Newbie here....

[sweetFaith98]

Hi. My name is Lori and my 12 (soon to be 13) yr old daughter is having some major issues right now. We went 7 yrs with NO seizure activity at all and now we seem to be seeing them on a daily basis. Faith (my daughter) had been on Depekote her entire life for seizures with no issues at all. The medication seemed to be controlling her seizures and she was a very very happy little girl. In February 2011 she went into a Grand Mal seizure, which after administering rectal Diastate, she went into another one. Since she had just had VP shunt surgery in Sept 2010 we were concerned it was related. The local hospital took CT scans and x-rays to determine it wasn't her shunt at all, but that she had hemorrhaged in her left frontal. She was then taken to Pittsburgh Children's Hospital (which is about 2 1/2 hours away) because that's where all her Specialists are located. It was determined she had a cavernous haemangioma. Since then she has experienced 2 additional small bleeds in the same place. Initially the doctors believed that the Depekote, Von Willebrand disease (blood disorder...which had never been found, even after several surgeries and blood work) and low platelets aided in the hemorrhage. After the 3rd bleed, the doctors more so believe that she was actually born with the cavernous haemangioma and that the Depekote, Von Willebrand and low platelets only caused it to burst. Since the initial bleed in February, we have seen more seizures than ever. They immediately took her off Depekote in February and started her on Keppra. After months of being on Keppra, while there was no seizures, she was not a happy child at all. Completely the opposite of what we knew her to be. She is non-verbal so cannot communicate to us what is going on inside her. At almost 13 yrs old, she is probably at 8-10 month old level. She is unable to walk and must be treated as a baby where 24/7 adult supervision is necessary. With that being said, we knew that she was not the same little girl. Seeing the Neurologist, she advised us that Keppra is known to cause the moodiness and changes we were seeing in her. So, we began to ween her off the Keppra and started Vimpat. The day AFTER her last dose of Keppra (which was 1 mg liquid), she went into a Grand Mal seizure. Hence the 2nd hemorrhage. This happened just the last few weeks of Oct 2011. A week later, another grand mal seizure... which was found the 3rd hemorrhage. Neurosurgeons determined the cavernous haemangioma to be in the left part of the brain which controls gross movement and said that if they were to go in and perform surgery that they would almost guarantee loss of movement on her right side. They advised us that until the hemorrhages resulted in permanent paralysis they would NOT do the surgery. About a week into her full dose of Vimpat (4 tsp 2x daily), she started having "convulsions". Her entire body would jerk as if it were going to start into a seizure, but only happen 3-5 times and stop. She was alert and awake the entire time. The Neurologist seemed to think she was experiencing Spasticity (which we questioned since she is so Hypotonic, not Hypertonic). About a week after she started the "jerking/convulsing", she had another Grand Mal seizure (Saturday), in which we administered the rectal Diastate. After this, and since then... the "jerking/convulsing" has completely stopped. The next day (Sunday) she woke up... I administered the full dose of Vimpat and approx 30-45 min later she lost complete movement on her right side. It mimicked a stroke. Approx 30-45 min after we saw these symptoms, she gained back movement of her right side. Since then, still no signs of the "jerking/convulsions", however every morning... like clockwork.... she experiences the paralysis. We see no seizure, just the loss of movement on her right side. She was taken to a local hospital after the paralysis on Sunday and after doing CT scans, x-rays and blood work they confirmed no new bleed and no changes. They sent us home, upon advice of the Specialists at Children's Hospital. Her Neurologist since has put Faith on Klonopin to see if it would bridge that gap until her Vimpat leveled out in her bloodstream. Still see the paralysis. Now she has put her on Trileptal and we are currently weening off the Vimpat. She is considering keeping her on one dose of Klonopin at night. As you can imagine.... after going 7 years with NO seizure activity at all.... this is completely new to us. I guess my biggest thing is why all of a sudden has the "jerking/convulsing" stopped after the one seizure and now she's experiencing the paralysis around the same time every morning??? I found a link regarding "Todd's Paralysis" and that describes her symptoms to a "T". Anyone have any insight??? I would greatly appreciate any responses. Thank you very much.

 

[Nakamova]

Hi sweetFaith98, I just wanted to welcome you to CWE, and wish you the best with your daughter's diagnosis and treatment. It's sounds like the recent acceleration in her seizures may be at least partly related to the cavernous haemangioma. Those are known to cause seizures, and the symptoms can worsen with age as the haemangioma grows. Another factor might be related to your daughter's age -- at 12, hormones and other aspects of the metabolism change more dramatically and cause fluctuations that trigger seizures in an already vulnerable brain.

The VP shunt and the underlying intracranial pressure may be a factor too. There is a high correlation between hydrocephalus and seizures, and children who have been shunted for hydrocephalus and who have cognitive delays or motor disability are more likely to develop seizures than those without delays -- possibly due to malformations of the cerebral cortex.

Todd's Paralysis tends to be a temporary (rather than recurring) condition such as your daughter's. But the right-sided paralysis does suggest similar kinds of seizures occurring in her motor cortex. The jerking she was experiencing is called myoclonus, and could be caused by the changes in medication. Certain anti-seizure meds (such as Depakote and Keppra) work much better against jerks than others, and some, like Trileptal, can actually cause them. Vimpat is fairly new, so there isn't enough conclusive data one way or another, but for some folks have reported that it makes their myoclonus worse. I hope the Trileptal doesn't exacerbate your daughter's symptoms, but if the jerking symptoms re-cur it may be due to the med.

Best,
Nakamova