[my3angels]

Hello,

I am new to the forum and have a few questions. I have a daughter that is 16 and she has suffered from tremors for about 6 years now. Her primary diagnosis is Angelman Syndrome, this syndrome has movement disorders as a characteristic, but usually children with AS are born with the movement disorder, and do not develop it. Her tremors started right before the onset of puberty. Currently she is on Propranolol and takes Clonezepam only when the tremors get really bad.

My questions are:
My daughter is non verbal and can't really tell us when she is in pain. These tremors look like they are very painful, how much actual pain do you go through when you have a tremor? Or is it just more annoying? Many people without tremors say they don't hurt, but it sure looks like it does. I would like input from a person who deals with this, afterall, they would know best.

Also, has anyone tried Depakote to help with the tremors?

And, what is the best way to control tremors that you have found, besides medication. We work with wrist weights and that does seem to help some, she also has a weighted vest we use when her legs are affected.

Any advice would be greatly appreciated.

kathy

[macacoza]

Hi KAthy
I am sorry I cant help you with the tremors from angelman disease...what i have is strictly essential trmeors. IF your daughter has the same kind of tremors I do then i can assure you it is NOT painful..it is annoying and embarrasing at times. I am a Realtor so i deal with people and presenting contracts every day. I have gotten to the point that I tell folks what I have because i do not want them thinking that I am JUST nervous. They are very accepting and most have questions which I am very happy to answer...This past year it has started to effect my voice..this saddens me deeply as it is hard to sing with my grandbabies...or at times to even carry on a conversation without trying to control my shaky voice. LAst month my DR talked to me about going to see a speech therepist to learn ways to control the shakiness at least a lil bit. That is soemthign I am going to pursue i think. Please keep in touch and let me know how yoru daughter is doing!
Deb

[my3angels]

Hi Deb,

Thanks for the response. I am reassured to know the tremors don't hurt. From an outside point of view, it sure looks like it should. The tremors also affect my daughters voice. She cannot talk, but she does verbalize and you can hear a clear shakiness.

Honestly, I don't know if the tremors in AS are the same as an essential tremor. I was researching tremors and different kinds. Unlike some form of tremors the shakiness does not happen during rest, usually only when she starts a fine motor activity, essential tremor was the only distinct diagnosis I could find that I could compare to Mandy's tremors, so I decided to ask some questions.

Again, I really appreciate the response and good luck with a speech therapist, I would be interested in an update if you decide to go that route.

kathy

[macacoza]

Hi KAthy
You are right in that with essential tremors when at rest it all just goes away...BUT..it I wake up during the nite and reach for my glass of water there it is again...so irritating! I will gladly keep in touch..if you would like to write me at my email address to make it easier that woudl be great.
[moderator note: e-mail address has been removed]
Take care and let em knwo how things are going
deb

[aladley]

Moderator note: although this forum does not allow the posting of e-mail ... there is a chat feature on the healthchannels toolbar. Download our free toolbar here: http://healthcommunitiescom.ourtoolbar.com/

[macacoza]

Hi KAthy
I guess we can NOT give out our email addresses..if you ahve more questions please feel free to ask..or if you just need to talk..I am here. I may not can answer your questions..BUT..I sure can listen!
God Bless
deb

[my3angels]

I saw that post also, can understand their point of view. I will keep you updated on things.

Thanks again

kathy

[macacoza]

You are very welcome KAthy!
good nite and sweet dreams
deb