Today I spoke to neurology and to palliative care about Joel's irritability and his seizure activity.
The neurologist decided to up his gabapentin, and palliative care said that it could even be upped a fair amount more if this does not work. That relieves me, because one thing I often worry about is running out of options. I'm always happy to know there is still a trick left in the bag, so to speak.
They also told me that it was not necessary to bring him in for another work up. Whew. I'd have done it, no problem, if they thought it was a good idea. But like I have already stated, there hasn't been any other symptoms, it looks very much like what happened last year at this time. So I'm glad they felt it wasn't necessary.
Otherwise it would be a trip to the ped for the "move all the limbs, poke the tummy and check the ears and eyes." And a bunch of x-rays. And an ultra sound. And blood work. And this would mean either a lot of separate appointments, or even worse, a hospitalization. I'm so happy to skip it all and try what makes the most sense, upping the meds.
Palliative care also said that it was ok to use the clonidine I give him at bedtime for the times when he is inconsolable. Which was good to know, specially as I already had the go ahead previously and so had used it this way a few times. They did say that I might find that even a half the dose would work, and would not make him so sleepy. It leaves the system quite quickly and so can be used 3 or 4 times a day at proper intervals. It's not something I prefer to do, but like I said, I'm always happy to know there is still a trick left in the bag.
Because listening to your child cry is exhausting, and it works on my spirit even when I think I'm "tuning it out" emotionally, staying calm and collected and all that. It's pretty awful, even when you are trying to keep your emotional equilibrium. So I'm hoping that the seizures stop. And I'm hoping the crying stops. And I'm even hoping for the smiles to start up again.
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