Dystonic Spasms

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Category:

Education

Tags:

• Dystonic
• Spasms

[colleenknight26]

I'M SORRY FOR YOUR LOSS... SHE IS SOOO BEAUTIFUL.... I LOSS MY 19 MONTH OLD SON AUG 7 2011 FROM EPILEPSY BUT MY ALMOST 3 MONTH OLD SON MAY HAVE FORM OF DYSTONIA.... AND I'M VERY SCARED ... CAN YOU EMAIL ME PLEASE . HUGS

[alisonmaguire]

@colleenknight26 - I am so sorry you lost your baby to Epilepsy. It is such a cruel disease. I was shocked to read that you think your new baby may have dystonia? I found the seizures & spasms quite hard to tell apart but I definately think that the spasms were worse. At least with the seizures they often don't know they are having them.....(how your perception of life changes when you have a sick child) Have you had your baby on an EEG? What have the doctors said? x

[alisonmaguire]

She had both seizures and spasms and they were very hard to tell apart (unless she was having an EEG) but watching her over the years we learned that we could often "break" the spasm for a second or two, but she would not respond if it was a seizure.

Her rescue medicine was the same for long seizures and long spasms but nothing could cure them and she passed away last year aged 4.5.

[myactseb]

i feel bad for those kids who are in spams like that. I could imagine what it's like to have them. It's horible to see then go through it. I wish I could take their place.

[alisonmaguire]

I agree, we always wished it was us not her.

She would often scream out in pain when she was in spasm, and our only option for her was sedation - it was not nice for her at all poor little thing :-(

[WICK3Dsister]

i truly believe a lot of childrens problems stem from certain vaccinations - ie, my sister in law has life time nerolgical effects from a flu shot 2 yrs ago.

[alisonmaguire]

Our little girl had an underlying neurological disorder (caused by a metabolic defect). We were never sure whether the spasms were due to her underlying disorder or a side effect of one of the many drugs she was on.

She never had a flu shot so I can be sure it wasn't that (for her) but I am sorry that your sister in law's suffering was due to her jab - I have never had one but my daughters looked very painful for her.

[colleenknight26]

@alisonmaguire 

yes we have did EEG and CT done both come back normal .... but he is having attacks and they last longer now that he is 3 half month old ...... hugs

[JourneyAnyWay]

Poor baby. Ever one who has a healthy child should realize how fortunate they are.

[lty2k84]

Poor baby. Though the bright side of it all is that she has nothing to worry about anymore.

[chechnya]

@WICK3Dsister Believe all you want, there is no evidence of that.

[CaliDude1984]

@intrusosgang I am so sorry intrusosgang. My heart goes out to you and your son. God bless both of you. Fuck those who hurt hum.

[intrusosgang]

@CaliDude1984 I agree 100% with you the doctors messed up my 3 month old baby, now he's 10 years old with cerebral palsy symptoms. All he needed was heart surgery and they brain damaged him.

[intrusosgang]

You rest now, little Angel.