August 3, 2013 Around 4:15 in the afternoon Ayden began jerking
again. We were at my grandmothers house. I had a weird feeling about going. I had that mother's intuition that he was going to start having seizures. I wanted to believe that was not the case. I had told my grandmother we would come visit so we did. He was in the living room and I thought I saw one. In denial I did not say a word. A little later I saw another. Still not saying a word I packed him and all his things up and we headed home. Something I have always done when he starts having seizures. I just need to be home and sometimes alone. My grandmother didn't understand at the time and could not comprehend what was going on. I, as his mother knew exactly what it was. He had around 10-15 that day.
Aug 4, 2013 The jerking
is still going on around 10-15 an hour. Yes 10-15 an HOUR!!!!
Aug 5,2013 I email Dr.
Sharp and he sends us to ACH to be admitted for 24 hour EEG.I told him that I needed to know if these "jerks" were seizures which indicates irregular brain activity or just "jerks". The EEG indicated the
jerks are myoclonic seizures. Dr.Kenneth Habetz was holding him when he had
one. He told me immediately that they were myoclonic seizures without looking at the EEG. They released us because they caught what they needed to see. They
increased Keppra to 3ml 2x a day. He had so many "jerks" we were released within three hours.
Aug 6,2013 The seizures
are still happening quite frequent. They seem to get worse when he gets on
hands and knees to crawl. Around 3:00pm they are increasing in severity and amount. By 4:30-5:00pm he is having
multiple ones per minute. He is having them almost non stop- about every 5 seconds. I call the on call Neurorologist and speak with Dr. Sharp (luckily) he
advises us to come in through ER. They seem to slack up after I gave him Keppra at
5:30 (3ml). We waited out the night. I figured we would all rest better at home than in the hospital.
Aug 7, 2013 Ayden woke up
having the seizures about 10-15 an hour. I called Dr. Sharp again and we went to ACH and were admitted. They
took about 18ml of blood (yes- thats alot). They are testing his chromosomes and metabolic
levels. (genetic testing). They planned to do a Lumbar Puncture(spinal Tap).
Aug 8, 2013 Around 5:00pm they
took Ayden back for LP without sedation. They had to take 10ml of fluid which the Radiologist told me was a lot for a baby. It could cause a really bad headache. That is over
double a normal LP for a baby. They did it in Internal Radiology so they could
guide the needle. The radiologist called to tell me after the procedure to make note for him to
NEVER have this done again without sedation. She said he was fighting them
tooth and nail. Only if critical condition to allow without sedation. He came back wheeled in on a wagon laying completely flat. That is by far the saddest, scariest, worse heart wrenching feeling I have ever had. It was completly unimaginable. No parent should EVER have to see that. I laid with him in the bed until a nurse came and said they had
to come back in and get 2ml of blood to go with LP. Really??? You need to poke my baby once again when we have sat here all day doing nothing waiting on y'all. He has been through so much already. No matter what we said they went ahead and poked once again. They blew veins. It was HORRIBLE. I was crying, his daddy was crying, my mom was crying, and he was SCREAMING!!!
Aug 9, 2013 The results
that they have back are all normal. The spinal fluid taken was great. NO blood was in it which is great. They discharged us from the hospital with a medicine called zonagran. Here we are with yet another medication when I am scared of the first one. (Note: no one has told me he has epilepsy.) I did not have to give the new medication but they sent us home with it as a next step.
August 10, 2013 Ayden is still having seizures. That afternoon they became intense. VERY INTENSE!!! Happening every 5 seconds for around an hour so I gave the zonagran (25mg) they
sent home in case we wanted to try. He only had about two more the rest of the night.. Praise Jesus.
August 11-12, 2013 Very few seizures- continuing the zonagran-
25mg morning and night.
August 13, 2013 Seizure
Free
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