My 7 year old son has severe drooling. My sons paediatrican is willing to give botox a try,but doesn't seem to think it is yet availabe in this country.

If anyone knows of any clinical trials for this, please write.


Thanks

Hi cathy

Botox is being used around the country, my son had botox recently at Birmingham Children's Hospital. There results have been encouraging, but a word of warning although the procedure went well, 3 days later my son was admitted back to hospital, the botox had leaked into the muscles of the floor of the mouth, he now can't swallow, speak or eat, he is being fed through a nasogastric tube! I know this is a million to one situation but consider all options and decide what you think is best. Lots of children and adults do benefit from this treatment but it is worth knowing that the consequences may be worse in the short term. I have to add that my son has stopped dribbling! He is making steady progress and we are hopeful he will be back onto normal diet in the next couple of weeks. But no doubt he'll start dribbling again after that, we aren't considering further treatment with botox

Sorry to be so negative, if you would like contact details for the surgeons at the hospital let me know

Ellen

Hi Ellen

Thanks for that. That must have been awful for you! Hope your sons ok. You do hear of some horror stories with everything. I recently went to see the oral surgeon about gland reversal surgery, and there could be complications after that too. I am running out of options as to what to try for his drooling. I have tried everything from patches to medication and encouraging him to use his wrist band. He's 7 now, and other kids are noticing. Thanks for the info, though. And yes, if you can let me have surgeons details I can forward them to my paediatrician. Not sure if we'll go ahead with it though.

Cathy

Hi Cathy

The surgeon at the hospital is called Mr A Monaghan, he is a dental/maxfax surgeon and is brilliant, very caring and thoughtful which is quite rare in the NHS. Thanks for your concern, Alfie is definitely on the mend, we too tried all sorts of concoctions to stop him or just control the dribbling, i think we are going to go back to basics and try speech therapy as we have found a brilliant therapist at the hospital, she thinks that may be Alfie's swallowing was not 100% to start and they now recommend swallowing studies prior to botox or surgery. As regards surgery our consultant is very reluctant to do surgery as he feels the post op period is quite horrendous and there is again no guarantee. So I suppose its back to bibs again, Alf is nearly 5 and other children can be cruel, as he is partially sighted he attends a school for the blind so his class mates don't notice and frankly don't care! If we find any wonder cure we'll let you know, but in the meantime, I am in search of bibs that don't have cutesy pictures on them!

Ellen

Thanks Ellen

My son has a speech therapist, but I have never heard of swallowing studies. I'll bring that up at my next meeting. I recently went to see an oral surgeon to ask about surgery. She didn't have the success rate percentages, but said some parents found it effective while others said there was no difference. She also said there could be complictions, but has never experienced any in her patients. It's all a gamble isn't it. I know what you mean about cute bibs. I gave up putting them on him because of that reason. He wears a wrist band, which you can buy at many stores. As they're a fashion accessory they don't stand out, and I constantly remind him to wipe his chin. Kids at school are good too saying "Nathan ....chin", and he responds. When he has his school dinner he wears a bib that co-ordinates with his uniform. It is towellng and has a velcro fastener. Quite expensive at £5 a bib, but blends in quite nice. Comany called Seen in. Website - www.seenin.com. Have you ever tried any medication called glycopyrrolate? An unlicenced drug. It works to some degree, but even that hs its drawbacks. If you need more info let me know.


Cathy

Hi Cathy and Ellen

Luckily dribbling is one of the few problems my little man doesn't have (except when he's teething and then its like someone turned a tap on!). I remember seeing bandanas as an alternative to bibs once. They might have only been in baby sizes - but this might be a slightly trendier option than a bib especially now they are getting older.

Do your boys get sore faces with their drooling? My baby is teething at the moment and has a really sore rash on his chin and neck which I think has been caused by all his dribble.

I hope that Alfie continues to improve, and that you both manage to find a better solution other than a continuous supply of bibs.

Dom

Hi Cathy

Never heard of that drug could you let me know some more info about it. Just been for a check up today and Alfie's swallow is returning he can now have jelly and mashed potato, but not necessarily together! So he's a bit happier. Dribbling has still stopped so its a bit of a bummer that he reacted so badly!

Ellen

Hi Ellen

It is an unlicenced drug for children. Called Glycopyrrolate, brand name - Robinul and is used for reduction in production of salvia during dental procedures. I had problems getting hold of the medication initially. Because my sons GP weren't happy prescribing it as it didn't know enough about it. So the paediatrician writes a prescription now and I have to go to my local hospital to pick it up. A bit of a pain, but if thats what I have to do to get hold of it. My son has had a long term problem with constipation, which only recently did we realise was a side effect from the tabs, so now he has to take lactulose along side them. He takes maximum dosage for is age, 2 tabs crushed with yoghurt every morning. By 4pm ish the effects are wearing off and he's very wet again.

I've put a note in speech therapists book about swallowing studies, and also e-mailed paediatrican writing about your experience with the botox. Hopefully she can advise me further.

How long ago did Alfie have the injections? And how long did the dribbling stop for?

I took Nathan to the library after school today, he went and sat down with a book next to a couple of older school children. When I turned round I saw the school children shying away from him, cringing, because he was drooling. I was furious! Nathan hadn't even realised what was going on. But I said to the children "he can't help it, and you shouldn't stare like that". I really dont know how I didn't hurl a load of abuse at them! I could have cried! How dare they! If only I could stop the dribbling, he would be treated just like anyone else. Anyway, I'm getting wound up thinking about it again, sorry.

Dom - My son does tend to get a red chin, but the medication has helped a lot and stops him getting to sore.

Cathy

hi

i've just re-read your post on drooling after a very soggy weekend with Matthew(!)

I noticed constipation was a side effect for your son and he has lactulose. Matthew was put on that pre gastro as he suffered from severe consiptation due to the small amount of liquid he could take in. However we soon took him off it once we realised it works by taking water out of the general circulation and drawing into the stools, so he would end up losing more valuable liquid and have a serious risk of dehydration - especially during summer. So please make sure your son is getting plenty of fluids to take into account the extra the lactulose will draw out of his system.

Just a thoughtt....!