Remember when Luke went to UCSF Genetics last February? One of the things they recommended was a spinal tap. After wrangling through insurance bureaucracy, finally getting approval, and waiting for scheduling, that procedure, along with a muscle biopsy to check for mitochondrial issues, was performed yesterday.
Paul and Luke got up early and went to the hospital. Arrival time was 6, and the procedure started around 7:30 and lasted until about 9.
This was at least his 3rd time under anesthesia, and he did fine with it.
Paul was not told when to expect results, but they'll come to us through Luke's neurologist's office. We had an appointment for January 2, but they called last week to cancel it. We'll need to get a new appointment scheduled, but it's a challenge, since he's only in the office two days a month. We're still waiting to hear the results of Luke's last MRI, which was done in October.
Blood was drawn for genetic testing last month, but they said 3-4 months for that, so I'm not expecting anything until around March.
We were given the green light to increase his seizure medication from the nurse at the neurologist's office, but we're still seeing multiple seizures per day. We haven't hit the max for his weight yet, but I'm wondering if we are headed for trying one of the other two seizure medications for children. This one doesn't seem to be doing the trick for him.
Little boy, you are a puzzle. I wish I could see the picture on the box to make some sense of it all.
Prayers for you -- waiting is the hardest part of all. Sometimes I think these kids of ours read the instruction manual, but only so they know what NOT to do to confuse us more!
ReplyDeleteAt this point, we've been waiting for 18 months for answers. It's become our new normal. I might not know what to do with myself if we ever got a final diagnosis.
DeleteMany positive answers that in the coming months you get some answers!
ReplyDeleteThank you, Stacy. I guess in the end, it doesn't matter what the label is, we'll still be trying to manage the issues.
DeleteI hope you can get his seizures under control. We went through finding the right meds and so far tripleptol has been working for us. Hope you can get in soon to the neurologist. It seems to take forever to get into ours. Will be keeping you guys in my prayers.
ReplyDeleteThat's good to hear!
DeleteIf I had any kids that looked to be pre-med, I would totally point them into pediatric neurology as a job that NEEDS more providers!
it would be absolutely demanding the first appointment at the doctor is in the office!! that stinks that you had to wait so long for any answer!! always praying for you Luke and the whole family,Keep hanging in there mama!
ReplyDelete*I would
DeleteMurphy's Law being what it is, I'll have to see if Paul can get the day off work first. Because usually the doc's available day conflicts with about half a dozen other things going on around here. But yes. I need to keep calling them. I wish they had reached ME when they called to cancel, as we could have rescheduled then, but they left a message on my answering machine, so it's phone tag (and holiday office closures) for now. :sigh:
DeleteSending so many warm wishes to you for 2015, Shecki. May 2015 bring all our families joy and peace.
ReplyDeleteThank you, Jennifer! A very happy new year to you and yours, as well. :)
DeleteI'm sorry it's taking so long for you guys- I work for the NHS in the UK and we are used to complaining about wait times but nothing close to what you seem to be undergoing! Hopefully there will be some answers soon.
ReplyDeleteThank you! :)
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