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Drooling

chadsmom
0 Recommendations

Hello,
I have a teenage with W/D. He was diagnosed about three years ago. He has been taking Syprine for over 2 years now. He seems to be getting worse than better with the neurological problems especially with the drooling and speech. Is this normal. Has anyone found a medicaltion that helps or is this they way it is. He is such an optimist in his outlook of life and his father and I want to make sure in his life there is always something wonderful ahead to look forward too.

Explore topics in this discussion:

Syprine Speech therapy Penicillamine

5 replies

Casca

Try trientine. it stopped me from drooling!
Good luck!

frodoboy

Michelle,

It takes up to two years for a person to get through the neuro presentations of Wilson's. D-Pen is a little scary for a person with neuro Wilson's to be taking. It can worsen a person dramatically and that can be permanent! If your son is handling it ok, he is probably safe, but if he is worsening neurologically, you might want to talk to your doctor about moving him to Trientine (Syprine) and zinc. This is much safer and will still get the copper out of his body (Trientine) and keep new copper from getting into the body (zinc). It has been shown in several studies that a person with neuro Wilson's can be adversely affected with D-Pen (Penicillamine) so ask your son's doctor to switch to Trientine. There still may be side effects but they should clear up within 2 years. Also, make sure he gets physical and speech therapy to keep those muscles working. As the brain heals, his muscles all must be toned for him to recover those functions.

In some cases, as in Amy's son and my son, you just never know if anything is going to work or not but having him on D-Pen is almost a sure bet for him to get worse. Read the Wison's Disease Association site about the use of D-Pen for neuro Wilson's and then print it out for your son's doctor if he is not willing to switch to a safer medication. Good luck!

frodoboy

Chad's Mom:

first of all, Syprine can cause worsening initially but within the first 2 years, the person should get better. Syprine is not the best method of treating neuro Wilson's but it is safer than Penicillamine. I would talk to Chad's doctor and discuss putting him on zinc only (Galzin) as that will have no detrimental neuro side effects as Trientine might have. If he is de-coppered, usually zinc is more than enough to maintain his copper levels without further damage.

michellerichard

HI,
my son is turning 17 this month and was diagnosed with wilsons disease in October last year. He seemed to develop physical symptoms over night. One of them excessive drooling. We started him on zinc but there was no obvious improvement and then started him on d-penicillimine. The drooling was the first symptom to go . His speech has improved slightly but at times is still inaudible. He has been on the med since the end of Dec, but his neurological behaviour has not improved. Do you know if this will improve?

If I can help in any way, or you you have further info or advice please contact me at michellerduncan@yahoo.com
Regards Michelle

Amy4

Hey,
My son was diagnosed in Aug 2007. He's been on TM and zinc and on Syprine. Clay is stable, but lost the ability to speak, eat and walk. He is also the ultimate optimist. We still hold out hope. Even on chealaters he didn't improve. But in saying that there are always things to look to forward to. My email is akc_n_nc@hotmail.com

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