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Old 02-27-2009, 09:03 PM   #1
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Question Lost In Ohio Our Daughter has uncontrollable limb twitching, and labled as Psuedo CZ

Our daughter was born 3 1/2 months premature at 1lb 6 oz due to my wifes low lying placenta. She was in Neo natal ICU for 90 days and has been perfect since, until recently.

Our daughter is now 17 years of age and is having uncontrollable twitching / tremors. It all started about 6-8 months ago during her swim team practices and swim meets. At first they thought it was anxiety or she was pushing herself too much during the swim meets. She would have to be pulled out of the swimming pool and would be completely drained of energy with her eyes going back and forth rapidly, a few times she actually blacked out. Her family Doctor had a bunch of blood test ran and all showed fine, we then went towards the heart. She has had an echo, a stress test, along with numerous EKGs all showing fine. Up until now she would only have these episodes after exerting herself physically.

Most recently she woke up for school and her eyes were twitching rapidly back and forth and difficulty speaking. After the episode she felt physically drained. The Doctor had her wear a heart monitor that has showed no ill results. She had an episode the other day where her eyes began with rapid movements, then her head started twitching uncontrollable to the left and right, and now her entire body twitches.....legs, arms, torso.

We have now had an EEG, another EKG, additional blood work, along with a CAT scan and tonight an MRI. All are showing fine.

We are at a complete loss as she has been in perfect health up until this year. We thought she was just pushing herself too hard swimming. But now just sitting watching TV she begins having these. The episode today lasted almost 2 hours to where she fell on the floor began twitching and two hours later head arms and was still twitching. She says she can feel the episode coming on before it happens. And says it feels like peanut butter in her throat, she can talk and remembers everything during the episodes.

She is also coherent while these episode are occurring, she can seen everything just burred do to the rapid eye movement. Sometimes she cries uncontrollable and sometimes she laughs not knowing why. It seems the episodes are occurring more frequently now. Before she may have on episode during swim practice and would just relax a while and be ok, now its moved on to uncontrollable limb movements and head movement that lasts for hours.

Any help or insight to what direction we need to push towards would be deeply appreciated. She has never been on any medication nor has she ever had any medical issues or trauma besides at birth.

I think the Doctors may be leaning towards mental as they want her to meet with a Psychiatrists, I know its not in her head it has to be something in the nerves. I am afraid a Psychiatrists will want to push drugs that will only mask the issue at hand. Our next step is to take her to Children's Hospital in Columbus Ohio to see if they can help.

Thanks in advance for your help.

Lost in Ohio

Last edited by ewilley; 02-28-2009 at 07:19 AM.

 
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Old 02-28-2009, 04:24 PM   #2
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studey HB User
Re: Lost In Ohio Help Needed for Our Daughter uncontrollable twitching just started

This is really good that all these reports are showing good...EEG, would show any abnormal brain activity, Cat and MRI would show any abnormal tumours or arteries or veins..or cancer...Which is very good that isn't the case..Blood work so far is negative..Which again,,good...This would be a very hard case..And if I was her mom or dad,,Worried to death, for the sudden change with all normal findings..Take her to everyone, even a psycharatrist until whatever it is...comes out, But I will be praying for you and your daughter, Hugs, Studey
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Old 02-28-2009, 04:28 PM   #3
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niknak77 HB User
Re: Lost In Ohio Help Needed for Our Daughter uncontrollable twitching just started

Have they checked for seizure activity? If not, that may be a possibility.

 
Old 03-05-2009, 05:53 AM   #4
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bethsheba HB Userbethsheba HB Userbethsheba HB Userbethsheba HB Userbethsheba HB User
Re: Lost In Ohio Our Daughter has uncontrollable limb twitching, and labled as Psuedo

Quote:
Originally Posted by ewilley View Post
...I think the Doctors may be leaning towards mental as they want her to meet with a Psychiatrists, I know its not in her head it has to be something in the nerves....
I would agree with you, very much so! If your doctors find no explanation, I would suggest you investigate the possibility of Lyme Disease which can cause the symptoms you describe. The majority of doctors, specialists included, do not have the knowledge or the experience to diagnose and treat this condition...and we don't have tests that are conclusive. A Lyme Literate Medical Doctor is the specialist you would need to see for ruling Lyme out/in.

There are many myths about lyme...so before reading the myths and ruling Lyme out, consider the following:

1. Less than 30 percent remember a bullseye rash.
2. Lyme can be transferred by insects other than ticks, in utero, sexually (some think), and theoretically via blood transfusion.
3. Lyme can lie dormant for weeks/months/years after the host has been infected.
4. IF doctors test for Lyme, they use the Elisa test, which is relatively inexpensive and easy to use...BUT some say it is so inaccurate it should be banned. NO test can conclusively detect Lyme (although some are better than others) and for that reason diagnosis is often based on symptoms (in other words, a clinical diagnosis).

Good luck.

Last edited by bethsheba; 03-05-2009 at 05:59 AM.

 
Old 03-06-2009, 01:28 PM   #5
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Bugalooob HB User
Re: Lost In Ohio Help Needed for Our Daughter uncontrollable twitching just started

She may have some form of epilepsy...They should do a EEG with video monitoring..A regular EEG gives the best results if done soon after an attack..Also there is a special MRI given for seizure activity in epilepsy called epilepsy protocol MRI..

Dave

 
Old 07-19-2010, 03:08 PM   #6
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wrfishers HB User
Re: Lost In Ohio Help Needed for Our Daughter uncontrollable twitching just started

Please, if you can find an answer and I hope you can, post it on here. My 36 yr old son is experiencing the same symptoms except his are continual twitching of the arms and legs and worsens into his head and neck. He is currently in UAB hosp in AL, supposed to be the best around, and they have been running test on him since Sat, 7-17-10. If they find anything I will certainly make a post to advise. His started Friday while he was at work, he had a fire extinguisher acidentally discharge and he inhaled a large quantity of the chem in it. Since, the longer he stays awake the worse his symptoms get. They are having to keep him sedated most of the time just to keep symptoms under control. They too have ran MRI, EEG and numerous blood tests to find answer to problem but keep coming up blank. I know how you and your family feel because I belive both have same symptoms. Will keep you and yours in our thoughts and prayers. God speed to the doctors.

 
Old 07-21-2010, 02:41 PM   #7
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Hopeful always HB User
Re: Lost In Ohio Our Daughter has uncontrollable limb twitching, and labled as Psuedo

Quote:
Originally Posted by ewilley View Post
Our daughter was born 3 1/2 months premature at 1lb 6 oz due to my wifes low lying placenta. She was in Neo natal ICU for 90 days and has been perfect since, until recently.

Our daughter is now 17 years of age and is having uncontrollable twitching / tremors. It all started about 6-8 months ago during her swim team practices and swim meets. At first they thought it was anxiety or she was pushing herself too much during the swim meets. She would have to be pulled out of the swimming pool and would be completely drained of energy with her eyes going back and forth rapidly, a few times she actually blacked out. Her family Doctor had a bunch of blood test ran and all showed fine, we then went towards the heart. She has had an echo, a stress test, along with numerous EKGs all showing fine. Up until now she would only have these episodes after exerting herself physically.

Most recently she woke up for school and her eyes were twitching rapidly back and forth and difficulty speaking. After the episode she felt physically drained. The Doctor had her wear a heart monitor that has showed no ill results. She had an episode the other day where her eyes began with rapid movements, then her head started twitching uncontrollable to the left and right, and now her entire body twitches.....legs, arms, torso.

We have now had an EEG, another EKG, additional blood work, along with a CAT scan and tonight an MRI. All are showing fine.

We are at a complete loss as she has been in perfect health up until this year. We thought she was just pushing herself too hard swimming. But now just sitting watching TV she begins having these. The episode today lasted almost 2 hours to where she fell on the floor began twitching and two hours later head arms and was still twitching. She says she can feel the episode coming on before it happens. And says it feels like peanut butter in her throat, she can talk and remembers everything during the episodes.

She is also coherent while these episode are occurring, she can seen everything just burred do to the rapid eye movement. Sometimes she cries uncontrollable and sometimes she laughs not knowing why. It seems the episodes are occurring more frequently now. Before she may have on episode during swim practice and would just relax a while and be ok, now its moved on to uncontrollable limb movements and head movement that lasts for hours.

Any help or insight to what direction we need to push towards would be deeply appreciated. She has never been on any medication nor has she ever had any medical issues or trauma besides at birth.

I think the Doctors may be leaning towards mental as they want her to meet with a Psychiatrists, I know its not in her head it has to be something in the nerves. I am afraid a Psychiatrists will want to push drugs that will only mask the issue at hand. Our next step is to take her to Children's Hospital in Columbus Ohio to see if they can help.

Thanks in advance for your help.

Lost in Ohio

 
Old 07-21-2010, 03:05 PM   #8
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Hopeful always HB User
Re: Lost In Ohio Help Needed for Our Daughter uncontrollable twitching just started

ouI really feel for you and your daughter. When I gave birth to our daughter she was a complete month over due. I was told that her plausenta was completely white hard ruff bumps all over it and that she was not being fed in the 10th month that I was carrying her! They had also had a specialist who had to work hard at bringing her back to life because she had the cord wrapped around her neck twice and so when I pushed she'd get sucked back in and finally when they grabbed her and pulled her out she was dead and they had to bring her back to life. I knew something was wrong but the nurses told my husband to lie to me and say everything is fine or I was going to bleed to death because I was already bleeding bad. I don't know if her birth has any effect on her but she seems physically healthy child and she too is 17 years old. She has some disorders though and wonder if she has side effects from the birth experience. She just recently fell from a three story roof from a Epic center like the one I use to work at. I was a youth service counselor for run away kids and state kids. Anyways she fell and she was transported by helicopter to Harbor View Hospital in Seattle. She had tubes everywhere and they had to drill a hole to relieve pressure of swelling and bleeding in her brain and drilled a hole in her right ear because of the swelling and hemmatonma from her right ear that was attached back to her head. She has short term memory and at the first five days she could only make out three words when trying to talk and get words of letters mixed up. She is out of the hospital now. She has a fracture by her right temple running back to her back of the head. They want and is setting her up with a shrink. She unfortunitly needs some help. I wonder when she was born if she had some brain damage. I don't like shrinks because they use what ever you say against you and your daughter. I would be very careful in what you say. Trust me, the system is not on your side. Just be careful what you say because what you say can be misconscrude or they hear one or two things and then write something that is not true. I have gone through 9 years of heart ache and now just starting to be able to have a relationship with our daughter. It is a long sad story but I only want to stress on being careful and selective.. on what you or your daughter says. The system is out to make money. Sad, this site is wonderful for people do care and you can get some good advice. I would read up on her condition and see what can help her. I do not think she needs a shrink. When she was born did they use a clamp to pull her out? Giving birth is hard and delicate because our children can end up with neurological problems from it. I will pray for your family and want to know how it is going for you and your daughter and family. Family is everything and so is God, God is there for us especially during our hard times. He is of comfort k... Keep in touch. I do care very much, your daughter sounds like a good person and she is on a swim team, awesome...
from hopeful always

 
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