00:09 i'm charlie and on a tuesday afternoon
00:12 and saliva control is something that
00:20 for virtually the whole of the time as a
00:22 consultant as dan said i've been a
00:23 consultant now for about 22 years
00:25 in in the field of childhood disability
00:29 and my old senior speech and language
00:32 therapist colleague and i set up a slide
00:35 in the early 2000s because it really hit
00:38 us hard that we were seeing children in
00:41 a variety of clinics whether it be my
00:44 physical neurodisability clinic or helen
00:46 with her sort of feeding
00:48 and swallowing clinic that families were
00:52 feeding back to us time and time again
00:54 about how much of a physical and
00:58 problem there was associated with uh
01:01 children who had problems with saliva
01:04 and as time has rolled on and
01:07 as we have developed our knowledge in
01:11 very much struck that um as a society
01:15 we're pretty good with uh coping with
01:19 to be in a wheelchair is relatively
01:22 and and exceptionally well tolerated by
01:27 the wider population now and even if
01:29 you've got seizures you're having a
01:30 seizure and you're a child and
01:32 that the the the wider society can cope
01:36 but as soon as you put a child
01:40 a bib around them um or a
01:43 large tea towel and
01:47 they start smelling of stale saliva
01:50 then society as a whole is still
01:52 absolutely horrific
01:54 um in their way that they uh cope
01:57 and deal and treat uh with children with
01:59 saliva control difficulties so that's
02:01 one of that's the main reason why i've
02:05 an interest in this area and as i said
02:09 years plus we've been running a specific
02:14 in saliva control difficulties
02:17 so i'm just trying to move on click away
02:20 so this all sort of came to a head
02:24 i was uh chair and led up the nice
02:27 cerebral palsy guideline um that we
02:32 uh just over three years ago now and we
02:34 looked at a variety
02:36 of we were allowed to ask a number of
02:40 about cerebral palsy one thing we
02:42 weren't allowed to ask about
02:44 was the problems of movement and posture
02:45 because they felt that nice felt that
02:47 that had been covered already
02:49 in the previous spasticity guideline so
02:52 very clearly on the comorbid challenges
02:56 when we were thinking about the
02:57 management so we thought about the
02:58 clinical comorbidities
03:00 chest health gut health developmental
03:04 of communication mental health which
03:08 but also these challenges of functional
03:11 and within the managing functional
03:13 issues we focused very much on
03:16 the four areas of eating drinking and
03:20 pain discomfort sleep disturbance
03:23 and saliva control so saliva control was
03:27 we had uh two questions out of 20
03:31 that we're allowed to deep dive to look
03:33 at the evidence base
03:34 on how you assess and how you manage
03:38 children with neurodisability and saliva
03:41 control difficulties so that's the basis
03:44 of where we are uh as i said uh
03:47 um uh i will go over much of this
03:49 rapidly because this is bread and butter
03:52 uh but when i'm talking with
03:54 pediatricians in particular
03:55 i need to spend a relatively long time
03:59 explaining what is normal
04:01 before i start thinking about what is
04:04 so i'm going to spend a little time
04:06 talking about saliva control and the
04:08 that i deal with in the pediatric
04:11 population the young adult population
04:13 and also the solution
04:15 in what we do with regards to how we
04:18 how we consider we're going to help the
04:22 their sileria so saliva we
04:25 as you are very aware produced between
04:28 half a liter and a liter of saliva daily
04:30 that's something that always shocks
04:32 uh the parents when you talk to it they
04:34 don't think that this is a that we are
04:36 so much uh during the daytime again as
04:39 we are aware it's under
04:42 the autonomic nervous system as
04:43 controlled and it's parasympathetic
04:45 on the whole in terms of the drive
04:49 you not you see it on a regular basis
04:52 i look at it an ultrasound scan so i
04:55 of the salivary glands but they are big
04:58 they are not small things
05:00 uh and we have uh the sub maxillary ones
05:03 and we have the parotid ones
05:05 and the thick mucous secretions at rest
05:08 are predominantly created by your
05:10 submandibular plants
05:12 and then when the stimulation comes from
05:14 eating and drinking
05:15 and oral activity you get the more
05:17 watery serous secretions
05:19 created by the parotid
05:22 and that is a terrible picture uh
05:25 showing the areas are
05:26 that on the carotid side of things you
05:30 and then underneath the angle of the jaw
05:32 you've got your submandibular and then
05:34 more anteriorly you've got your
05:35 sublingual uh and i
05:37 you know though i look at them on a
05:38 weekly basis with my ultrasound scan
05:41 uh i'm always amazed at quite how large
05:44 uh uh um particularly when you've not
05:48 got your normal function
05:49 of uh uh talking uh chewing and
05:54 why do we have saliva we all know again
05:56 that they're really important in keeping
05:58 your mouth healthy uh and that is there
06:02 uh to try uh in a bacteriostatic
06:06 um as well as facilitating eating and
06:09 initiating carbohydrate digestion
06:12 so there are specific reasons why we
06:14 have saliva so to switch it off
06:17 all together isn't necessarily the right
06:19 thing because there's an awful lot that
06:21 you need particularly in oral hygiene
06:23 that's really really important uh with
06:28 we swallow uh about once a minute when
06:32 uh um as an adult we swallow about 600
06:36 uh and as we we stated the vast majority
06:38 of the times when we're awake
06:40 um when you're thinking about
06:42 abnormality as i said i'm doctor dribble
06:44 when you're looking at
06:46 normal versus abnormal developmental
06:49 there's very little out there on looking
06:52 based norms but on the whole
06:56 from a a developmental pediatric
06:59 it's relatively normal to have anterior
07:02 cylinder ear or coming out the front of
07:04 until around 15 to 18 months so really
07:07 you shouldn't worry too much
07:09 about drooling and dribbling up until
07:13 unless you've got problems with
07:16 and it going down and causing aspiration
07:21 drooling is still relatively common
07:23 before the age of three years
07:24 particularly when a child is eating and
07:27 so it's really that sort of point that
07:29 from a developmental viewpoint you start
07:31 getting uh more interested in how we
07:35 how we should uh facilitate a child
07:38 uh with their saliva control
07:42 so what happens when it doesn't work
07:43 what sort of populations do i see
07:46 and and initially what are the causes of
07:49 uh saliva loss uh and as a neurologist i
07:52 obviously start off thinking about
07:54 neurological problems
07:56 and there are some really rare primary
08:00 problematical uh challenges i don't see
08:02 too many children that smoke
08:05 you know uh but i do see an awful lot of
08:07 children with gastroesophageal reflux
08:10 but complex temporal epilepsy uh
08:13 is a a challenge that we see with
08:15 primary hype secretion ie creating
08:18 too much saliva and also as we'll see
08:22 many of the medications that we use do
08:25 a problem particularly those who we use
08:27 in children with a dystonic
08:29 or a fluctuating motor disorder
08:32 so really the main population that i see
08:36 are children that have secondary causes
08:38 of drooling they don't have any hyper
08:40 but they cannot swallow properly and a
08:43 lot of the problems come from postural
08:46 children that have real difficulty in
08:48 keeping their head out
08:49 and the saliva pulls underneath the
08:53 comes straight out the front so they
08:55 they have real problems with automotive
08:57 the lip closure is a problem problems of
09:00 inter-oral pressure
09:01 and problems associated with uh total
09:05 of uh saliva and as i said that hyper
09:09 salivation problem is really
09:11 complicated uh uh uh in my world
09:15 uh with children with epileptic
09:18 and children with cerebral palsy on
09:19 anti-convulsants particularly
09:22 the benzodiazepines and in your world in
09:26 the problems of tooth eruption dental
09:29 problems problems of not necessarily
09:33 but secretion problems coming from the
09:39 so as i've stated and started talking
09:42 disorders are also a major problem so
09:46 gastroesophageal reflux is a very common
09:48 problem in children with cerebral palsy
09:50 depending upon the severity of cerebral
09:52 palsy it can be anywhere between 75
09:55 and 97 of the children have a problem
09:58 of uh chemical inflammatory
10:00 hypersalivation because of
10:02 gastroesophageal reflux
10:04 i also see an awful lot of children
10:06 particularly with obstructive problems
10:08 from nasogastric tubes now gazing laser
10:11 gastric tubes as far as i'm concerned
10:13 are shocking and really needs to be
10:15 there only temporarily and moved on
10:18 downstream to a gastrostomy tube
10:21 because they cause all sorts of uh
10:24 with the lower esophagus in particular
10:28 uh with stimulation of the vagal
10:32 and direct stimulation leading to
10:37 so overall what is the prevalence of uh
10:40 slide control difficulties my biggest
10:42 population and we'll come to
10:44 our metrics downstream uh in a wee bit
10:48 uh from the population over a five year
10:50 period that we've seen at the evelina in
10:51 our saliva control clinic
10:54 but overall in cerebral palsy somewhere
10:57 and 37 percent of children
11:00 have got a problem with anterior
11:03 but also posterior silaria and the
11:06 biggest study was done by parks and hal
11:09 in 2010 in terms of looking at
11:12 cross-sectional study which set it
11:17 now i don't know how many of you are
11:18 aware of something that we call the
11:19 gross motor functional classification
11:22 when you're talking about cerebral palsy
11:25 really children like chocolate simple
11:28 of talking about your functional
11:31 challenge when it comes to your movement
11:33 so it's it's it's a step-wise scale so
11:37 gm fcs level one are fully
11:40 independent walkers whereas children in
11:45 are totally dependent on others for any
11:50 levels one two and three are independent
11:52 walkers but they get
11:53 more and more challenged in their
11:55 walking and level four are generally
11:58 who are in wheelchairs who either
12:01 or have powered mobility and as you can
12:05 jump is between that power mobility or
12:07 self-propelled group
12:08 and those that are completely
12:12 and those are children who've got much
12:14 less control of their aura motor
12:17 their children on the whole that are
12:21 their children on whole who have poor
12:25 of their head so saliva control
12:27 difficulties in that gm fcs level 5
12:29 population or non-ambulant
12:32 population are are markedly prevalent
12:36 even in that population however uh the
12:38 problems with saliva control do tend to
12:42 uh particularly uh decreased
12:44 post-secondary eruption of dentition
12:47 in the uh young adolescent population
12:50 and that's why when you'll come and see
12:52 on our sort of algorithm of treatment
12:55 we tend to think about more
12:58 long-term interventional treatment
13:01 options such as surgery
13:03 in the post-adolescent population as
13:06 being that the appropriate thing
13:10 what are the consequences so this is
13:12 where i came from when we set up the
13:14 saliva control difficulties as it said
13:16 there are a variety of medical and
13:19 challenges for the child and their
13:21 family with regards to drooling
13:23 and dribbling and anterior asylum so i
13:26 at the extreme of the situation from the
13:30 i was seeing children who had gone into
13:32 pre-renal renal failure
13:34 uh from dehydration i was being referred
13:36 children from throughout the united
13:39 uh who had gone into renal failure with
13:42 the level of saliva loss but more
13:45 just as problematical in many ways the
13:48 the skin breakdown the irritation that
13:51 uh real problems associated with seizure
13:55 uh because of loss of of the homeostatic
13:58 but also problems with seizure control
14:02 many of the medications that we use and
14:04 again we'll come to that in a wee bit
14:06 but this is social quality of life
14:09 that a number of studies have picked up
14:11 on uh with a degree of social isolation
14:15 and the family let alone if they use uh
14:18 augmented uh augmented communication
14:22 uh you can fuse i mean you don't want to
14:24 be dribbling all over your computer
14:27 and damage to books damage to school
14:29 works so there's real problems
14:30 associated with both social
14:32 and medical problems so when we looked
14:35 at the nice guidelines we then focused
14:38 on initially on assessment there are a
14:41 whole variety of research measures which
14:44 are of very little practical use in a
14:49 so there are these elements of chewing
14:52 on gauze for a minute
14:53 using a bib weighing weighing bibs
14:56 using a chin cup placing it under your
14:59 chin trying and strapping it in there
15:02 they're all fairly useless but actually
15:05 what really really helps us
15:06 on the whole are the development of
15:11 scales so quantifying qualitative
15:14 problems that the child and the family
15:17 have and these are the two
15:18 that we use in clinical practice so
15:21 there's a drilling impact scale
15:23 uh set out and read at al in 2009 and
15:27 the drilling rating scale
15:28 which is now the modified drilling
15:30 rating scale of thomas stone allen
15:34 um the drilling impact scale is a score
15:38 there are ten factors that are scoring
15:41 and ten in terms of the uh
15:44 uh impact uh in each area
15:47 of qualitative challenge so we we think
15:49 about the frequency of saliva loss
15:51 the severity uh the numbers of bibs or
15:56 per day 1 10 is the maximum
15:59 but actually one thing that we sort of
16:01 modify this and we think
16:02 and talk to the families as well on a
16:06 and if a child is getting through 20 30
16:09 40 bibs a day that's a really
16:12 really profound anterior cylinder loss
16:15 you ask about the frequency of skin
16:16 irritation the frequency of wiping
16:20 saliva away from the chin and the mouth
16:23 that child is by the saliva uh and the
16:27 the frequency of wiping saliva off
16:30 and then the two critical ones on how
16:33 much of a problem is it for the child
16:34 what's the impact quality of life and
16:36 what's the impact of quality of life on
16:39 and you get a score out of a hundred and
16:41 you do that pre and post any
16:44 and we do that regularly every single
16:45 time that we see them every three
16:47 six months uh in clinic as well we also
16:50 do the drilling rating scale which is
16:52 terribly simple that's just an overall
16:55 scale uh of severity and frequency
16:59 uh severity out of five uh and frequency
17:03 and again it's just a quali
17:06 of the qualitative problems for that
17:11 so we assess and then from a
17:13 neurological viewpoint we think about
17:16 as i said we do that bibometer how much
17:18 soaking equipment we talk about
17:21 how much soaking of clothes but we also
17:24 other neurological clinical factors
17:26 other neurodevelopmental clinical
17:28 factors problems with
17:29 posture problems with communication
17:31 problems with oral health and dentition
17:34 and the ent side of things obviously so
17:36 we look at physically at their head and
17:39 we look at their mouth tongue and jaw
17:41 movements we think about the other
17:43 aspects of neurology and their movement
17:46 and the speech and language therapy team
17:49 work with will look and think carefully
17:52 about the safety of swallow for that
17:56 so that takes us away from the
17:57 assessment and into the management which
17:59 is the next question
18:01 on uh um uh the nice cerebral palsy
18:04 guidelines so this is
18:05 this is the summation and i would
18:08 recommend you go and have a look at this
18:09 if you not looked at it before
18:10 because uh the nice pathways are really
18:15 if you're stuck in clinic and you
18:16 haven't got an idea you can click into
18:20 of nice on their main website
18:23 saliva control and it'll come straight
18:26 and will give you a clear algorithmic
18:28 viewpoint of how you should manage
18:31 so once you've assessed uh the saliva
18:34 you're then uh considering a variety of
18:37 anticholinergic medications as far
18:39 as the nice guidelines we'll go into a
18:41 little bit more detail
18:43 on our direct algorithm within our
18:45 clinic in a little bit
18:46 but it's really giving you the choice of
18:47 glycopronium bromide
18:49 which is licensed for use or transdermal
18:52 hyacine higher bromide
18:54 uh or a hyacine patch uh which is
18:57 unlicensed for use uh um um or
19:01 trihexyphenosal which
19:02 is a uh antidystonic medication that is
19:07 as well so we tend to use that to try
19:09 and get a bit of a double whammy
19:10 in children with a dystonic or
19:12 dyskinetic movement disorder
19:14 um nice is also a month after we did the
19:18 cerebral palsy guidelines
19:19 come up with its own evidence summary on
19:22 uh oral glycoprone bromide so again you
19:24 can go and have a look at that that's
19:28 um so once you've assessed uh um
19:31 you then think about which tile to use
19:34 if that doesn't work
19:35 you can then consider referring on to
19:38 specialist services
19:39 who could consider whether that's an ent
19:42 or a neurodisability service who've got
19:46 in the use of targeted botulinum toxin
19:50 to try and reduce the frequency and
19:52 severity of saliva control and i'll give
19:54 our own uh background with regards to
19:58 as we go through the uh the protocols
20:05 this is the algorithm that we actually
20:09 within the nice guidelines and it comes
20:11 from uh this seminal paper by fair
20:15 uh in archives disability in childhood
20:18 on the management of drooling in
20:21 and this goes through what is the sort
20:25 sieve of treatment options uh um
20:29 ending up with surgical on that side so
20:32 we looked at a five-year population of
20:35 children referred in
20:36 to our saliva control clinic and over
20:40 that period of time from may 2013
20:44 we had uh just under 425
20:47 new patients of which the majority
20:51 half were children with a severe
20:56 a the main other areas that we had
20:59 were children with worsted drought or
21:03 a almost like a bulba a pseudobulba
21:06 palsy associated with
21:08 almost a cerebral palsy of your bulba
21:14 a next large population of children with
21:16 autism angelman and behavioral disorders
21:19 a really challenging group for us to
21:20 manage uh a variety of genetic and
21:23 syndromic problems like
21:24 rhett syndrome lesch nyan syndrome again
21:27 children with challenging uh
21:30 difficulties around the aurora motor
21:32 chilling children with poor or remote
21:36 and a lot of children with just
21:39 an isolated epileptic encephalopathy
21:44 so our approach is to go through the
21:46 protocol so initially
21:48 if it's appropriate and you'll see how
21:50 rare it is appropriate
21:52 you can consider aura motor exercises
21:56 children needs to be able to work
21:58 closely with a speech and language
22:00 therapist for 10 to 15 minutes
22:03 every every single day in a one-to-one
22:07 with a clear focus and then go and work
22:09 on it for two hours by themselves
22:11 so there is a very small population
22:14 within that 420 that we have come across
22:16 that we've been able to go and say go
22:18 and work on it on a clear
22:20 or remote exercise program um
22:24 there is no evidence for vibration
22:26 therapy there is no evidence for icing
22:29 but as i said there is some
22:32 evidence for specific myofunctional
22:35 therapies such as the
22:36 the swallow right program and this is a
22:39 sort of modification
22:41 of the uh swallow white program which is
22:44 trying to get a child
22:45 to learn where the end of the tongue is
22:49 and to be able to close their lips
22:53 and to move the saliva saliva back
22:56 through the auramoto cavity and swallow
22:59 so it's really re-educating and teaching
23:01 what should be an automatic thing for
23:04 the child so it's very rare that we get
23:06 that and it's really a child
23:08 uh with a good developmental age they've
23:11 got to be able to be
23:12 cognitively able they've got to be able
23:14 to imitate the oral movements that are
23:16 shown to them and they've got to be
23:18 compliant with a regular program
23:20 and even then out of the 425 223
23:24 we only had 10 children that we could do
23:26 a myofunctional therapy
23:28 and and in all these slides what you'll
23:30 see is that drooling impact scale
23:32 out of a hundred before intervention
23:35 drilling impact scale
23:36 out of a hundred afterwards and also the
23:39 drooling rating scale
23:41 changes over a period of time and just
23:44 because i'm really interested in because
23:46 quality of life for the child and the
23:48 family is vitally important
23:49 you'll also have the quality of life at
23:51 the end so for all these treatment
23:53 options we'll give you
23:54 the breakdown so you've improved it by a
23:59 so as far as nice is concerned that's a
24:02 good minimum clinical
24:03 import importance and difference so they
24:07 think about it because you're actually
24:09 improving it they're improving the dis
24:12 which is outside the range of chance
24:17 so the next one to consider is is
24:19 behavioral treatment so again
24:21 that's an awful lot of retraining
24:24 uh the child uh and again the results of
24:28 are better if the child is more
24:31 and uh and milder drooling and that's
24:33 when you can get the psychologist
24:35 involved which we have done
24:36 on a relatively regular viewpoint we
24:39 tend to do it together with the
24:41 myofunctional therapy program
24:43 uh so we haven't actually got a
24:46 the most simple things that you need to
24:49 with the the children and family however
24:51 are real conservative measures
24:53 such as getting them to dab the saliva
24:56 rather than wiping um because if you
25:00 across the mouth you will increase the
25:01 saliva loss whereas if you get them to
25:05 an element it doesn't stimulate the
25:07 saliva loss as much
25:09 also much more socially acceptable for
25:13 children young people particularly if
25:14 they are more cognitively able
25:16 and in mainstream education is using
25:19 toweling wristbands
25:20 rather than bandanas or bibs
25:23 and they can roll and they can dab the
25:25 wipe and change the toweling wristbands
25:28 so they're simple conservative ways of
25:32 of dealing with it also the avoidance of
25:35 such as sweet foods such as chocolate
25:38 also have an awareness that if they have
25:40 an upper respiratory tract
25:42 infection if they've got an ert it's
25:44 going to be it's going to be more
25:46 for them there's an area of interest on
25:49 alternative therapies such as
25:52 tongue and uh uh binding and taping
25:57 uh um not clear evidence base but it's
26:00 area of of interest uh uh and one that
26:03 we need to have an awareness of
26:08 my first job back in the the mid 1990s
26:11 consultant was at chile heritage and at
26:14 we developed a saliva control interest
26:16 because we had a fantastic dentist
26:18 who was really good at developing
26:23 now intraoral devices are
26:26 they have a limited function but they're
26:29 in some children and again what they're
26:33 is stimulate a normal swallow
26:37 so they are a modified brace with a
26:40 variety of ridge and bumps over the top
26:43 and then a loop at the back and so what
26:45 it encourages the child
26:47 is to run the tongue back along the
26:51 and then it stimulates the swallow when
26:54 anecdotal reports of them being useful
26:57 still uses a chili heritage we haven't
26:59 got a dental department here
27:01 that are terribly interested in
27:03 developing but you know
27:04 just to give you the full element of all
27:07 treatments and approaches to management
27:09 it's something that you can consider so
27:12 that leads me to my medical world
27:15 and the approaches to management now
27:18 there was a lot of look on anti-reflux
27:21 for uh uh the treatment of saliva loss
27:24 and as you'll see and remember from what
27:26 we were saying in terms of the
27:28 the problems from the neurological and
27:31 the problems from stimulation the
27:34 actually untreated gastroesophageal
27:36 reflux will increase
27:38 your saliva control so you need to think
27:42 not just on hitting it straight on but
27:44 if there is a causation
27:46 if there is an ent causation if they've
27:48 got problems associated
27:50 with uh upper airway an ideal an awful
27:54 antihistamines and in particular the use
27:58 spray anticholinergics and the use of
28:00 fluticasone nasal spray
28:01 if there's an awful lot of congestion in
28:03 the upper airways that's also leading
28:06 to a real problem with saliva loss
28:09 and secretion challenges the
28:12 anticholinergics as i said we
28:14 we talk about in great detail in our
28:18 you've got those pre-anaesthetic agents
28:20 whether it's hyacine
28:21 atropine that actually drops are fairly
28:24 adults and seem to be equally
28:29 and the one that we've got the greatest
28:30 experience of uh is glycoprone and
28:33 but also the elements of anti-dystonic
28:36 medications the use of trihexy phenotyl
28:38 and as i said using the inhaled agent uh
28:41 inhaled anticholinergic agent of
28:44 or ipotropin bromide which is a
28:47 anti-asthma medication
28:49 which main side effect is drying up oral
28:52 and we use that in our own treatment and
28:56 uh both in the nice guidelines
28:59 also in that article from 2011 from
29:03 uh helen and me uh give you dosage
29:06 of uh glycopronium bromide uh
29:09 trihexyphenodal and itotropin bromide
29:12 uh and as i said salinar is now the
29:15 uh formulation of glycopronium bromide
29:18 in the united kingdom there are
29:20 others coming out and they will give you
29:23 as to the dosing table of that
29:27 the problems that we see funnily enough
29:29 with anticholinergic medications
29:31 are anticholinergic side effects so
29:33 there is irritability
29:34 there's sedation main problems that we
29:37 tend to see however
29:38 constipation urinary retention
29:41 in an extreme viewpoint problems with
29:45 and also if you use them for a long time
29:48 particularly higher seen patches
29:49 a lot of effect so looking at our
29:53 initial appointment
29:54 of those 423 patients that are referred
29:57 as the tertiary center for saliva
30:00 control difficulties
30:01 in in childhood 157 of our patients
30:05 had already had a prior use of
30:08 of which the majority the vast majority
30:11 had used hyacine patches
30:13 now the main side effects that we've
30:15 seen in that population
30:17 were a skin reaction a
30:21 markedly problematical skin reaction
30:24 with hyacine patches
30:25 and a real challenge of worsening of
30:27 seizures so much so that some children
30:30 had never had a seizure until they
30:32 started to be treated with a hyacine
30:34 and then as soon as the child was
30:36 stopped being treated with a hyacine
30:38 uh the seizures went away with regards
30:42 to our hypocyloria and epilepsy
30:44 population there's just a quick thing
30:45 down there at the bottom
30:50 and clonazepam are medicines that really
30:52 switch the taps on and you have to have
30:56 glycoprotein bromide uh um in terms of
30:59 side effects constipation is the main
31:01 but it's much less problematical at the
31:04 side effect profile
31:05 of glycopronium in comparison to hyacine
31:09 and these were the children that we used
31:11 in terms of thinking about
31:13 outcomes so we initiated glycopronium
31:17 we initiated trihexy fenidal in some and
31:20 we initiated ipretropium bromide
31:23 as an inhaled agent and they may well be
31:27 but these are before that child was
31:29 treated with that treatment option they
31:31 might be on something else as well
31:33 and then uh in review at around three
31:37 afterwards so you can see on the whole
31:40 the oral medications
31:42 improve the drilling impact scale by
31:44 around a factor of minus 20
31:46 so about twice as good as the inhaled
31:49 and also twice as good as the
31:52 therapy viewpoint and again they are
31:57 at about double the amount as he inhaled
32:00 myofascial training
32:03 so when that's not enough you're going
32:06 to think about botulinum toxin
32:07 injections you can think about it
32:08 okay it's fairly widespread in
32:12 its uh usage there are
32:15 clear international guidelines
32:18 on how you should be doing it it is the
32:21 most potent neurotoxin known to man
32:24 i know the man who injects it across
32:28 bottom on a regular basis happy in his
32:33 so it's used for cellulite i know the
32:35 man who does it in nicole kidman's face
32:37 on a regular basis but it's far more
32:45 discomfort muscle spasms in muscles
32:48 and to reduce the amount of saliva
32:53 you should be always contemplating using
32:57 increasing cohort of children that don't
33:00 sedation because they don't like it
33:04 dan um and the rest of the ent
33:07 team are fantastic at facilitating and
33:11 to join them on an ent list and do this
33:14 from time to time in
33:17 the anaesthetic room in children with
33:19 profound behavioral disabilities so that
33:21 autism population in particular
33:23 where you can't get near them with a
33:25 needle so sometimes you need to do it
33:27 under general anaesthetic but that's
33:29 to be honest it's about one child a
33:32 out of about a 150 200 a year
33:37 always use up sound guidance and i'll go
33:39 through my technique
33:40 we use really low doses we use botox
33:44 because it spreads less xeomin seems to
33:48 seem to be so that those are types of
33:49 botulinum toxin type a
33:51 so xeomin and botox seem to have a
33:54 relatively good safe
33:56 i have heard of problems and i do not
33:59 dysport because it tends to spread a
34:03 so safety is vitally important we do my
34:07 is single injection to each uh saliva
34:11 and really really low dose and touchwood
34:14 and believe me i'm touching wood
34:16 i have not had any problems associated
34:20 other places have that tends to be when
34:22 you're doing multiple injections across
34:25 and when you are doing uh
34:28 much higher doses i think safety is
34:31 all important so i keep it really really
34:35 and this is my approach so this is one
34:37 of my gorgeous young adults so she's not
34:40 and doesn't need any sedation but i mark
34:44 i look with the ultrasound scan
34:45 beforehand see where the saliva glands
34:48 are i will put lidocaine cream
34:51 over the side of of of where uh one
34:55 and both submandibular glands are leave
35:00 i'll then get my ultrasound machine out
35:03 here we are you can see uh um that uh
35:07 gray blob in the middle of anything and
35:10 it's normally about three or four
35:14 by about two or three centimeters deep
35:17 so always look and see because you will
35:21 that some saliva glands are not where
35:23 you expect them to be
35:25 and there is an awful lot of dodgy
35:26 material in terms of
35:28 nervous and blood supply there
35:32 that you don't really want to be hitting
35:33 so have a little look
35:35 check where you're going check whether
35:37 you think if you want to
35:38 mark if you're in theaters
35:41 you can use your ultrasound scan and
35:44 you can use that that we go along the
35:48 of uh um the uh the probe
35:52 so that you can see the needle going
35:54 through and into the saliva gland
35:57 i tend to find that actually if you do
36:00 in an awake child what you need to do is
36:03 to gauge where you are
36:04 with the ultrasound scan then do the
36:06 injection otherwise you will be focusing
36:09 on the needle and that is when you can
36:13 too deep and i have got a colleague
36:14 who's had a side effect
36:16 associated with focusing on where the
36:18 needle is rather than focusing on the
36:21 uh um so focusing on the ultrasound
36:24 rather than the child
36:25 and the needle so that's the way that i
36:28 do it and that's the way that i've
36:32 and then there's the protein which is
36:34 about one centimeter deep
36:37 and it's about one centimeter in front
36:40 that i tend to go for and i tend to get
36:43 a good effect and a good benefit at that
36:48 so then i'll go in clinically uh it's
36:51 about the size of a plum
36:52 underneath the the angle of the jaw i
36:55 i i can basically run up and down the
36:59 because what i do is i will anchor
37:03 with one finger at the angle of the jaw
37:06 and then i will leave one fingers worth
37:08 gap before i then anchor under the jaw
37:12 other finger i will then have as you can
37:15 the syringe into my athena evidence
37:19 and and the child can move their head
37:22 and i can still be comfortable that i've
37:26 that that uh needle in the gland
37:29 uh and it's not causing any potential
37:32 when i get to the parotid i will rest my
37:36 of that individual's face and they can
37:39 move and the needle end does not move
37:44 but that's basically just because i've
37:45 done a gazillion so what are the
37:47 problems with botulinum toxin injections
37:50 there is some evidence you can get
37:51 thickened saliva as you can with any
37:54 there is some evidence that if you go
37:56 particularly if you go high dose
37:58 and you go multiple things that you can
38:00 lead to swallowing difficulties as i
38:02 touch base i've never had any problem
38:05 associated with that
38:06 and that's the real reason why we are
38:08 concerned about spread
38:09 and you i tend to stick to ones where i
38:13 comfortable that the botuline toxin
38:17 is manufactured in such a way that that
38:19 is is is limited in potential
38:22 over a period of time there is some
38:24 concern about lack of effect now again
38:26 that was with very early botulinum toxin
38:29 where the two strands of uh the
38:33 were not terribly well manufactured you
38:35 used to have little bits that used to
38:38 and be very uh uh immunogenic so you
38:41 antibody formations there's some
38:45 trauma of the procedure as well but but
38:47 to be brutally honest
38:48 uh we haven't run into too much of the
38:50 problems i do come across an occasional
38:53 uh associated with it uh um um
38:57 but i tend to sort of either pretend to
39:00 or sing a baby shark and most of the
39:05 uh look at me sympathetically and allow
39:08 it's not too traumatic and this is our
39:12 outcome within our population
39:14 so uh over that five-year period
39:17 we did injections we did 551 courses of
39:21 injections in 186 different children
39:24 with an average change in the drilling
39:28 of around 40 and an average change in
39:31 real rating scale and severity
39:34 of two and frequency of one and a half
39:38 but a marked improvement in quality of
39:42 and the family as i said we had minimal
39:44 side effects over that period of times
39:48 one thing that's real that's out there
39:50 in the literature is the risk of chest
39:52 infections you are dealing with a highly
39:56 friable population and so what i did
39:59 is i looked at my population before i
40:03 injections and i looked at the rate of
40:07 and i looked at the race rate of chest
40:09 infections afterwards
40:10 and it was markedly reduced
40:13 post-botulinum toxin injections
40:15 because the aspiration was less however
40:17 if you want to look slides down license
40:20 um any sort of reported element of
40:24 botulinum toxin injections and chest
40:25 infections afterwards
40:27 takes no account of the risk of the
40:32 without a reduction in the saliva loss
40:36 i would caution you that if you have
40:38 people that come and say well
40:39 you know botulinum toxin injections
40:41 you're increasing the risk of saliva
40:43 they're not working from the basis that
40:46 this is a population that
40:48 regularly get chest infections and if
40:50 you don't manage it
40:51 they are more likely to get chest
40:54 so our population in terms of length of
40:57 it was six point three uh uh eight five
41:00 to nine months actually or up to six
41:02 point three nine months
41:03 though the range was anything between
41:05 one month and 18 months they were
41:07 getting prolonged and protracted benefit
41:09 uh in reduction in anterior and in
41:13 posterior cyloria so that leads me on to
41:16 area so i work very closely as i said
41:21 with dan uh um on a consideration of
41:24 surgical approaches
41:26 uh uh and we liaise with each other in
41:30 of their referred patients uh and the
41:32 medical side of things in the botulinum
41:34 toxin hasn't been considered
41:36 uh they will refer to me and equally if
41:39 i think this is a child who would do
41:41 better with surgery
41:42 uh i will refer on from our saliva
41:44 control uh clinic on to you
41:47 in the ent surgery and there are a
41:48 variety i'm not going to teach my
41:51 how to suck eggs i know very little
41:53 about this area except to say
41:55 that our ent department at the evelina
41:58 when it comes to this it's predominantly
42:00 duck ligation duct transpositional
42:03 but also removal of gland
42:06 um the results can be variable
42:10 and there have been some meta-analyses
42:13 the problem of less effectiveness for
42:16 uh um but there's no doubt that it does
42:20 in terms of its benefit it's a lot of
42:22 control and the metro analysis
42:23 in terms of looking at complications
42:25 these are the sort of areas that have
42:28 in terms of aspiration problems of nerve
42:30 damage problems of localized edema
42:33 ranuli or or painful swellings
42:36 associated particularly with duct
42:39 and ongoing dental problems if it's done
42:42 widely our recommendation tends to be
42:47 we are at the end and we're not winning
42:50 we rarely recommend it before puberty
42:52 for the reasons that i talked about
42:55 uh that things can often settle down
42:57 once then uh secondary
42:59 uh dentition has erupted
43:02 so this is our surgical cohort and the
43:03 children that have come through here
43:05 though dan and ian and everyone have
43:06 done far more children than this over
43:08 that period of time
43:09 but these are the ones that we saw we'd
43:11 referred on for surgery
43:12 and came back to us post-surgery so
43:14 you'll see that that
43:15 in terms of changes of drooling impact
43:19 it's it's about the same as what iron
43:21 toxins it's just over 40 rather than
43:23 just under 40 which is the botulinum
43:26 and again the drilling and rating scale
43:28 is just a little bit less
43:29 and the drooling frequency scale is a
43:31 little bit more in terms of benefit
43:33 and a marked improvement in quality of
43:35 life for the child and the family
43:38 um so if you're looking at them all and
43:43 as a whole that's your comparison uh
43:46 endpoint summary slide we're almost
43:47 getting at the end of the presentation
43:49 uh i promise you um so as i said
43:53 oral medication minus 20 botulinum toxin
43:58 uh minus 40. uh um my functional therapy
44:03 uh epitropium uh um about -10
44:07 minus 12. uh and then this
44:11 uh is a slide that we looked with
44:12 regards to thinking about the droning
44:14 impact scale difference
44:16 uh and the variety of interventions uh
44:19 just again to give you some sort of
44:21 uh differentiation as to what's going on
44:24 uh with a variety of treatments uh pre
44:31 in conclusion here you are guys last
44:34 slide there is no point thinking about
44:36 managing drooling without a speech and
44:39 language therapist involved
44:41 really in an ideal world it would be
44:44 with someone who's got an interest from
44:45 a medical viewpoint
44:46 and you within the ent service but we
44:49 tend to do this side by side i've got a
44:52 clear awareness of how you manage it in
44:54 the nt within our ent
44:55 team and equally i think they've got a
44:57 pretty good one with so you work
44:59 side by side but uh um you're never
45:03 anything in my world particularly in the
45:04 world of neurology if you don't do it
45:07 therapist who've got much clearer idea
45:09 about swallowing difficulties and
45:11 okay your treatment option should be
45:14 based on your clinical judgment
45:16 as a surgeon or me as a medic
45:19 following the published and agreed
45:21 algorithms within the nice guidelines
45:23 okay and really the most crucial thing
45:27 is to improve that quality of life for
45:31 and their family yeah um
45:35 now um of course that's a fantastic
45:38 with regards to the complex children i
45:42 also you i don't know how much of a view
45:45 you have with regards to the less
45:48 complex children we sometimes see
45:49 in ent clinics in terms of your advice
45:52 with regards to the
45:54 developmentally normal preschool or
45:57 perry school child if you have anything
46:00 any advice with regards to them charlie
46:04 used the parcel absolutely from my
46:06 viewpoint you start you start the
46:08 and i rarely go down the to the level of
46:10 botulinum toxin with that population
46:12 group but i will talk
46:14 about uh i'll talk about developmental
46:17 so everything in life is a bell-shaped
46:22 so you will some of those children may
46:25 have a very mild worst to drought so
46:27 they may have a very mild bulba
46:29 challenge and they will come at you
46:31 with a variety of very mild learning
46:34 uh a variety of problems of of their
46:37 chew and swallow as well
46:39 so it's where that normality is but we
46:42 who are developmentally normal otherwise
46:45 and have an isolated silo ear
46:46 so about 15 of our 423 patients
46:51 in that population so even we will see
46:53 that so the first thing is educating the
46:56 the next is thinking about the
46:58 conservative measures
46:59 uh and thinking about it the next and
47:02 particularly if looking at that quality
47:05 and if there are real difficulties for
47:08 that child in a social situation
47:10 or in school we will consider
47:14 uh oral medication in particular so we
47:16 do do some glycopronin bromide
47:18 if that child is stated is over five and
47:22 is developmentally okay
47:23 and can manage we will work with a local
47:25 speech and language therapist
47:27 in using a myof functional therapy
47:30 to try and give them the awareness and
47:33 learn so they can learn
47:35 about how to swallow uh rather than it
47:39 so the very the most simple things so
47:41 your conservative measures
47:43 and your early points of treatment
47:46 many children will send to school with
47:48 an atrovent inhaler
47:50 because actually you know what in a in a
47:53 classroom of of 35 children
47:55 about four or five of them are going to
47:57 have an inhaler which are kept by the
47:59 for their asthma so actually if you can
48:04 an inhaler um that may give them some
48:08 uh for a few hours in the school then
48:10 it's entirely appropriate so that's a
48:12 nice little thing to
48:13 to to sort of try and nurture and nuddle
48:14 with because the children won't be
48:16 looking them in in a in a peculiar way
48:20 it's very uh socially normal uh
48:23 for uh for the use of an inhaler and a
48:27 in a school environment and is do you
48:30 think it's reasonable for
48:32 non-pediatricians to prescribe that if
48:34 they think it's appropriate after a
48:37 waiting and so on i think it's entirely
48:40 to to do that i think you lot know far
48:44 what goes on in the saliva world than i
48:46 do i'm just i've just learned
48:48 the ages i i think it's utterly
48:51 uh it's clear it's there it's in the
48:52 algorithm uh it's in nice guidelines
48:55 it's very simple to use and terribly
48:58 thank you charlie so the gps love you
49:01 because it's the cheapest thing
49:02 cheapest medication known to man whereas
49:04 glycoprone and bromide they will hate
49:06 you for because it's really expensive
49:07 botox doesn't work all the time why do
49:12 um it's very rare i have to say out of
49:15 our pretty extensive experience
49:17 uh um that it doesn't work i think you
49:20 have there are several things and
49:21 and and and i've mulled over this when i
49:23 sit in the sort of european consensus
49:25 working groups on this
49:30 several things if you're using it too
49:32 often uh it may well not work because
49:34 your glands not recovered if you
49:38 are uh you're going to make sure you're
49:41 so you've got to have confidence that
49:43 you're in the right place you might just
49:45 getting it you might not be hitting it
49:47 you might not have knowledge that you're
49:50 um there is some concern about antibody
49:52 formation there is also some concern
49:54 about uh botulinum toxin needs to be
49:58 maintained in a refrigerated environment
50:00 and if part of your
50:02 uh um delivery network breaks down in a
50:06 refrigerated situation
50:08 it's gonna denature the botulinum toxin
50:11 you know we have had the odd occasional
50:13 child where we think
50:14 that should have worked it's worked in
50:15 the past it hasn't worked this time
50:17 what do we do we always tend to give
50:19 them a second go we don't we don't go i
50:21 didn't work we're not going to do it
50:23 we always give it another go and and you
50:26 it's it's worked the next time and it
50:28 may well be that you just
50:30 didn't hit it right at that time which
50:32 is another reason to keep the dose
50:34 uh um uh because safety is more
50:37 important than anything else
50:39 and i suppose it's true to say a bit
50:42 and diversion surgery or um
50:46 you know surgery in general the botox
50:49 if you have someone that's very very
50:53 has very poor posture it's very
50:56 keep all saliva in the mouth even if you
50:58 reduce it i suppose
50:59 absolutely so again i think i think dan
51:01 that's a very fair point i think i think
51:03 the problem comes is that
51:05 that even if you are reducing the saliva
51:06 quite markedly if there's enough saliva
51:09 uh it'll still come out
51:12 um ivan has also asked another couple of
51:15 questions charlie with regards to
51:17 sma spinal muscular atrophy um
51:21 i don't know if you have particular
51:23 experience with regards to those
51:25 he feels that the botox seems to be less
51:27 effective in that group
51:29 um i mean i i we would have real
51:33 caution in using botulinum toxin
51:35 injection i have done it in some
51:38 uh neuromuscular children
51:41 but i'm very cautious about going
51:44 near any of those children with
51:46 botulinum toxin because i really don't
51:48 want to make the situation worse
51:49 so from my perspective i i really have
51:53 frog marched into a room with the
51:55 neuromuscular consultant's blessing
51:57 and a very clear discussion with the
51:59 families that there is this is risky
52:01 so it's got to be really severe and
52:03 really problematical before i will go
52:05 near any neuromuscular child with with a
52:09 and on the same well in a parallel um
52:13 discussion i i know we've also had these
52:15 discussions about how
52:16 low can you go in terms of age for botox
52:19 because you've been reluctant in the
52:21 very young population
52:23 for slightly different reasons but
52:28 um i i i should i've been
52:31 i have done it in one or two eighteen
52:35 uh um but you know as somebody with the
52:37 greatest so he's probably done it
52:39 more than anyone else in europe uh
52:42 except for maybe the amsterdam team
52:44 uh i i i there are limits for all of us
52:49 uh and i i would i i i struggle i've
52:53 i've done one or two children down at
52:55 that sort of level if they are on picu
52:59 to you for a year and you can't get them
53:00 off a ventilator but i
53:02 i i really i'm very firm with the
53:06 that this is way outside the norms and
53:10 evidence base i mean the evidence the
53:13 clinical guidance and guidelines say two
53:17 okay so if you go beyond that if you go
53:20 you are going through your peer-reviewed
53:24 process and protocol so you are setting
53:26 yourself up for a problem medical
53:28 so i am always and document very
53:32 if i ever go bl below two years that the
53:35 are aware of that and that i'm doing
53:37 this because i am being
53:39 requested by them rather than by my own
53:45 um dr ali alami's asked a couple of
53:48 what routes do you use to give
53:51 and um what sort of criteria would you
53:55 recommend for a referral to your
53:56 tertiary saliva control
53:58 service so that we send in the correct
54:00 patients but you're not overwhelmed
54:06 call you can give it any form entirely
54:10 so uh uh they can have it orally you can
54:13 there are tablets out there
54:14 uh gastrostomy um hopefully they're not
54:17 got an a's gastric tube because if
54:19 they've got a nasa gastric tube they
54:20 need to have that change to a
54:22 but you know glycoprotein bromide's
54:24 pretty easy to get down a a gastrostomy
54:28 um when we recommend referral when you
54:32 with managing it so we've got some
54:34 community pediatricians out there in
54:36 particular who are great who can you can
54:38 manage those early steps of things
54:39 and will only refer in when they're
54:41 considering butcherline
54:42 would you know this is not winning uh we
54:44 need to consider botswana and toxin
54:47 however there are others in other parts
54:50 um who haven't got a scooby-doo what the
54:53 um and don't know what an elbow is and
54:56 don't know what the posterior is
54:58 and that's absolutely fine so it's
54:59 really dependent upon your own comfort
55:02 so we accept referrals from
55:06 uh gp's uh uh pediatricians ent
55:09 specialists from and and it's really
55:13 need and require a second opinion so if
55:16 you think that you've
55:17 you've done what you are comfortable
55:20 and you've gotten below and above that
55:24 uh and you don't want to be you know
55:27 leading on that from that point we're
55:29 happy to take over we will see anybody
55:32 it's really we're there as a service to
55:35 local teams uh and it doesn't matter at
55:38 what level that their their
55:40 their experience and their comfort was
55:42 because they we're all different
55:44 um in terms of maybe just one more
55:47 questions come through let me just find
55:50 my zooming in experience of repeated
55:54 so again it depends so we i would
55:57 never do it more often than three months
56:01 safety more important to never do it
56:03 more often than three months
56:05 rarely and occasionally i'll do it
56:08 between every three to four months
56:09 and those are children where there are
56:11 clear clinical challenges
56:13 associated with their posterior cylinder
56:17 so those are children who have frequent
56:20 their secretions that are at risk
56:24 of respiratory damage if we don't keep
56:27 on top of them and i will do those
56:30 three to four months um generally as i
56:34 our pro forma we found on average six
56:38 five eight five nine uh uh months it
56:42 so on the whole it's once or twice a
56:44 year that we'll be doing the botulinum
56:46 uh injections uh um we
56:50 over the years i've i've injected every
56:52 single flaming saliva gland that
56:54 there so i started off for some unknown
56:57 reason doing the sublingual glands
56:58 and then i moved to sub mandibular and
57:00 then we did both sam and nebula and both
57:03 we have sort of settled on one parotid
57:06 and two submandibular
57:08 because it's it gives us a good effect
57:10 whilst minimizing side effect
57:12 so we do not see the sort of chew and
57:14 swallow difficulties if you do a
57:17 and equally you you can you've got
57:21 so that you can have a healthy aura
57:23 motor cavity if you don't do both
57:26 in in my uh sort of experience
57:30 many thanks for joining up and have a
57:32 good rest of the week
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