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berdbrain
22nd November 2012, 21:16
Hi all, I have been reading posts daily and I have to tell you that my sis has put back on the 2lbs she lost....it's good but she needs to increase a bit more now.......She went to the specialist this week, which always leaves her really low as Mr. Turner wants to tell her what to expect next and she puts her hand up to stop him. She is driven crazy by the saliva (so much kitchen roll) and the patches and the glycc stuff don't seem to work for her. the specialist suggested botox (apparently it stops you from producing so much saliva) but said it can make your neck muscles weak. I looked it up and I would be wary of it....has anybody done it?
I did tell her about you again Pete, and also about Rory and his positivity, and this has cheered her a little.
I guess it's natural to feel low after they have poked about and examined you in hospital, that's what I said to her, also weather is so awful, it's enough to depress you - she also wasn't putting in enough liquid so she had a whole litre yesterday and had to get up 3 times for the loo!!!!
Anyway does anybody have any thoughts on botox? and yes I will also phone MND Connect for their advice and input.

Everybody with MND whatever form is in my nightly prayers,
with love
BB
XXXX

michelle
22nd November 2012, 21:57
Hi BB

So sorry your sister is struggling with saliva, my mum was exactly the same and the patches gave her hallucinations which weren't nice. I started to look at Botox injections and they do seem effective, though that's not through personnel experience rather by googling. I don't know if you've seen this leaflet from mnda but ill post you the link

http://www.mndassociation.org/Resources/MNDA/Life%20with%20MND/Information%20Sheet%20P3%20-%20Saliva%20Control.pdf

I had started to give mum pineapple juice, though she couldn't drink it, I put it on a sponge swab, apparently it's good for saliva and helps breakdown secretions.

I know what you mean about kitchen roll, we found that ikeas white napkins were so much better, they are thicker and more absorbent and not as abrasive as kitchen roll. They're cheap too we bought in bulk!

Best wishes to your and your sister

Michelle

berdbrain
22nd November 2012, 22:06
thanks for that info. Michelle, I will phone MNd tomorrow and see what they have to say, there are lots of people on here who seem to need neck braces, but obviously my sis doesn't want one until she absolutely has to and she doesn't want to make that time come quicker. I have looked at your link leaflet, thanks again, and it doesn't mention weakening neck. The Ikea napkins are a good idea, it just looks so awful to outsiders, I think that really bothers her, as it would me.
Thinking of you too in your time of grief,
with love
BB xxx

pete
22nd November 2012, 22:24
Evening Both Debbie and Michelle,

Debbie just my own view, unless it's really dire, have to say for me I wouldn't risk the Botox , maybe others know better, but for me it's a no no, as always best to you all, tell sis to stick at it .

regards

Pete
X

john
23rd November 2012, 00:04
Hi ,

Irene had botox and it seemed to dry up her saliva a little. Nobody mentioned side effects but if you read any leaflet with medication they all seem to warn of dire consequences for some from taking them. Seems to me it is just big pharma covering their backsides so whatever comes from taking then meds they can stand back and say we told you so - don't sue us you were warned. Her deterioration continued but I wouldn't like to say whether or not the botox made a scrap of difference. Who knows?

John

miranda
23rd November 2012, 20:50
Hi BB Great news that sis has put on some weight. I have been offered Botox but somehow don't fancy it and it has to be repeated every 3-4 months I think.

berdbrain
24th November 2012, 10:04
thanks for replies, I have been looking on ALS site and it seems that more people in the States have had it done with good results, I know what you mean Pete about not using such a radical thing as Botox, but I think she feels now that the saliva is so bad, she will give this a go. However I had quite a lot of wine last night and my mouth was very very dry through the night and I kept waking up and wondering if this dry mouth would be what she would have instead! I know there are sprays and things to help with the dryness. I have googled it and I will give her a list of good things people say and bad things people say and I also phoned MND Connect and they felt that especially as the Professor Kevin Talbot had suggested it, it would be worth a try. I know that at the hospital they just tell you all the options and you have to make your own mind up.
Does anybody else get down after the hospital visit, it has taken her days to brighten up a bit, and I think that psychologically not having to constantly use kitchen roll/serviettes would make her happier. She says she doesn't want to go again because it's too depressing.
So John I think even if it worked a little that would be some good result, and Miranda yes the weight thing is good, but I always want more!!!
Pete, my husband would be like you, he does his best not to take any medication if he can help it, so the thought of Botox is not a good idea to him.
Just one last thing, my parents came from Ireland and the nearest town to their villages is Westport County Mayo and that is where Botox is produced...it has brought prosperity to that town.
thanks for your comments as always
with love
XXXXXXXXXXXXXXXXXXXXx

pete
24th November 2012, 13:51
Hi Debbie,
Just to wish your sister well if she goes for the treatment, I know only to well how she feels some days it just drives you nuts, as for the MNDA saying as the Prof Kevin Talbot had said it may be worth a try, I have to say , not everything the specialists tell you is set in stone.

I know having been told i needed an operation on my neck failing to do so would be harmful to me , I had never been ill until that time and didn't feel ill ,but reluctantly agreed to silence the nagging !! , What they failed to mention was , there was no guarantee that the operation would work, that there may be side effects, that left my Left side of my face dead to any touch or heat source ,and even now when trying to eat anything you get feelings like electric shocks along your jaw , and to top it all three hours of surgery resulted in a total blockage of what was a partial block before they messed with it , So Debbie you will forgive me for not getting all overcome about anyone in the "the know " suggesting things ,what i would want is someone who knows where and how much to use to avoid making matters worse for sis ,whatever she decides i wish her well and hope it works for her .

pete

berdbrain
24th November 2012, 15:25
Of course you're absolutely right Pete, I am sending you a PM which I hope will make you laugh
So many times you are all stuck between a rock and a hard place and there is no best way.
I'll make the list for her and it's her decision, and also who does it is of paramount importance if that's what she goes for.
I am sorry that your procedure wasn't as successful as they suggested.
thanks

pete
24th November 2012, 15:53
Hi Debbie,

Next time you see sis give her a hug and kiss from me and tell her not to change being who she is not ever ??,still chuckling

pete.
XX

berdbrain
26th November 2012, 20:45
she says she won't change Pete! well I have passed on all the info to her, so it's up to her to talk to the dox and make her decision....I did find out that they are using Botox more and more for children with cerebral palsy, I have been working all my adult life with people with different learning difficulties and disabilities and I know how hard some of the older ones found the constant excess saliva, and how embarased they feel, so I guess it's a move forward for them. Also I have a cousin who has dystonia and with the regular use of Botox injections in his neck he can carry on his job as an anti terrorist police detective, which is good for all of us....so I've learnt lots of new things while doing this research. If anyone else is considering it it must be Botox A and it must be done with ultrasound so that it is directed to exactly the right place.
I am still back to praying that she puts weight on.....and whatever she decides that it gives her more peace of mind and more time.
thanks to you all for your input
XXXXX

pete
26th November 2012, 21:06
Hi Debbie,

Whatever she decides ,I hope it helps her, so fingers crossed as always,

Pete

michelle
26th November 2012, 21:37
Hi Debbie
Just wanted to say you are a lovely sister, your dear sister is lucky to have you.

Best wishes to you and yours

Michelle. X

john
26th November 2012, 22:23
Hi Debbie,
Maybe if it doesn't slow the saliva it will smooth out a few wrinkles. What girl wouldn't want that!(lol).


John

berdbrain
27th November 2012, 22:43
Thanks Michelle, that's lovely coming from you and you were so good to your mum....as for your John......she is beautiful (Audrey Hepburn type) and would always use a little extra help from products and did have something similar to Botox, although she didn't really need anything.....we all want to smooth those wrinkles though, you're quite right!
thanks again to you all
X

Lisa
14th January 2013, 18:30
Hi all my mum has bulbar palsy and the drooling is really getting her down, she's tried patches but these dried everything up so the hospital have stopped them, now they are suggesting Botox has anyone had this done as it says on the mnd site it can cause swallowing problems has anyone experienced this as my mum already has enough problems with swallowing.

Lolly
14th January 2013, 20:25
Have you asked the GP for some medication to dry up some of the saliva? Also there's a travel sickness pill, called Kwells - this has the active ingredient in the meds prescribed but they are a little less Potent

Lisa
14th January 2013, 20:39
Thanks for your reply I will let her know its worth a try. She is constantly walking around with tissues.

john
14th January 2013, 21:30
Hi Lisa,
Irene had about 3 Botox injections at 3 monthly intervals. Seemed to give some relief from the drooling but she also had hypos ins patches and amytriptoline and still had tissues and suction machine so I am not sure the Botox was worth bothering. Did read afterwards that Botox was not a good idea for ALS/mnd sufferers but. I can't remember why. Will try and find the thread and come back to you.

John

john
14th January 2013, 21:53
Hi again Lisa,
The Food and Drug Administration's warning includes both Botox, a wrinkle-specific version called Botox Cosmetic, and its competitor, Myobloc, drugs that all use botulinum toxin to block nerve impulses, causing them to relax.


In rare cases, the toxin can spread beyond the injection site to other parts of the body, paralyzing or weakening the muscles used for breathing and swallowing, a potentially fatal side effect, the FDA said.

"We have become aware of a number of reports of serious adverse reactions related to the use of botulinum toxin products," Dr. Russell Katz, director of the FDA's Division of Neurology Products at the Center for Drug Evaluation and Research, said during a Friday afternoon teleconference. "These are reactions that involve parts of the body physically distant from the site of injection."


Currently, the drugs' label warns against using these products in people with neuromuscular disorders, Katz said."

actually, Botox injections are actually composed mainly of Botulinum toxin that are in fact medical derivatives from Clostridium botulinum bacterium (which causes botulism) that have been intentionally abused before for the purpose of chemical warfare owing to its intense toxicity.

The above are part of a discussion on alstdi in August last year regarding botox injections.
I would have a very serious discussion with whoever is recommending this for your mum and ask if they are aware of FDA concerns and the warning on the drug label. Obviously FDA is the US and doesn't apply here but presumably they had sufficient doubts to issue the statement.

john

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