So... we have had an active time in the last few weeks. After 11 months with no seizures, Amanda has had 4 in the last six weeks. She has also had an increasing number of headaches. After a seizure on Sunday March 6 and severe head pain on Monday March 7, we headed to the Duke ER to make sure there were no changes in her pressure or aneurysms. We remained in the hospital at Duke until Thursday March 10. During that time, a CT, MRI and MRA were performed and everything appeared stable as far as her shunt and aneurysms. The consensus on the severe head pain was that the episodes must be migraine related. A few weeks before, we had seen Dr Wooten and he thought Amanda had been fighting a migraine cycle over the past couple of months and he prescribed prednisone to try to break the cycle, which unfortunately it did not (it worked last year when we had a problem). So, in light of the Duke findings, he started her on a blood pressure medicine called Atenolol to fight the migraines. She started on that med on Thursday night and by Friday morning, she was a new kid. She had a great day Saturday, although she had one bout of minor diarrhea on Saturday night.
Sunday was a different story. By the time we called the ambulance, Amanda had gone diarrhea 15 times and was throwing up violently and we knew she would have no ability to keep her seizure meds down in that condition. She was taken to NHRM in Wilmington and treated first in the ER and then admitted to the Children's Hospital, where we subsequently found out that she had a virus called Rotavirus, as well as a parasitic infection called Giardia. Both of these are likely to be "unintended gifts" from her stay at Duke Children's Hospital. There is no way to tell for sure but since she is hospital homebound schooling and doesn't get out much, that is the most likely theory. Unfortunately, so many medical personnel continue to "wash" their hands with hand sanitizer but hand sanitizer is not very effective against many stomach bug type germs.
Since Sunday, we have been at NHRM being treated for the Rotavirus and Giardia. On top of that, Katie got diagnosed with Type A flu on Monday and I (Susan) got diagnosed with Type A flu on Wednesday, despite the entire family receiving flu shots each year. Thankfully, Amanda has dodged the flu thus far. She is being treated with flagyl for the giardia and is making good progress. The bouts of diarrhea are becoming less frequent and she is off her IV and taking food and water orally.
Everything was going relatively smoothly until yesterday at about 6pm when she started having severe head pain again and her blood pressure rose to 145/58. The next 4 blood pressures were similar until she was given more atenolol and then the pressures starting going all over the place - up to the high 130s then down to the 40s and everything in between. She even had a blood pressure of 38/22 at one point. Over the next 18 hours, her blood pressures continued to jump all over the place and she continued to be very agitated. Her pulses jumped everywhere from the low 60s to over 115 as well. About noon today, her blood pressure and pulse stabilized and she has done well ever since. Tonight her blood pressure is holding a little low at 71/42 +/- so hopefully she will remain stable throughout the rest of the night. If so, we may be able to go home tomorrow.
So what does this all mean? We have talked to her neurologist and neurosurgeon and there are a couple of hypotheses. The blood pressure changes could be from the migraine activity or they could be from a problem with the tip of her shunt or from some residual tissue that was left in at the time of Amanda's hemispherectomy that is now typically taken out. The neurosurgeon from UCLA would like her to come out for an evaluation to see if they can isolate what is going on. If the changes are only migraine related, then maybe the Atenolol will be the fix. If the tip of the shunt is the culprit, she may need a shunt revision. If it is residual tissue, then a bunch more tests will need to be run and it is possible she would need another surgery. While that is not our favorite option, we would consider it if there were good odds that the problem would go away and that she might be able to reduce or eliminate her seizure meds. So, we will have some big decisions to make in the coming weeks as we learn more about what might be causing her headaches, increased seizure activity, and recent blood pressure fluctuations.
So why do I post this type of detail on her blog? It gives me one place to keep very important information regarding her health that is easily accessed and it also keeps people who love her updated and gets the word out to her wonderful prayer warriors. Thanks for all the prayers, love and support over the years. I will post again when we know more about God's most precious little angel, Amanda. May God be at the center of your lives and bless you and your families richly.
Susan
