We finally met with the neurologist this afternoon to go over the results of our 72 hour video eeg. The recording captured seven “episodes.” Two of the five episodes were determined to be seizures – these were the “big” ones I talked about where she goes very stiff – then shakes and then goes limp. During these, her eyes rolled up and to the left and her O2 stats dropped and her lips turned blue. They are being labeled Tonic seizures. She also was “out of it” following these episodes.
The rest of the episodes – which are the majority of what we see on a daily basis are NOT seizures. These are her “vacant” staring spells, her tremors upon falling asleep and waking up, and her “jerky” moments throughout the day. NONE of these registered any change on the eeg. Basically these are simply a result of autonomic dysfunction associated with Rett Syndrome.
Brooklyn has been on Lexapro for about a year for anxiety (everything her body deals with daily because of Rett) – we have chosen to start there. She has gained SIX pounds since the feeding tube was placed in July (YEAH!!) We have seen her “episodes” increase in frequency and duration since the weight gain – we hope by increasing her lexapro that might “level things out” a bit. Since we do not want to change two meds at once we are holding off on starting seizure meds – which (should we start those) would be either Keppra or Zonagran.
Her neuro wants us to track the “big” ones over the next three weeks (when we have our return visit) while she adjusts to the increased lexapro dose. We want to determine how often the tonic seizures are happening and how long they are lasting. We do not want to medicate too soon if it is not necessary. On the other hand, I do not want to hold off on a medication that might get rid of them all together….UGH! These are not choices I anticipated having to make when I became a mother :(
Her pulmonologist (who has a niece with Rett!) was very nice but to be honest did not have much input. Her breathing issues were basic Rett problems – the breath holding and hyperventilation – he is glad we have the O2 at home if she needs it but his main concern is aspiration (which Brooklyn does not currently have trouble with – and praying that stays a non issue!) He recommended a sleep study just to make sure that she is not silently aspirating at night but was thrilled that the eeg showed NO nighttime seizure activity!
So….it is a watch and see for now.
I want to thank ALL of you for your prayers and kind words of encouragement over the past few weeks. Please continue to pray for Brooklyn – unfortunately until our cure comes and we get rid of Rett Syndrome completely there will always be a battle for us to fight!