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Thursday, July 14, 2011
Were back!
Hey guys, sorry for being absent for so long, but we are back now!! Alot has taken place over the past few years... I just graduated last Sunday, so will have more time for updates now. Brady is doing well, despite a recent setback.
He has been acting strangely for more than a week....eye rolling, droopy eyes, being tired, and then obvious seizure activity started. Sunday we were winding up a week long camping trip. He woke me up chewing on a block, drooling, unresponsive, wild eyed, and totally out of it. We knew that it was a seizure so we used his VNS magnet and got him out of the seizure after about 30 minutes. He and I headed home ahead of everyone else, but he started to gag and vomit on the way home.
Once we got here, he seemed to calm down so I put him down for a nap so that he could get some rest. We made an appointment with the neuro for Tuesday, but Monday things progressively got worse. He slept until nearly 1pm that day. When I went in to check on him, he was very dull acting, just didnt seem like himself at all. I had a sinking feeling that something bad was going to happen, so called my hubby at work and told him to come home right away.
We called the ped and explained that we didnt know what was wrong, if it was neurological or if he was just getting sick, but that he needed to be seen right away. Minutes later we headed out to the peds office and while on the way, we saw an obvious seizure. He began to roll his eyes to the left and then his head followed. He limbs became stiff and he was unresponsive. The seizure lasted around a minute and he had stopped when we got to the doc. We signed in and were taken straight back to our doctors personal office, where Brady began to have drop seizures and then more of the seizures that we seen in the car.
He was seizing about every minute to two minutes at this point. The nurse and doc got on the phone with our neuros office and arranged for us to head straight to Pensacola hospital. We drove for an hour and a half with Brady seizing the whole way. Once we got there they took him straight back and started giving him medications to stop the seizures. Around 6pm the meds kicked in and he began to calm down. We stayed in the picu Monday night and all day Tuesday and then were transferred to a regular room that night. We never found out exactly what caused the seizures to breakthrough after more than a year of being seizure free, but did find out that he is not in nonconvulsive status like before. It was a pleasent surprise to have the medications work so effectively and to not have to put him back into a coma and on a vent.
At any rate, we got home on Wed afternoon and things have been calm thus far. We would like to thank to many people that sent up prayers and thoughts for our family during this time. God truly worked a miracle and for that we are so thankful!!!
Its time to hit the hay for now. But I promise to update much sooner than before. Have a blessed night!!

posted by angelwings @ 2:07 AM
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What is Angelman Syndrome?

                 

About Brady

Read Brady's Story Here   

I am 11yrs old and I have Angelman Syndrome. I may have this syndrome, but I dont let it hold me back. I love life and live it to the fullest every single day. My mom says that our research organization, Foundation for Angelman Syndrome Therapeutics, is working really hard on a treatment or even a cure for me and my friends. I am thankful to have 25 words but I look forward to the day that I can carry on long conversations and talk so much that everybody has to ask me to please be quiet for a few minutes :) Anyway, mom says Im awesome and super funny and I have to agree,lol.

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This downloadable Interactive Seizure Diary helps you track your seizure activity and medication routine. You can also record doctor appointments and notes about how you are feeling. Before a doctor appointment, print the information and share it with your physician.

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The AS Forum was created in April 2005 and provides an easy way for family members and carers of people with Angelman Syndrome (AS) to exchange information with each other.

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The Foundation for Angelman Syndrome Therapeutics (or FAST) is an organization of families and professionals dedicated to finding a cure for Angelman Syndrome and related disorders through the funding of an aggressive research agenda, education, and advocacy.

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