Progressive Myoclonic Epilepsy

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clickfast
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Date Joined Mar 2007
Total Posts : 2
   Posted 3/19/2007 11:22 PM (GMT -7)   
2 and half years old, male kid born to normal unrelated parents, with normal milestones and development had involuntary jerks of both upper and lower limbs, after treated for some viral fever, when he was 11mths old. He has not been diagonised and the prognosis till date was auto-immune disorder and he was treated with several anti-epileptic medications, immunoglobulins and steriods (OMA) however, there is no residing in the jerks, for the past 16mths. He is normal during his sleep.
 
Currently he has lost his food and liquid swallowing abilities, unable to hold his neck, cannot sit, stand or talk, he is not able to use his hands for play or anything. None of his tests so far, have revealed any neurological disorders, except the EEG (with right side epileptic discharges). Few of the rare PME diseases has already been ruled out. He is currently on clonazapem and levetiracetam.
 
Doctor has suggested to try for Keotgenic diet, but we do know that it will be difficult to put on such diet. Can anyone suggest, how stem cell research is helping such patients.
 

Another Day
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Date Joined Mar 2007
Total Posts : 1055
   Posted 3/30/2007 10:27 PM (GMT -7)   

Clickfast,

I so wish I had could tell you something that would help your son.  I agree with Gracie's Mom's advice, keep searching for the right diagnosis.  I, too will keep him in my prayers.

Carla from Kentucky

 


Another Day
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Date Joined Mar 2007
Total Posts : 1055
   Posted 3/30/2007 10:33 PM (GMT -7)   
Gracie's Mom,
 
Thanks for sharing the pictures.  I am assuming the little girl is also your daughter.  They are both beautiful!  It's nice to put a face with the people we communicate with.
 
I also have myoclonic seizures, among others.  The myoclonic seizures were the ones that were documented on the four-day EEG last August, but I have since had several different types.  I also had few as a child.
 
Give my best to Gracie and the rest of your family.
 
Carla

Another Day
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Date Joined Mar 2007
Total Posts : 1055
   Posted 3/31/2007 2:18 PM (GMT -7)   

I had the 4-day EEG in-patient at Vanderbilt University Hospital.  I live in KY about an hour away.  The myoclonic seizures were the only ones they captured on the EEG.  But, I am obviously having others.  No, they are not under control yet.  They do seem to only happen at night now. 

 I took early retirement last August when all of this first started happening or at least when I first became of aware of it.  I also have severe asthma (adult onset 5 years ago at the age of 52) and have to take a lot of prednisone and I always just assume that anything that happens is just another side effect of the dreaded prednisone and try to pretend it's not happening.  So, I was pretty much sitting at my desk having myoclonic seizures all day long.  On the day that I could barely talk, one of my  daughters rushed me to the ER (from work) because she thought I was having a stroke. They also thought so too in the ER.  After they ruled out a stroke they referred me to a neurologist here in Bowling Green who referred me to Vanderbilt.  I do like my doctor. 

I had my most frightening seizure about two weeks ago.  The first thing I was aware of, I was sitting straight up in the bed in the middle of the night seeing flashing colored lights, followed by fog.  I was able to get up and walk around, but it was still happening.  The numbers on the clock even appeared to be moving.  This seemed to go on for about five minutes.  My neurologist said it was definitely a seizure.  I am now on Topamax and Kepra.  This forum has been very helpful for me.  For a few days I hesitated to tell my daughters  or close friends everything about that particular seizure.  I was afraid they would think I had totally lost my mind.

Of course, after I have seizures my daughters or I don't feel comfortable with me keeping the grandchildren.  I haven't kept them over night at all since I started having seizures.  I'm hoping to get to a point to be able to do that again.

Thanks for listening!

Carla

 

 

 


Another Day
Veteran Member


Date Joined Mar 2007
Total Posts : 1055
   Posted 4/14/2007 2:07 PM (GMT -7)   
Hi Gracie's Mom,
 
We don't know what brought on the asthma late in life or the seizures.  I can't remember if I mentioned it or not, but I did have a few seizures between the ages of 12-13  during a stressful time and then I had another one in 1983 when my 19 year old little brother died in an auto accident.  I was 32 at the time.  I am now 56 and just started having the myoclonic seizures last summer followed by several other types of seizures.
 
Yes, I have had different types of sleep problems.  Right now, I can't go to sleep until about 2:00 - 4:00 a.m. and then I want to sleep at least 12 hours.  I am not foggy when I am awake, I just want to sleep.  Right now I take 500 mg. of Kepra twice a day and 200 mg. of Topamax twice a day.  When I have to take large amounts of Prednisone for asthma, I have to take something for sleep.
 
My grandchildren, I would love to tell you about them.  My daughter Tracie, has Jackson who is 6 and Jillian who is 3 1/2.  My other daughter, Jill has Morgan who is 2 1/2.  My daughters are very close and Jillian was named after her Aunt Jill.  I have so much fun with them.
 
I am 29 days seizure free!
 
Take care!
 
Carla
 
 

clickfast
New Member


Date Joined Mar 2007
Total Posts : 2
   Posted 5/2/2007 10:57 PM (GMT -7)   

Hi Gracia's mom and another day,

I appreciate your concerns of my son. His mother is really taking all pains of feeding him, and taking care of his day to day activities. I understand it will be heart breaking and painful for any parent to feel and see day in and out their kid's sufferings.

All his test including Lumbar puncture was done almost 3 times over one year period and there are no signs of any infections or changes in glucose or other protein levels. We are worried, why none of the investigations are showing any results till date, including MRI of brain done almost three times in span of 6 mths each.

I was looking for any suggestion about Ketogenic diet helping kids get relieved of the encephalopathy. The doctors are doubtfull, it could be due to some unknown or rare disorders, but the prognosis is worsening and getting delayed, as he is suffering for almost two years now. With his growing age, we are worried about his health. The myoclonic epilepsy is only a symptom, the underlying reason or problem is yet to be diagonised.

We have tapered off all allopath medicines and have tried for last couple of months on homeopath (Predicitive homeopathy by Dr. Praful Vijeyakar, Mumbai India) whose medicines have helped him take his food regularly after four months of difficulty in swallowing, but at times he gets continous myoclonic jerks at sleep or during sleep in night, we had to give him Clonazapem, which reduces the jerks for sometime.

I wish and pray god that no one on this earth get progressive myoclonic epilepsy at childhood (1 in 1,000,000 get them).

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