Drooling

• By Bronwyn
• Posted January 15, 2008 at 8:51 pm
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Mic --

My drooling cleared up with taking TM and Zinc Acetate.

Good luck,

Bronwyn

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• By lindy
• Posted January 17, 2008 at 6:01 am
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hi mic, my sister has severe neuro wd and she takes Artane for her drooling. seems to work well most of the time,maybe you could ask your dr about trying it.
Good luck :)
Melinda

ps. anything you want to know regarding neuro side of wd just ask, have seen everything with
my sis and will try to help you as much as i can. x

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• By Amy4
• Posted January 17, 2008 at 11:33 am
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Hey Melinda,

My son has WD with severe neuro and cirrhosis. He is 17 years old. He was treated in Michigan in Sept. At his followup in Dec. he had a feeding tube put in because he was having trouble swallowing. He is on 20mg. of Artane and 300 mg nueorotin for pain. He has dystonia in his hands, foot and hips and pull left with his head. He also has dysartria so he can't speak right now either. He has gotten steadily worse since diagnosis. Michigan says the damage was already in the process like trying to stop a freight train, it's going to take time to reverse the effects of the copper. His numbers went from 225 to around 136 at the followup for his copper level. A little high, so we will do another urine check in March. How long has your sister had WD and what are her symtoms. We are looking for that silver lining for the future, but sometimes it's hard to see it. Just looking for some insight. He really is very willing to do whatever it takes to get better, he's my hero!

Thanks so much,
Amy (akc_n_nc@hotmail.com) if you want to e-mail.

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• By lindy
• Posted January 22, 2008 at 6:52 am
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Hi Amy,
i have beem following clay's story on the other forum, i think it is your daughter Abby? that posts on there a bit.and it is very similar to cath's.Cathryn was diagnosed with wd 21 years ago when she was 13,have 3 brothers with it as well, and seemed to be doing ok until about 2 years ago when the drs found the copper in her brain.she told us that she had not been very compliant with her meds over a number of years .she was on penicillimin at the time, which is the no 1 choice for drs here in australia,so her liver dr decided to triple the dose to try and get the copper out quickly, that was the first big mistake that was made, and she started to go downhill very quickly. finally got her on to trientine ,after much arguing , and she started to improve after 6 weeks. but then the stupid dr ordered some injections called BAL and that was it she could no longer walk at all, lost her speech and her swallowing became pretty bad.
cath had a tube inserted in her stomach in may 2007 because of aspiration .
Cath cannot walk(or even stand alone), has severe dystonia in her hands,wrists, is curved to one side, sometimes finds it hard to close her mouth, cries/screems alot, cannot swallow very well(sometimes not at all) and has lost 45kgs(about 8 stone ) in 12 months.
I hope this is not depressing you , just remember that clay will improve i think mainly becuse he
has the best drs in the world helping him, god i wish i had those guys here in oz, he has a great
family supporting him, he seems to have a great attitude towards this and from what i have been told and read things do get back to normal for most neuro wd patients.i'll admit there are times when i relly doubt that cath will ever be the same again but i still do have some hope, but remember cath was non compliant with her meds for a number of years and her stupid dr here did alot of stupid things so she will probably have some thing that will never be the same again.
i do believe that Clay will improve, remember most get worse before they get better.
Amy i know what you are going through and that silver lining i believe is there :)
Is he getting physio, speech therapy etc? because that is very important not only for physical reasons but also helps to keep their mind on something other than their illness, cath was in hospital for 4 months last year and they did not do anything with her and that is when she lost her balance and became more depressed, plus the fact that they were not giving her meds at the right time, so make sure he keeps as active as he can.
well i think i have rambled on enough,lol, just remember to stay positive clay is a young man who has his whole life ahead of him and i'm sure it is going to be a very happy and rewarding one!!
with best wishes

Melinda x
Ps. you can e- mail me off the list if you like (scott.docherty@bigpond.com)

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• By Rose5
• Posted January 27, 2008 at 2:01 am
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Hi Melinda x

Reading your story about Cath was so sad ---- where in Australia are you?
I am in Melbourne

I know what you mean about having to fight to get medication here - went through that myself...
my daughter was diagnosed November 2007 so I am still learning about WD as I go along - this community has been my Godsend for help...

I am so glad to hear your staying positive :) - She will get through....

Its great having you in the community - your knowledge and help for others is fantastic

stay safe and hugs

Rose
x

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• By lindy
• Posted January 28, 2008 at 5:37 am
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Hi Rose,
I am in Adelaide
have been reading about Lauren and yourself on this forum and on the other one as well and you and your daughter are amazing people:)
isnt it frustrating how we have to fight so hard just to be heard in this country.i am so sick of some drs not listening to me and saying how sad a situation it is that cath is going through this
but then they will say that dont know much about wd especially the neuro side of it. hello that is why i do my research and talk to drs who are specialists but their egos wont listen to what another dr ,especially from overseas, has to say !
Rose you are doing a fantastic job and if i can be of any help to you and Lauren please dont hesitate to ask, we are practically neighbours:)
Hugs to you both and to the rest of everyone in this community.
Melinda x
p.s. e-mail me at scott.docherty@bigpond if you like, i will give you my phone number if you like and maybe i can get yours.

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• By Rose5
• Posted January 28, 2008 at 5:58 am
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Hi Melinda x

So glad to hear from you and thanks for your email - will email you and would be great to talk on the phone :)
If you ever need an ear - your more than welcome to ring and vice versa -- not many of us Aussies around

Hows Cath going?
Your amazing yourself xx hugs xx
You have been doing a fabulous job as well...hang in there

Thanks for the kind words - it has definitely been a battle, specially at the start with trying to get the trientine - think that was my hardest struggle

will talk with you soon
stay safe n take care
Rose
xx

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