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Thursday, February 25, 2010 |
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Wish I had better news to report :( Tonight is our second night of seizures with our little guy. We have been weaning Brady off of pheno, that he came home from the hospital on. We knew that this med was not going to be a longterm med for Brady, since his body does not tolerate it well at all. We had hoped to wean him off and have him remain on only one med, but its becoming obvious that this is not a possibility. Last nights seizure started while he was in the bed with his dad, it didnt last long, or we think it didnt anyway (dad was sleeping and woke up to the seizure). Last night the seizure stopped on its own. Tonight I woke up to find Brady seizing, again,cant be sure how long he had been seizing. I used his magnet, used diastat and used the magnet again, but it took about ten minutes for the seizure to stop. It was what we call a "bad boy", a tonic clonic. Brady is very out of it now, not very responsive at all. Please pray that we can find something to work for him, and that he can get past this setback, very soon.
Will post more later. |
posted by angelwings
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3:38 AM
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I can so empathize with what you are going through. There is nothing worse than having to watch a precious child suffer...
Lindsey Petersen
http://5kidswdisabilities.wordpress.com
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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 |
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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Angelman
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The AS Forum was created in April
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people with Angelman Syndrome (AS) to exchange information with each
other.
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Cure Angelman Syndrome |
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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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I can so empathize with what you are going through. There is nothing worse than having to watch a precious child suffer...
Lindsey Petersen
http://5kidswdisabilities.wordpress.com