Hannah's EEG - Nov 2010
Hannah had her EEG today at her new neuro’s office.
The past 5 EEGs she has had, including her 24-hour EEG in the PICU this summer, had all comed back normal.
Today’s was not normal.
Hannah had fallen asleep pretty much immediately after the test began, so they were able to get a clean EEG. Once she had fallen into a deeper sleep, her nurse and I noticed the seizures on the screen. The EEG tech also confirmed they were seizures (even though she was not supposed to). They were happening every 30 seconds or so towards the end of testing when she was in a deeper sleep.
The interesting thing was that what we thought was Hannah’s movements from her movement disorder during her sleep was actually seizure activity. Every time Hannah twitched in her sleep, a seizure was noticed on the EEG (see pic on the left side – that is a seizure).
What this means? Progression, obviously. However to what extent is what needs to be researched. We meet with the neuro on 12/3 to come up with a game plan. She is already on Keppra so does that mean the Keppra has been blocking some of the seizure activity perhaps, maybe not?
I talked to Dr. Goker-Alpan, Hannah’s pediatrician from the NIH, today afterwards. She reassured me that these seizures are somewhat common in type 3 patients and are not as worrisome as I felt they were. The fact that she is not becoming hypoxic, her O2 saturations don’t drop, and she does not have any shaking activity means that it is not as intense as I feared. I’m going to send her and her other specialists a copy of the EEG report when I get it.
Progressive myoclonic epilepsy is documented in kids with neuronopathic Gaucher disease. After reading the description on Wikipedia, it sounds like it could match the symptoms Hannah has. “Myoclonic seizures involve brief involuntary muscle twitching, and may become frequent enough to be disabling….Tonic-clonic seizures have two phases: the tonic phase may last a few seconds and involves the muscles tensing, and may lead to the person falling down; the clonic phase involves a convulsion of rapidly alternating muscle tensing and relaxing. Neurological dysfunction includes difficulty coordinating muscle movements (ataxia) and a decline in cognitive ability (dementia).”
Regardless, it just sucks.
Carrie
Thanks for the update on Hannah. I am so concerned about your little Hannah. I agree with you–it does suck. You must be a wreck inside, and yet you are strong and defiant & determined to fight this damn disease. Bless you sweetie
Oh Carrie, I am so sorry. Noah has been having toni-clonic seizures but just becomes very stiff with no obvious twitching or spasms like what we typically on tv. No convulsions. But he does have 24 hr seizure activity. His dose is not correct yet and the side effects of the keppra have been aweful for him. His is having outbursts like flipping desks at school that did not exist before. I am terrified of what this new diagnosis means. We have to go back to cincinnatti for more evals. I feel for you and admire you so much for your strength and tenacity. It is so obvious where Hannah gets her fighter spirit from. Hugs and prayers for you all
I’m so sorry Carrie… it has to be so frightening to see that. You are just the strongest person I know. We pray for Hannah and you and Robert daily.
Love you!
Carrie-
I’m so sorry to see this on her screen. I hoped and prayed you would never have to deal with this. I know how scary it is to see the subclinical activity on the screen. Thankfully she is already on Keppra. If you need anything I am here for you!
Hey- liv is totally having these… we declined an EEG for now because she’s already on high doses of phenobarbital. Spok to Dr. Alpan as well- and the biggest thing is to adjust the medication when seizures are prolonged (close to an hour) or make her turn blue. So we are doing just that. I hate it- I hope Hannah doesn’t start biting her tongue. Olivia’s is terrible (it looks forked now). Sorry to hear that hannah is showing progression. It sucks.
Dang, not what you wanted to hear. Though I’m reminded again how lucky you are to have so many doctors out there as resources and on looking out for Hannah. {{{hugs}}}
Gosh, that’s upsetting to hear. So am I understanding correctly that if or as the seizures continue they will result in dementia? It’s good to see that her physical therapy is moving forward so will that counteract the effect the seizures have? Stay strong. You and your family are in my thoughts.
Have a wonderful holiday. Enjoy every moment. Much love.