The day came that is a mothers worst nightmare, the doctor walked in and said Mariah had Lennox Gastaut syndrome!!(Is a severe form of epilepsy.) Seizures usually begin before 4 years of age. Seizure types, which vary among patients, include tonic (stiffening of the body, upward deviation of the eyes, dilation of the pupils, and altered respiratory patterns), atonic (brief loss of muscle tone and consciousness, causing abrupt falls), atypical absence (staring spells), and myoclonic (sudden muscle jerks). There may be periods of frequent seizures mixed with brief, relatively seizure-free periods. Most children with Lennox-Gastaut syndrome experience some degree of impaired intellectual functioning or information processing, along with developmental delays, and behavioral disturbances. Lennox-Gastaut syndrome can be caused by brain malformations, perinatal asphyxia, severe head injury, central nervous system infection and inherited degenerative or metabolic conditions. In 30-35 percent of cases, no cause can be found.) My heart sank, the tears rolled down my face because I already knew what it meant!!! It took me a few minutes until I could talk but I stood up and said "what do I have to do" The doctor said "we are going on the ketogentic diet today!" I am know weighing all her food and making sure I have the right amount because if I didn't it would have threw the diet out the window, it was tough I had a child that could not have birthday cake at her friends birthday, it was very hard to explain that to a 4 year old. The day came where the seizure where back as strong as ever, every time I turned around she was on the ground seizing .. I couldn't keep up with the seizures... She was having 150 a day...
We were back in the hospital as my parents and I was begging for answers, just something to let us know anything at this point, still no answers! The surgeon had came in to talk to us and said "this is your best option is to have brain surgery, the doctor wanted to do 3/4 corpus colostomy to help control the seizures. I had three days to prepare for a brain surgery for MY ANGEL, I cried, sleepless nights, everything you could image I was going through... She did great after surgery was up walking, talking, I was hoping this was what we needed to do to get rid of the seizures!! NO SUCK LUCK!! Mariah was seizure free for 4 days. We had fewer seizures in everyday life but no control... It was six months later the surgeon came into the hospital room again and wanted to complete the corpus colostomy all the way and put a VNS in to help control better!! It took me a couple of days to decide if this was our best choice because her left and right brain cannot communicate any more... We decided to go through with it... It took her a little longer to come back around but she did!! Mariah was seizure free for a little longer this time... the seizures returned!! Now what?? We have tried every medicine and medicine from Canada...
The end of February Mariah got really toxic from a medicine, she was VERY sick!! The doctors would not take her off the medicine that was causing all of this sickness...I begged, I cried, I felt helpless!! I finally put it in GODS HANDS I could not live everyday like this!! The next day the doctors said it is time to go somewhere else; we are sending you to Memphis Tennessee... After six long weeks of the battle the doctors took her off of this awful medicine!!
We are now facing the fact that Mariah will not eat or drink anything. I took her to the doctor on Wednesday of course back in the hospital we went because of dehydration... The doctor decided it is time for a g-tube to get nutrient into her system, but she was to malnourished to go into surgery. The doctor put a PICC line in and is getting TPN... She is scheduled for surgery Tuesday!
Mariah now has a GJ tube in placed..She is getting all nutrients through her J tube!!
As Mariah mommy she is "MY HERO" she is a fighter no matter what is thrown her way!!
No comments:
Post a Comment