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Saturday, March 27, 2010 |
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Not sure how long it has been since our last post, but wanted to update everyone on what has been happening here. A couple weeks ago, on a Sunday, Brady started having multiple seizures. He had 8 pretty bad seizures on that day. I noticed some bumps in his throat, so called the doc at home. He said since Brady was having so many seizures, to take him to the ER and he would tell the doc there what he wanted done. He also said he would tell the doc to admit Brady. So we went to the ER, but as usual, the ER doc did not follow our docs orders. He done one test, if you could call it that, and said Brady did not have Strep. When I asked what the white bumps in Brady's throat were, the doc said "oh I didnt see those". So we held Brady down and showed the doc what we were seeing. The doc said well it isnt an absess, so he will be fine and he sent us home.
The following day, Brady continued to have seizures. We took him in to see his ped, and they correctly retested for strep, it of course came back positive. While we were in the office, Brady had three seizures. So we went back to the hospital and had more bloodwork, where Brady continued to have seizures. Our ped and neuro put Brady on Diazepam for 3 days, hoping it would stop the seizure activity. Since he was taking Diazepam, we were not allowed to give Diastat as a rescue med, so had no way to stop the seizures at home. While we were trying to eat dinner, Brady had three bad seizures at the table. So I called our ped back and he said that we shouldnt be home with Brady and sent us to the hospital. Brady was on IV antibiotics for 5 days and the physical seizures seemed to subside. They done an EEG Friday morning and said that Brady was having a seizure every 10 seconds, but we were unable to see them. Our neuro was not in, so we decided to come home and wait til Monday to see the neuro and get another EEG.
Monday we went for the EEG at 10am and the tech seemed really nervous, even went up to the third floor to get the doc to look at the EEG while it was in progress. So instead of waiting til our scheduled appt at 3pm, which was with the practitioner, our doc told us to come straight to his office after the EEG. The doc told us that the EEG was not good, but was not as bad as the one that put Brady in the hospital in December. We discussed our options and decided that we wanted to avoid the hospital if possible, so changed to a new med. We have been giving the new med at home and have seen a few seizures this week, but nothing major. We are waiting for the med to get in his system and see what happens.
We go back in two weeks for another EEG and to see the doc. Hopefully the EEG will be better by then, but if it isnt, we will discuss what the next step will be. I will keep you guys posted on what happens.
In the midst of all of this, I had finals the week Brady was in the hospital. The internet was not good, so I had to make frequent trips down to the waiting room, to work on my finals. In the end, I did come out with A's, so I was pleased.
On a good note, we went to our friends wedding today, Brady had a blast! he totally loves being in the room with a bunch of people, he is such a little monkey. He done really well, other than dumping our plate in the middle of the floor :( He and his brother looked so handsome today, I am going to post pics once I am done here.
Anyways, its getting late, and I am drained. Will try to post an update soon. God bless! |
posted by angelwings
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11:45 PM
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I am so proud of you for keeping it together and passing your finals with flying colors. That says a lot about your character.
I'm glad Brady seems to be doing better. I love the pictures with his brother - they both look so handsome!
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| 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.
See my complete profile
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Interactive Seizure Diary |
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I am so proud of you for keeping it together and passing your finals with flying colors. That says a lot about your character.
I'm glad Brady seems to be doing better. I love the pictures with his brother - they both look so handsome!