept at childrens hospital (50 miles away) as local dental team refused to act due to her complex health needs. Then had further 2 weeks before op was carried out. Fortunately (for us) DD is not autistic and doesn't scream but it didn't make watching her in pain any easier - and it made trying to convince dentist & doctors that she was in pain v difficult.

Your DS is not screaming for no reason and if you believe he has toothache - then he probably has - you know him best! Has anyone been able to look at his teeth to establish if this is the likely cause? If not - why not? Go back to A&E and demand that DS is seen by the dental team immediately. Until they rule out all physical causes you cannot run with the psychological possibility. Toothache is not cured by painkillers and severe toothache will not be
relieved by them either.

Hope you get to the bottom of them problem soon and get your life back.

[runikka]

Well today we have seen a dentist and it seems there are just some tiny holes and a slight wobble. It will need treatment under ga but shouldn't be causing more than minor discomfort. He ivory though so we are going to treat with bonjela. However have managed to speak to paediatric who thinks more is going in the line of mental anguish so has prescribed respiridone?(sp) however After a slightly calmer day our little boy took it and seemed to rapidly decline into full meltdown. The side effects don't seem to mention this so we don't know what to think.

[runikka]

Ivory = very sensory

[sneezecakesmum]

I used to work in A&E and there is no such thing as a dental team in most A&E departments - sorry - I wish there was. Dentals are just packed off with antibiotics and pain relief (if they are lucky). Thought I'd better mention this.

I have looked up rispiridone for you - I can give you a link to the dr's info sheet if you like but have copied and paste the info on emotional stuff:

Psychiatric disorders :-

Very common
Insomnia

Common
Anxiety, Agitation, Sleep disorder

Uncommon
Confusional state, Mania, Libido decreased, Listless, Nervousness

Rare
Anorgasmia, Blunted affect

It could account for his emotional state?

For the teeth sensitivity the new colgate sensitive 'pro relief' is supposed to seal the little nerve endings which are exposed with holes. Bonjela is good for gums but a fairly short acting local anaesthetic effect.

Poor DS it sounds like he may be overwrought with the sensory stimulation and the disturbed sleep. Its so incredibly difficult with children who cant communicate their needs like this.