My 7 year old son has mild left side cp, and has severe dribbling. He has been taking an imported drug called glycopyrronium, Robinul, which does have an effect, but doesn't eliminate it. Recently I spoke to his paediatrician about surgery which would involve reversing the salavia glands. I feel a bit anxious about it and have arranged to speak to a specialist about it. But wondered if anyone else had come up against this problem.

My 9 year old daughter also drools quite badly. We do use the hyoscene patches with her, but continued use tends to over-dry her mouth, even with a quarter patch. We've chatted to her consultant about other treatments and he did mention the surgery you describe. He said that it was actually fairly serious surgery and not easily reversed. He also said that there is a new technique involving Botox injections into the same glands which effectively "freeze" them and halt excess drooling. This obviously sounds a less intrusive operation, though I'd imagine it would need to be repeated after time as the Botox wears off. We've decided to stick with the patches for now, but I just thought I'd mention the alternative so that you could raise it with your son's doctor. Good luck.

Hi
My 10 year old daughter drools - particularly when concentrating - we also discussed the option of surgery with our paed. but have decided to stick with Kwells travel sick tablets which work the same as hyoscene patches. They certainly seem to help - just half a tablet with breakfast - no drowsiness. I might just investigate the use of Botox though - could be interesting.

Sandra

Just so everyone is aware that the CP Helpline has a, now, out of print leaflet (in photocopy form only) entitled 'More about Drooling'. Although this covers the same ground as the Scope factsheet 'Drooling and cerebral palsy' is does go into more detail. Obtainable by contacting the CP Helpline

Thanks for the info on Botox, I have heard of that method before, but not enough info. about it. I have tried Junior Kwells, and also the Hyoscene patches, which actually irritated his skin, and so had to stop using. The most efective has been the glycopyrronium, and even that hasn't works wonders. When the appointment comes up with oral specialist, I think I will ask about the Botox.

Thanks

I forgot to mention the problems we have had with the glycopyrronium, Nathan has been using them for approx. 2 years, and only recently have we found out that this medication was the cause of 'poo accidents' at school every other day. He was being sent home from school because they thought it was a tummy bug. At last be got to the bottom of it (excuse the pun!), we went to see the bowel specialist and they took an x-ray, which revealed an overflow - he was constipated! which is actually a side effect of his tablets, but because he was having so many accidents we never for a second thought he was constipated. He now has to take 4 spoons of lactulose a day, alongside the tablets. So ideally, if there was an alternative cure for his drooling it would be far better

I recently spoke to my sons paediatrician about trials for botulinum injections for the treatment of drooling. She seemed to think it was mainly used in adults and that the work in children is at an early stage. She felt positive about it though and asked me to try and find out any information and names of doctors or units that are doing this, and she could follow it up. If anyone knows anything, I would be grateful for any info.

Thanks

Using Botulinum toxin A (Botox) as a treatment for excessive drooling in children with cerebral palsy appears to be a relatively new idea.

Using an online search engine such as AltaVista to look for botulinum+drooling+cerebral directs one to a lot of interesting reading. However this nearly all seems to be originating in the USA and Canada.

At: www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=...
I found Abstract of a clinical trail conducted by: Bothwell JE, Clarke K, Dooley JM, Gordon KE, Anderson R, Wood EP, Camfield CS, Camfield PR. Of the Department of Paediatrics, Division of Paediatric Neurology, IWK Health Centre, Halifax, Nova Scotia, Canada. The abstract had previously been published in: Pediatr Neurol. 2002 Jul;27(1):18-22

It states that “Drooling is problematic for some neurologically impaired children. Botulinum toxin A injection to salivary glands has effectively reduced drooling in adults but has only recently been used to treat children. This was a preliminary study to determine the efficacy and safety of botulinum toxin in children. Children identified as having severe daily drooling were enrolled. The preinjection assessment included measurement of the amount and frequency of drool. Each parotid gland was injected with 5 U of botulinum toxin A. Follow-up was for a minimum of 16 weeks. Nine children were enrolled, 4-17 years of age. All children had moderate or severe mental retardation. At week 4, all patients had a reduced drooling frequency and eight of nine patients had a reduction in the weight of saliva. Overall, five of nine parents (55%) deemed the treatment successful. This preliminary study demonstrates that botulinum toxin A is a relatively effective treatment for some children with significant drooling without serious side effects.”

However, UCP’s factsheet titled “Management of Drooling, 1/2003”, which can be found at: http://www.ucp.org/ucp_generaldoc.cfm/1/4/...24/24-6608/4270 states:
“The use of a neuromuscular blocking agent has been tried for the control of salivary production (i.e. Botox). However, the complication of jaw dislocation has been reported. There does not appear to be any advantage to the use of injectable Botox over other medications”

So it seems that at the moment there are differing opinions as to the usefulness of Botox as a means of managing drooling and that further research is needed. There is no suggestion in any of the literature that I read that this is a treatment that has been embraced by the medical profession in the UK; although, of course, this may change in time.

It is also important to remember that cerebral palsy is a very diverse condition and that even if Botox becomes widely used in the treatment of drooling in children with CP it is very unlikely to be suitable for everyone.

I have a 5 year old girl with spastic diplegia, she has always drooled a lot and hyoscine patches cause a nasty reaction on her skin, very painful and inflamed. I am seeing her neurologist on the 18th october and am going to suggest botox, if that works then in the future, the surgery might be an option, but I have always erred on the side of caution and knowing botox is temporary (She had it in her calfs last nov which has helped )and she had no unwanted side affects i think try it first and then think about the permanent surgery which is quite complex and painful to recover from for when she is older and more able to understand.

I'll keep you all posted.

Jude

I noticed you have an appt. 18th October to see your neurologist re. botox injections. I am in the process of trying to find out more information about this method for drooling, as I have exhausted every other. My sons paediatrician is under the impression that it is not widely available, so if you find anything out from your meeting I would really appreciate it you writing back.


Thanks


Cathy