Seeing the Neurologist

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Yesterday we saw our neurologist, Dr. Mikati, for the first time in over 6 months. I came armed with a long list of questions as well as clinic notes from our visit at the Cleveland Clinic with Dr. Wylie last December. At our last appointment with Dr. Mikati in late January, Ezri was doing so well that it seemed reasonable to schedule our next appointment for six months later. Off we went with a script in hand for a new medicine (Onfi) to try if Ezri was having a difficult day of increased seizures; but not necessarily as a regular medicine. We tried the Onfi a couple of times, once at the 2.5mg starting dose and then another time at 5mg dose – neither did much of anything, including reducing seizure activity. Then Ezri got a bad cold in late March and her day to day life became much more difficult for her seizure-wise and cognitively. This lasted more than two months and all we wanted was for our late July neurology appointment to come quickly so we could talk about trying something new. In late June, when it was feeling like the appointment was finally right around the corner, the doctor’s office called to say the appointment would have to be rescheduled – would late August work for us? I told them no, we had been waiting and waiting for this appointment and had been having a difficult time and we needed to see him sooner than later (I have definitely found my ‘voice’ along this HH journey, despite being very shy socially). They were able to reschedule it for only about a week later than the original appointment. While Dr. Mikati is incredibly busy with many patients, he is extremely knowledgeable, and I feel like we have fostered an important trust that has taken much time and is invaluable, especially for HH patients (he doesn’t dispute us about what is seizure related and what is not). The appointment started off with Dr. Mikati asking about the Onfi and I told him there was no difference. He then suggested we try giving it on increased seizure days at an even higher dose, 7.5 mg or even 10mg (the highest dosage for Ezri’s weight). I told him I didn’t have a good feeling about this medication because a) it was in the benzo family which had negative results for Ezri (i.e. drunk, angry toddler on clonazepam), and b) because even at the 5mg dosage there was no difference. Even so, we would certainly be willing to try it. I then asked him about some of the meds we had been talking about with neuropsychiatry: Nuedextra, which is for psuedobulbar disorder (Dr. Mikati was not enthusiasticabout this, but thought it might be worth a try) as well as Tegretol, a seizure med we haven’t tried, but works in parts of the brain dealing with emotion. Tegretol is what we’ll be trying next and I’m trying not to get my hopes up too much…We (my mom, who sees Ezri very frequently, always comes to these appointments with me and is such a help when I’m not able to articulate exactly what I mean to say) also asked about getting some PT and OT prescriptions as Ezri is not able to get these therapies through the school system any longer because she’s not behind enough in these areas. But she definitely still needs therapy (she can’t run or jump or climb like normal children and has a lot of trouble with writing due to injuries from that first surgery of hers – she is a right handed person having to use her left hand due to right sided weakness). We should have asked for this a couple of years ago; though this type of thing is easy to slip one’s mind when discussing other issues such as seizures and meds. Dr. Mikati also suggested seeing a developmental pediatrician as added input for getting what we need from the school system. In addition, I questioned what the SPECT imaging from Cleveland meant (inconclusive) and why and what other types of imaging might be useful to further pinpoint Ezri’s seizure activity and hopefully a seizure focus. More than anything I want to find a way to stop Ezri’s very frequent sad feelings that are so miserable for her – I don’t even care about the occasional gelastic she has because she’s so genuinely happy during them, but the sadness is heartbreaking for all of us. Dr. Mikati had done a DTI (diffusion tensor imaging) scan done as part of a previous MRI, and I asked about that – apparently it’s not conclusive enough to prove anything. And I asked about fMRI which I’ve been reading about and is able, with good resolution, to show seizure activity, though difficult to get a good scan (patient has to lie perfectly still, have a seizure, and communicate with the technician).At 5-1/2 years old, Ezri is not at a point where this is possible. However, Dr. Mikati is willing to revisit this and would personally work with the doctors who would be doing the imaging in order to eventually try and make this happen. As Ezri’s mom, I feel very hopeful in this aspect because I know that we can take her off her Keppra and it will make all her crying spells turn into back to back staring spells (so we can easily cause numerous seizures for the scan) and with the staring spells, she stays quite still and just ‘spaces’ – perfect for the needing to stay still aspect. I feel a lot of positivity from this appointment – Ezri will be starting PT and OT which I think will help her tremendously, seeing a new doctor who specializes in developmental delays, starting a new med (keep your fingers crossed it helps!) and also given the *hope* that an answer might be found (and a doctor willing to try) as to the source of Ezri’s crying, even if it is a few years off. Oh, and when he suggested another appointment in 6 months, I quickly said that as up and down as things can be for Ezri, we needed to see him sooner – and he was happy to have us schedule an appointment for 3 months…

Here’s Ezri in the waiting room at the doctor’s office:

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