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
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!
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).