The Seizure Files

Since I cannot remember who I have told what, mostly due to exhaustion from the whole ordeal I will sum it up here with a cut and paste approach from different postings from my yahoo groups and personal e-mails.

Seizure #1
First of all for those who don't know Isabella had a series of seizures the day after immunizations while I was out of town with my parents. She turned a blue color around her lips and that is when we called 911 and went to Bartow Regional via ambulance. We thought this was related to her immunizations but due to the severity we made an appointment with a peds neurologist. We were seen for an EEG and had an appointment set up for the neurologist a few weeks later. she had a history of febrile seizures in China, only 2 both last spring.

She went in for a sleep deprived EEG (oh what fun for sleep deprived mom) in which she screamed bloody murder, and then went to sleep on cue. We were called the next day and asked to come in immediately. Of course this terrified me. This is what we found out.

What we know:
Isabella has multiple spikes (indicators of seizure activity and potential for) in all areas of her EEG. Wake, sleeping, and with the strobe light. They feel she is at very high risk for continued seizure activity and appears that she has been having some petimal seizures throughout the day. I apparently missed the boat on this one. I had put down her lack of response when talking to her to the hearing problem she is having and the blinking episodes to being Izzy.

She had a lot of spikes located in one section of the brain that they want to investigate further with a sedated MRI with and without contrast (Teresa B, I think this would be a good time to visit FL as this is right up your alley). They do not know what is causing it and it is a concern. There are many things that could cause it, but we are going to try and be positive and not speculate on all of the possibilities.

She is going to be on Depakote 2 times a day for the next 2 years before they will consider taking her off of it. We will carry emergency medications, Diastat, everywhere for the next 2 years and must be seen the next day after having a seizure.
She is never to get the Pertussis component again and will have a DT instead of a DTaP.

She will see the ENT next for her chronic ear infection.

The doctor was impressed with Izzy’s overall physical condition and stated that the children she sees from China are in much better shape than some of the other countries, but Izzy really appears healthy and well cared for. She reviewed the medical records/pictures and was shocked that foster care alone without physical therapy was able to improve her physical and cognitive development so drastically. She said her arm in the initial pictures appeared to indicate CP but it would not have improved and even a contracture would need therapy (her foster family really did a good job with her). She was puzzled that the physical exam did not correlate with the readings on the EEG.

My stress level is still very high and will be until this MRI is done and we know everything is okay or at least know what we are dealing with. Our attempt to obtain blood today was unsuccessful with 2 sticks, one to each arm and no blood. Due to the large number of test ( typical post china test), and the test for the neurologist, and then the follow up drug levels we are looking at least 3 blood draws over the next 2 weeks I can only hope that each one does not require multiple attempts. Right now the earliest sedated appointment for the MRI is the end of Jan. I am going to continue to call around in hopes of a cancellation.

After talking to a good friend last night that has spent a lot of time with Izzy, I feel better about the situation from the standpoint of I think it is going to be something manageable, and not some horrible diagnosis. She is so active and vivacious, each day she seems to blossom more; it seems unlikely that this could be a progressive, debilitating diseases process.
Thank you again to everyone, continued prayers are very much appreciated as well. I will update you all as I know more.
Trish
(mother to the very bizzy IzzyB)

Seizure #2
The Sat. before Christmas, just days after seeing the neurologist, Izzy woke up her usual self full of P&V. We were trying to play quietly as not to awaken the boy child. This consisted of her running around like a banshee in our bedroom with me saying shhhhh, don't wake GeGe. Suddenly she was limp on her R side and kept falling over. She could not sit up and looked like she had a stroke. We were told to take her to APH (the children's hospital) and by the time we got there she had at least one seizure and was limp as a rag doll. After i was thoroughly searched by security I was allowed in. The rest was the worse care i had ever experienced and will be left for my "What is wrong with health care" post. They gave her a loading dose of depakote without checking a level, and sent us on our way. We made it through Christmas (also another post) and saw the neurologist The next day.

F/U Neuro appointment

We saw the neurologist yesterday who ordered a stat MRI with and without contrast and yes sedation. Well she was out all last night and still couldn't walk until after 2 pm (when she got up from her nap) today. Chloral hydrate is some powerful stuff. I will say it is the quietest she has ever slept. The people at the radiology center were great.

The radiologist talked to me right after the scan. He found no masses, bleeds or aneurysms. Apparently the neurologist was really looking for a old or new stroke or pathology due to the abnormal firings on the EEG in the left hemisphere. Well today after the full and careful reading was done she called to say that Izzy's left temporal and parietal lobes are smaller than the right. It is probably a congenital abnormality or resulted from poor nutrition and stimulation as an infant. She hopes she will grow out of the seizures but is not sure and we need to do some real stimulation and so forth with her. I need to get her evaluated by developmental services.

So I feel much better knowing what we have to deal with. The neurologist is still so surprised at her lack of motor deficits with the findings. I am glad she did not start this in China.

Tomorrow, more blood draws. I am surprised with all she has been through that she still gives me hugs and kisses. What a hard 7 weeks home it has been for her. Thank you for every one's prayers and support.

Trish