PDA

View Full Version : Botox update



berdbrain
15th March 2013, 19:08
Well as I said my sis had the botox injections 10 days ago and they say you have to wait 7-10 days for it to work. At the moment the saliva problem has improved but there is a lot of mucous in the mouth and it is very thick and it just sits there..'disgusting' to quote. Also if she tries to eat anything at all which she was still trying to, she is totally unable to because everything gets stuck and she has coughing fits, which we know is difficult to say the least. The nurse has told her not to try to eat by mouth but to take all her food through the peg, and the trouble is that she is feeling very hungry because psychologically while she was trying to eat a little by mouth she felt ok.
I am hoping that the thickness may ease up with time, but feel utterly helpless as she is still getting over the gastro enteritis.
It is impossible to compare 'life limiting' illnesses but this one really has to be up in the top 2
BB XX

pete
15th March 2013, 19:36
Hi Debbie,

Sorry to hear Sis is going through a rough patch, but good to hear her saliva has lessened, it's a bit of a blow but tell her not to let this get her down, it's very easy to feel as though all is lost, but you really do fight this every day, and when you say mucus exactly what do you mean is it very thick clear or does it have a colour to it, sorry if this sounds bad just trying to understand why she can't spit it out , I guess she has tried the pineapple juice, Mucadyne, and any others that might help but maintaining your oral health is vitally important , I even have to resort to brushing your teeth as many times as it takes to remove it and a good mouthwash after all helps , really do hope she finds a way, it's very depressing for her after all she has tried, fingers crossed she finds away to overcome it soon. hugs all round I think.

Pete

Rory
15th March 2013, 20:44
Hi Debbie
I think Pete has covered it all in his usual helpful words - what would the forum do without him !
As he says, persevere. I cannot cough as the throat muscles don't work so I have a combination of said medicine and a suction machine.
Have handy a nasal spray to keep the nose clear - it is most frightening if the nose and throat get clogged up together - let's hope less chance of that now that the warm weather is approaching !
I agree with the discipline of cleaning teeth and mouthwash - it seems to help.

Best of luck to SIS and hope she improves

Officer Dribble
X

berdbrain
16th March 2013, 08:45
Thanks you two you're stars, she does brush her teeth and use mouthwash throughout the day, I will get some pineapple juice...but do you just sort of move it 'round your mouth because obviously she's not able to swallow it....and then spit it out? She doesn't have a suction machine....so I'll tell her about that too.
For now, wishing you a good day even with this lousy weather, and hopefully the Rugby will be worth watching, with a half a Guinness in hand, Happy St. Patrick's Day for tomorrow,
slainte
XXXXXXXXXXXXXXBBXXXXXXXXXXXXXX

john
16th March 2013, 09:32
Hi Debbie,
I look in on alstdi website from time to time. Yesterday there was a post from a guy called Ron who to be honest is an old cynic, about Botox. He was saying that there were reports in the US of people who had difficulties swallowing after Botox injections. Looking elsewhere on the site there were reports from others and so maybe your sisters position may result from the injections. Irene had 3 or 4 injections but I seem to think she had gone over to totally peg feeding by the time she had her first. It may be that your sisters swallow will return over the 3 or 4 months before she is due her next injection and she may have to decide if she would sooner swallow or have less saliva. This disease never gives up on new challenges.
As Irene's illness progressed she lost her ability to cope with liquids in her mouth and after tooth brushing we used a small syringe to put water in her mouth and held her head tipped forward so she could let it simply run back out.
John

berdbrain
16th March 2013, 11:26
thanks John for your reply, she was fighting to keep the bitof swallow that she had, because she was working on the 'use it or loose it' saying. Now that she seems to be choking even more when she tries to swallow, and to be honest she was choking before but she coped with it at home, she is having to just have the peg feeds....I'm going over later today so I'll see what the situation is, but thanks for the syringe tip too. You are so right about the challenges this horrible disease gives...but like you I'm sure while you had Irene alive, you have to work out ways 'round things and keep fighting.
much love DebbieXXXXXXXXXXXXXXXXXXXXX

miranda
16th March 2013, 11:41
Hi Debbie - sorry sis is having another complication to struggle with. Vaguely remember reading about putting pineapple juice on a swab and wiping it around the mouth - sounds awful but might be worth a try??

berdbrain
16th March 2013, 12:12
Got the pineapple juice this am and will bring it over and suggest a swab ...also got a lovely, well kitshy, plastic red pepper sort of pot thing in M and S and I thought she could use that to spit into and nobody would see what was inside...worth a try!
Thanks Miranda.
love, Debbie XXXXXXXXXXXXXXXXXXXXXXX
no point editing this, because I can't spell kitche.... kitshe, but you know what I mean!

pete
16th March 2013, 14:13
Hi Gang,

Lets hope it's an unwanted side effect from the injections, and as John suggests it wears off in time, as for the pineapple juice I believe it has something to do with enzymes in the juice , whatever it is, it works well in breaking down the unwanted gunk that can be a real issue, and don't swallow the stuff ,however unpleasant it may appear to others get it out and I am sure once it clears she will feel a lot better, still wondering what's best dribbling or choking on mucus, hard choice to make, I would go for the dribbling as annoying as that is at least it's not as unpleasant as the other , and certainly not as hazardous if it gets into your throat.

Rory
16th March 2013, 15:50
Hi all
In answer to Debbie's question - yes I do take a swig and suction it out as the swallow is weak / approaching non existent.
I do though carefully sip the odd small bit of rum or even Malibu (seems thicker) with coke to keep the alcohol level up in my body.
I would rather die of choking on alcohol than MND.

I don't want MND on my CV

Rory

berdbrain
16th March 2013, 19:52
good evening, just to say that my sis sends her love and thanks you all for your suggestions. The pineapple she tried immediately, and will keep going with that...using a swab and spitting it out in her new 'pot'. She also has mucodyne and has started that today, so we'll see what happens, I'm sure as you all say it makes a difference, it will. Also she has a suction machine coming on Monday so that will help with this horrible rumbling stuff that she has constant trouble with at the moment.
She says that the botox has definately helped a lot. However Rory she demonstrated how her jaw clamps when she uses her electric tooth brush, so this botox has been injected into the parotid glands and maybe you would have to have it injected into somewhere in your jaw for it to relax your jaw? Anyway it is making no difference to her jaw clamping.
I also told her about the hot water steaming Pete, that you say helps you and she may do this tonight to get some relief, but with the suction machine coming we think that will help a lot, especially as I told her you use it Rory and think it's good.
Can you tell me why you have a ventilator Rory and is that the same as a bipap machine? Just thinking, maybe I ought to mention these things as I am sure I thought about a suction machine for her but I didn't want to mention it before she needed it and I should have talked about it a few weeks ago, and then she would have had it in place now when she needs it...
Anyway, I feel she still has her fight and she and her husband are just trying to organise themselves with all the right meds and the correct amount of feed to get her nourished and without 'the squits'.
thanks again all of you
sending hugs and kisses and as usual my prayers for more time and comfortableness (not a word i know but you know what I mean) for you all XXXXXXXXXXXXXXXBBXXXXXXXXXXXXXXXXXXXXX

Rory
16th March 2013, 21:59
Hi Debbie
The ventilator is called a Nippy , which is the same as a BIpap machine, I think. It just pushes air onto the lungs especially where the lung muscles are weak and the lungs need to be kept at reasonable capacity. It pushes air in not oxygen. We also have a humidifier that is linked to the nippy to moisten the air pushes through - can help the mouth drying out at night.

The suction machine does take a little getting used to. It is best if your sis uses it herself as she will know how far the suction tip can go down.
But it does clear the whole mouth out.

I take your point on the Botox - I use a standard toothbrush as I nearly broke the smaller electric head with one foul jaw movement .

The missus cleans out the tube after every use by clean water and a little cleansing fluid in and then wipes the suction bit with a soft wipe.

The tables gradually fill up next to me with all these gadgets, wipes, cleaners, medicines, sprays ! feeder, not forgetting the bell - hardly anywhere to put the rum !

Enjoy the rest of the weekend !!

Rory

berdbrain
23rd March 2013, 12:36
Another week, another update, the botox has made a huge difference to the saliva problem. Yes she still has the kitchen roll handy and needs it, but only 1 piece at a time as opposed to a whole roll having to be torn off 'at the ready'. The cough is still not good...the doc came back on thursday and has prescribed anti biotics, the odd thing was that when she was upright the cough was awful but when she was lying down it was ok. She didn't cough too much yesterday so hopefully the anti biotics are what was needed. She has the suction machine, and I passed your words of advice on to her Rory (thanks, she says) and she is using her toothbursh as an excavater of the mucous! she doesn't feel the mucadyne is doing much.
She has also decided that she is cooking fresh food and blending it to within an inch of its life and putting it in the peg. If you google this, there are lots of people who are doing it quite successfully. Rachel at JR says that this is ok, and she is very sensible and will use lots of water and lots of flushing, so we are hoping that this will make a huge difference to her weight, because one thing is for sure the feeds are doing nothing, she is wasting away.
I was also interested to read on a thread, John mentioned it, about this scale thing, and how they can predict how long you have left. Well I am very sorry that her GP, who is organising the Ian Rennie nurses for her, amongst other things, felt it ok to tell her that she had 6 months to a year to live......why...and how did she know and could put a time scale on it? did she use the scale that John is talking about?......I know people can't bury their head in the sand but to keep up morale and the fight, she didn't have to say that outright.....if my sis got a chest infection it could take her from us, but if she gets more nutrition with the meals and she and her friends are going to prepare for her, it may give her strength that she needs to carry on and have more time to make the best of the life that she still has. I am not being niaive but I also think that you have to have hope and determination to keep on fighting and that helps you live longer.
Anyway I will let you know how the 'real food' feeds are going, and if the botox continues to be of help.
love to all
XXXXXXXX

Rory
23rd March 2013, 17:47
Thanks for the update Debbie
With regards where we all are along our journey with MND, my consultant doctor said in December that she thought I was 80%/ 90% down the path ! In real terms that makes 6th September or 6th April as key dates respectively!

I intend to be around both days and beyond and to have a good measure of rum both days .
At the moment , apart from MND , I feel fighting fit

- no toothache
- no athletes foot ( nor athletes anything else for that matter ! )
- no blister through walking (I can't )
- no cold , sore throat etc (onions in the bowl doing their bit )
- no gout ( now that is painful )
- no broken bones
- no headache ( come on down baby)
- no arthritis
- no boil on the bum ( that could be the worst of all ! - I can hear Roy taking the puss!)
- no pulled muscle (steady)

And the remote has got new batteries in !

If I can make good use of the Botox for the saliva issue then I might celebrate and let the missus push me a mile to a riverside pub !

You will be pleased to know that the embargo on XXXXX s has been lifted for the next 2 months !!!

Wherever we all are on our journey , I am sure there will be a cure over the hill before we are !


Cheers

Rory

berdbrain
25th March 2013, 22:06
Most important things first, thanks for lifting the kiss embargo, I can smooch a sigh of relief,
You could say you're in rude health!!!...if it wasn't for the bar steward that is MND,
as for the doctors/consultants or what ever they like to call themselves, they don't know everything....
Keep fighting, and making the best of times, despite this horrible weather......
XXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXDebbieXX XXXXXXXXXXXXXXXXXXXX

Rory
27th March 2013, 08:15
Hi Debbie
You are right in saying the doctors don't know everything but I have to say everyone I deal with from local GP , MNDA, O/T,district nurse, physio,therapist, neurologist etc have been wonderful - with constant advice, honesty and support. And not forgetting the forum!
It has been a pleasure to have been ill with this Bar Steward of an ailment !

The other day, jaw closed with a bang and a grind which broke one of the teeth and the next time I used the suction machine the broken tooth cut my tongue - fun and games but I suppose it added a bit of colour to the gunk !
That followed on from last Friday when I had a blockage in the RIG feeding tube but with a day in hospital and some coke and sparkling water , it cleared.

As I think Pete said, this bar steward brings fresh challenges very day - like a pincer movement attack on us!
Now I know how the Royal Engineers felt at Rorke's Drift !


Keep smiling

Rory

berdbrain
27th March 2013, 19:04
Rory, that's terrible.....the broken tooth and then the day in hospital.....did you not think you could unblock it at home with the coke and sparkling water? and was the coke flat or fizzy? I am so sorry for this mishap?......maybe don't put Mars Bars through!
XXXXXXXXXXXDebbieXXXXXwishing you clear tubes today and every day!

Rory
27th March 2013, 20:13
Hi Debbie
We had tried sparkling water and even a bit of olive Oil - well it worked on the shed padlock !
When we went to hospital they tried coke - fizzy - but it just spurted everywhere and didn't budge the blockage. The next day before the x ray we tried again ourselves with sparkling water and , hey presto , it flowed through. I missed two feeds but I felt fine and the nurses made it a pleasant stay !
As you say, the Mars bar and roast lamb should be perhaps liquidated first of all before stuffing down the tube.

Oh well , we will see what this week brings.

Hope SIS is fighting fit and smiling !

Rory
X

bakeit Forum