Discussions By Condition: Brain conditions

Treatment

Posted In: Brain conditions 3 Replies
  • Posted By: Anonymous
  • March 29, 2006
  • 02:29 PM

Our son, now 9 year old, got the diagnosis Alpers at 1,5 year. He was very ill with many seizures. When we got the diagnos the doctor recommended Q10 and "asparagin"?. He said that this is not a medicin but we had seen some effects with it. We started with Q10 but didn´t see any result. But when we started with aspargin we saw results soon. He did not get more and more seizures but was getting more "healthy". Now he has about 3-8 hard seizures a day but is very glad? happy? inbetween.

Reply Flag this Discussion

3 Replies:

  • We were told Dec of 2004 that my granddaughter has Alpers and that she may only have 6 to 18 months to live. We are at 14 months now and she is back in the hosp. She was put into a coma to stop the seizures because the medications are not stoping this around of them. The same thing was done March of last year, She has been seizure free for 1 year, but the seizures did alot of damage. Before this round she still would smile alot and move her head and her left hand a little. She responed to names and faces very well. We dont know what the out come will be this time or if she will even come home, doctors are taking about signing a DNR. We are not sure what to do right now.
    Anonymous 42789 Replies Flag this Response
  • Our son was put into coma to when he was about 2 months old. But when they wake him up the seizures come at once. Then they decided to cut away a little piece of his brain. The seizures started in his right front of the brain and they took away a little piece, started to wake him and looked if the seizures was coming and then , i dont know the word, but they put him into sleep again, and then took a little piece again until they had taken away all the "bad" piece.
    Anonymous 42789 Replies Flag this Response
  • I have a daughter named Taylor that is now 8 years old. She was diagnosed with Alpers at the age of 8 months. Her first seizure that was noticed was at 7 weeks, and we spent endles hours in hospitals trying to find out the problem, her heath declined very rapidly. We were told she might not even make it a year and here we are looking forward to her 9th birthday in january. I was also told to put DNR on her charts as well I didn't like the thought of it at all but I prayed on it and decided that it would be best for us, but her condition was so bad she had very low odds of ever getting off of the machine. I could not let her live like that, she had been through enough already and as you see she in still with us today letting us know that no matter what you can survive. I tried to find other parents out there years ago for answers or maybe just someone to talk to that could understand my greif but none could be found. I feel very fortunate to have found these comments from the three of you and all I can say is stay strong be strong and proud of those babies and love them with every part of your being and they will feel and know it and you will get it back two-fold. take care of your selves and and those precious angles. Lori
    Anonymous 42789 Replies
    • September 1, 2006
    • 02:55 AM
    • 0
    Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.