To give a little background on this post: Jackie this past fall experienced epileptic seizures. We went to a Pediatric neurologist in SLC and started her on a medication to prevent them. We figured out that she is proned to having seizures which is different than actually being diagnosed.
Jackie this weekend experienced 5 seizures on Saturday. We are not sure why they happened or what caused them. These seizures where much longer than her previous ones back in September. They lasted 4-5 minutes with stiffness and/or limpness in her body, right leg twitching, left hand clasped tightly, smacking of lips, chewing on tongue, dilated eyes, unresponsiveness and some gulping. This was pretty scary b/c you can't do anything. After the second one occurred we took her to the ER and spent 5 hours there. While in the ER she had three more seizures. They were able to get her out of the seizures quicker with oxygen and medications. Her blood was taken, urine samples given and she had an IV. She now has been diagnosed with epileptic seizures.
Rachel (my sister) had come up for the afternoon and was with me in the ER while Troy stayed home with Marissa and Jared. The doctors ended up increasing her medications for the seizures and gave us an emergency drug (rectal drug) if she has one seizure. If she has more than one a day then we are supposed to take her to Primary Children's Hospital to be seen ASAP. The ER doc recommended us going there b/c they have the proper equipment for Peds.
Today she has been VERY cranky, lethargic and hungry. The neurology specialist told us a few weeks ago that when you increase the dose, the side effects take longer to get over. They are irritably, upset stomach, dizziness and fatigue. That explains today's "mood" and why she threw up her breakfast. I am hoping she doesn't throw up her dinner later tonight. She also has had 6-7 "loose" bowel movements with HORRIBLE gas.
We will try to go in tomorrow or Tuesday to our neurologist to help figure out the causes of the seizures and control them. Something I do speculate is, I think the seizures might be associated with her "teething". But that is my opinion.
Sunday, February 21, 2010
Wednesday, January 27, 2010
Update on Jackie
Jackie's status:
Jackie has had torticollis since she was born. We have been working on it with physical therapy and a botox treatment to help fix her "tilt" of the head. We also did helmet therapy to fix the shape of her head due to the torticollis. Now more than a year late she has relapsed b/c of us being sick every month in the fall (she was fatigued and that doesn't help with the strength of her neck) and her not wearing her glasses. We went to our physical therapist and they recommended seeing the specialist again. Here is what we concluded:
Went to Pediatric Rehabilitation Specialist again and they agreed she is not a candidate for surgery!!!!!! She is on the fence whether or not she needs botox again. About half to 2/3rds of their patients, this is common to receive botox twice. We are going to get a second opinion about her eyes to see if the vision might be a problem with the torticollis. In about 1/4 of patients there is an underlying problem with the vision called: 4th cranial nerve palsy.
She actually has gotten better with the tilt in the last month, b/c we have been more adamant with the glasses.
Secondly Jackie is proned to small seizures and is currently on a drug to help get rid of them. We found this out in the summer after receiving the botox treatment. It is a good thing we are getting most of these medical treatments taken care of.
Jackie has had torticollis since she was born. We have been working on it with physical therapy and a botox treatment to help fix her "tilt" of the head. We also did helmet therapy to fix the shape of her head due to the torticollis. Now more than a year late she has relapsed b/c of us being sick every month in the fall (she was fatigued and that doesn't help with the strength of her neck) and her not wearing her glasses. We went to our physical therapist and they recommended seeing the specialist again. Here is what we concluded:
Went to Pediatric Rehabilitation Specialist again and they agreed she is not a candidate for surgery!!!!!! She is on the fence whether or not she needs botox again. About half to 2/3rds of their patients, this is common to receive botox twice. We are going to get a second opinion about her eyes to see if the vision might be a problem with the torticollis. In about 1/4 of patients there is an underlying problem with the vision called: 4th cranial nerve palsy.
She actually has gotten better with the tilt in the last month, b/c we have been more adamant with the glasses.
Secondly Jackie is proned to small seizures and is currently on a drug to help get rid of them. We found this out in the summer after receiving the botox treatment. It is a good thing we are getting most of these medical treatments taken care of.
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