Marsela's Page
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HI I'm so sorry the Dr's aren't listening. I've learnt to shout for my daughter ( she's just turned four with diagnosis 2 yrs ago of Gen Dytonia which they think is PKD) my suggestion is to get yourself filmed having an attack. I hate doing it wit...
Well said Ellen...
Welcome to the Forum, Marsela..
Do keep us up to date about your daughter...
beka
Sorry Maresla I mistakenly thought you had a son, beautiful little girl. Thorns
Just a wild thought... anybody ever check her Biotin levels?
Low levels of biotin can cause dystonia that is reversed by high doses of this simple vitamin. Many states now require newborn testing of the enzyme that recycles biotin called biotinid...
Might wanna private message this contact information.
Hello: I happen to have these 2 people on my list to contact when you need help with children. I hope they are able to give you some advice on how to cope with your problems. Sisdailey@bellsouth.net
Also contact the dystonia medical research found...
Marsela;
I don't know if you know there is a group of parents that talk to each other that have children that are affected with dystonia, it may help to get their perspective on how they have dealt with their children having dystonia. The Dystonia...
Hi there, So sorry for such a delay in replying we've been moving house...what fun!
Just wanted to thankyou for taking the time to write a message, the support means the world to me. I hope your Dystonia is treating you gently.
Prayers are always ...
Dear Ramona
I'm so sorry for taking so long to reply. We've moved house and lifes been a bit loopy.
I want to thank you I appreciate all the input I can get.
Yes the Sinemet seemed to make the spasms which mainly are in her legs take over her whol...
Hi there Jenn
I just wanted to say sorry for not replying sooner. We've had to move house and I've started back at work after my 2nd baby.
I loved your reply and thought it was really interesting. The idea of too much Dopamine is something that ha...
sinemet made me worse also immediately. .. For me it increased my symptoms 5X.. i felt like an elephant was sitting on me and i began screaming 4 help and they gave me valium to calm me. It was given to me in the ER so i was lucky i was in a medic...
In what way did the Sinemet make her symptoms worse? Were the muscles more active and the spasms more intense? Or were there other side effects? This sounds a LOT like Dopa responsive dystonia - is there a chance they started her on too much medic...
Marsela,
I am so very sorry that your little one is going through this! I don't have much info on focal Dystonia (I have spasmodic torticollis and was afflicted at age 35). But, there are tons on this sight, I'm sure, who will be discussing this ...
Hi Everyone.
My little girl Lily is now three and a half. She's gone from focal( foot/leg) to Gen very fast in the year since diagnosis. In the last three months she had deteriorated steadily. We see severe spasms now attacking and twisting her wh...
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- In the online health communities I participate in, I'm:
- a Librarian (Passionate researcher)
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- a community I contribute to, my profile on another website
- More about me (my health interests and reasons for joining WEGO Health)
- My three year old daughter has Dystonia. At times this is very lonely, scary and confusing condition. I'd like to be able to understand as much as I can and maybe help others at the same time. We are new to it all as it's only been a bit over a year. We got Lily's diagnosis just as our second little star was born it's been a rocky old time but we're getting there with love and support. At first I rarely spoke about it as people didn't seem to understand ( it is rare) and my daughter looks so fine, but as she deteriorated I was suffering from nightmares and decided the time to open up was right. We've been lucky as opening up to friends especially as family were pretty much up together with us, has brought the much needed support I hoped for. Sadly though there have been a few ignorant comments which has led me to firmly believe raising awareness through education is the only way to go. I'm determined no matter how small, I will do just that. I want to chip away and hope that when my daughter is older a few taboos will be reduced. If one more person dares to tell me it could be worse I will scream! I'm very very aware of my blessings, and will never lose sight of them. I come from a paeds medical background so am only too aware. However this is our baby and I refuse to apologize just because others don't understand. The desperation of not being able to take this away from her as a mum is agonizing, the loss of innocents terribly sad. Like I said though I wouldn't have her any other way, this is not the whole of her just a part, and will fight all I can for her.
I look forward to getting to know all of you here
Comment Wall (1 comment)
- At 10:28am on July 10, 2009,
John said…
- Hi Marsela!
How are you doing today? It's always great to see new faces here on WEGO Health! Have you checked out any of our groups yet? It's a great way to participate in on the great discussions already going on.
Also, you should check out the forum. I posted '11 Health Myths' and would love to know what you think!
Lastly, you should take the 'What Type of Health Activist Are You?' Quiz. It's a great way to see where you fit into the community.
Let me know if you have any questions, and once again--WELCOME!
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