My 15 year old daughter was diagnosed WD 7 months ago and is under penicillamine treatment since then. Her main symptoms are neurological. Her biggest concerna are slow talking issues and some swallowing problems. Her hand writing is terrible too. We have an appointment with Dr. Bronstein at UCLA late June. Meanwhile I would like to know base on everyone experience if these symptoms get better with time and treatment, if any kind of therapy helps, if changing trientine instead of penicillamine relives these symptoms, etc.? We are still waiting to know when Zinc is going to be required. Probably her cooper levels are still high. Any comment on how these symptoms have evolved in some of you will be much appreciated. Because we leave in Mexico and not many cases are registered there is not very much information available. I have been reading all posted discussion topics and feel solidarity with all those much more complicated cases than my daughter’s, my prayers are with all of you.
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WD neurological symptoms
- By Atorres
- Posted April 24, 2009 at 1:33 pm · 4 replies
- In Treatment options
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- By lindy
- Posted April 28, 2009 at 7:59 am
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Hi,first of all my heart goes out to you and your daughter. i know what you are going through, my sister,Cathryn, has severe neuro wd . first of all i would get her off of penicillimin and on to trientine as pen is known to cause worsening in neuro patients. secondly most people with neuro wd ,after starting on tretment, worsen for the first 6 months then slowly improve from there . it can take up to 2years to get all the unwanted copper out of her system. you say that your next appointment isn't until June if i were you i would try and get in sooner. is she having regular 24 hr urine tests and bloodwork done? Vitamin D levels can be a concern with wilsons patients. i know alot of people who take both trientine and zinc combination with great success until copper levels are reduced then take zinc only from then on, but only take the zinc on its own once safe levels have been reached.
Cath cannot eat, walk or talk at the moment and the swallowing and talking are usually the first skills to suffer in neuro patients . How much penicillimin is your daughter taking? just make sure whatever treatment you choose that they do not try and pull the copper out TOO FAST as from what i believe this can cause the copper to lodge in the brain and cause irreversible damage. i think this is what penicillimin does as it is a strong chelator, trintine is not so strong. Make sure she ,sorry do not know your daughter"s name, has regular speech and physiotherapy to keep things moving and keep an eye on her swallowing as you don't want her to aspirate any food or liquid in to her lungs.
i hope i have not scared you at all as that is not my intention , just remember it will probably be a long hard road for your daughter but she will get better it just takes time. i truly believe that lots of love and support can be a godsend in these situations and you are doing a great job with that :)
here is my e-mail adress if you would like to write to me personally scott.docherty@bigpond.com.au
- By lindy
- Posted April 28, 2009 at 8:04 am
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sorry, my dughter pushed send before i was finished!!!
i hope i have been of some help to you and your daughter.
you are in my thoughts and prayers.
Melinda xx
- By Atorres
- Posted April 28, 2009 at 11:50 am
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Thanks a lot for your comments. Unfortunately trientine is not available in Mexico neither zinc. That is why we are traveling to UCLA to get a prescription and be able to buy medications in the US. Will contact you directly to clarify some issues according to your experience with your sister. Once again many many thanks for your comments are very valuable since no one in Mexico has enough experience with this disease. When I joined this community I tried to find Mexican patients to share comments and I was the only one in the community that time.
By the way, these days a general alert on “swine flu” is everywhere and specially shows our country (Mexico) as a high risk place with epidemic throughout the country. I just want everyone to know that as today things are pretty much under control, numbers of people affected with the flu is around 1,800 out of a population of 100 million and unfortunately 200 persons died (not all confirmed with the porcine variation). Prevention measures are in place (schools are closed everywhere) and mass concentration events were canceled (weekend soccer games in the capital city were played without spectators for example). These among other things as hygiene recommendations to all our population. The economic activity is still going on but with a decrease in certain recreation activities. This weekend is a long one due to a Holiday on Friday. That will help a lot and will see how all these measures attack the possible spread of the disease. I thought that this comments will be of interest due to the misinformation that could be out there.
- By Atorres
- Posted April 29, 2009 at 11:04 am
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Just to clarify numbers shared yesterday about the “porcine flu” impact in Mexico, the official data is de following:
Persons sick with similar symptoms that could be related to the disease 2,498
Suspicious deaths because of the disease 159
Confirmed deaths with the disease 7
Patients treated in a period of 48 hrs from first symptoms are 100% cure. Even patients treated after this period of time have a lot of possibilities to be cure; however deaths registered occurred mainly in this situation.
The disease is curable if treated on time and properly.
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