Comments on: The Thief In My House http://blog.caljacobson.com/2007/08/15/the-thief-in-my-house/ Dumping my genius to the Net, in dullard-sized increments Thu, 20 Nov 2008 17:13:38 +0000 http://wordpress.org/?v=2.6.2 By: Carrie http://blog.caljacobson.com/2007/08/15/the-thief-in-my-house/#comment-336 Carrie Mon, 01 Sep 2008 03:05:31 +0000 http://blog.caljacobson.com/2007/08/15/the-thief-in-my-house/#comment-336 Thank you for your blog. My son was diagnosed a little over 6 months ago with MAE. We have been on the ketogenic diet now since May but have not really found much relief. We are now on depakote and carbamazapene. As usual at the start of medicine changes we find the seizures to be under control and then within 2-3 weeks we are back up. Our son does not have any language and is 3 1/2. He wants to walk around and play but with the drops it is very hard. I too feel like there is not much out there to help. It is very scary not knowing. On the other hand I just keep hoping this will end. My thoughts are with all of you that have been affected by epilepsy. Thank you for your blog. My son was diagnosed a little over 6 months ago with MAE. We have been on the ketogenic diet now since May but have not really found much relief. We are now on depakote and carbamazapene. As usual at the start of medicine changes we find the seizures to be under control and then within 2-3 weeks we are back up. Our son does not have any language and is 3 1/2. He wants to walk around and play but with the drops it is very hard. I too feel like there is not much out there to help. It is very scary not knowing. On the other hand I just keep hoping this will end. My thoughts are with all of you that have been affected by epilepsy.

]]> By: Cal http://blog.caljacobson.com/2007/08/15/the-thief-in-my-house/#comment-310 Cal Wed, 09 Jul 2008 06:01:56 +0000 http://blog.caljacobson.com/2007/08/15/the-thief-in-my-house/#comment-310 I've posted an update: http://blog.caljacobson.com/2008/07/08/keeping-the-thief-out-of-my-house/ I’ve posted an update: http://blog.caljacobson.com/2008/07/08/keeping-the-thief-out-of-my-house/

]]> By: Cal http://blog.caljacobson.com/2007/08/15/the-thief-in-my-house/#comment-307 Cal Wed, 09 Jul 2008 04:34:43 +0000 http://blog.caljacobson.com/2007/08/15/the-thief-in-my-house/#comment-307 Scott, I certainly understand the problems with Topamax -- unfortunately it (along with Kepra) appears to be the only thing that is granting us control. He is not a candidate for the Ketogenic diet, otherwise we would have definitely jumped on that. We had tried Depakote in mid-2007 and not only did it fail to affect his seizures but had some horrible behavioral side-effects. I'm happy to hear that your son is doing better, and kudos to you for leaving no stone unturned! Scott, I certainly understand the problems with Topamax — unfortunately it (along with Kepra) appears to be the only thing that is granting us control. He is not a candidate for the Ketogenic diet, otherwise we would have definitely jumped on that. We had tried Depakote in mid-2007 and not only did it fail to affect his seizures but had some horrible behavioral side-effects. I’m happy to hear that your son is doing better, and kudos to you for leaving no stone unturned!

]]> By: Cal http://blog.caljacobson.com/2007/08/15/the-thief-in-my-house/#comment-306 Cal Wed, 09 Jul 2008 04:29:37 +0000 http://blog.caljacobson.com/2007/08/15/the-thief-in-my-house/#comment-306 Chris, if you have any Epilepsy support groups in your area I would strongly recommend attending a few meetings. We were lucky enough to find a local group geared for kids and parents of kids with Epilepsy, and it sure helped us last year. Chris, if you have any Epilepsy support groups in your area I would strongly recommend attending a few meetings. We were lucky enough to find a local group geared for kids and parents of kids with Epilepsy, and it sure helped us last year.

]]> By: Scott C http://blog.caljacobson.com/2007/08/15/the-thief-in-my-house/#comment-305 Scott C Tue, 08 Jul 2008 12:59:20 +0000 http://blog.caljacobson.com/2007/08/15/the-thief-in-my-house/#comment-305 We, too, have a son with Doose and speaking from experience I can say only one thing: GET HIM OFF TOPAMAX IF AT ALL POSSIBLE!! This drug alone steals your boy away from you. I was so happy when our son got off the drug and began taking Depakote instead. He went through his Kindergarten year on Topamax and immediately fell way behind his classmates, and needed special assistance. It made him into a completely different person, and it broke my heart. I didn't know if it was the epilepsy or the drug, but found out quickly it was the drug causing the problems after weaning him off. We were referred to a doctor in St Louis that took him off Topamax and prescribed the Depakote. Thank God! He is now working at grade level after catching up for the past 2 years and is his old, energetic, feisty self again. The GOOD news (if you can call it that), is the Doose usually responds well to the Ketogenic diet, Modified Atkins Diet and the Low Glycemic Index Diet. We live in Illinois, but took our son to see Dr Kossoff at Johns Hopkins in Baltimore to officially begin the Modified Atkins Diet in late June '08. After only a couple of weeks we've seen a large reduction in jerks (from about 8-9 day to 2-3), and have even had 3 jerk-free days (and hope for many more). We, too, have a son with Doose and speaking from experience I can say only one thing: GET HIM OFF TOPAMAX IF AT ALL POSSIBLE!! This drug alone steals your boy away from you. I was so happy when our son got off the drug and began taking Depakote instead. He went through his Kindergarten year on Topamax and immediately fell way behind his classmates, and needed special assistance. It made him into a completely different person, and it broke my heart. I didn’t know if it was the epilepsy or the drug, but found out quickly it was the drug causing the problems after weaning him off. We were referred to a doctor in St Louis that took him off Topamax and prescribed the Depakote. Thank God! He is now working at grade level after catching up for the past 2 years and is his old, energetic, feisty self again. The GOOD news (if you can call it that), is the Doose usually responds well to the Ketogenic diet, Modified Atkins Diet and the Low Glycemic Index Diet. We live in Illinois, but took our son to see Dr Kossoff at Johns Hopkins in Baltimore to officially begin the Modified Atkins Diet in late June ‘08. After only a couple of weeks we’ve seen a large reduction in jerks (from about 8-9 day to 2-3), and have even had 3 jerk-free days (and hope for many more).

]]> By: Chris http://blog.caljacobson.com/2007/08/15/the-thief-in-my-house/#comment-304 Chris Tue, 24 Jun 2008 22:13:04 +0000 http://blog.caljacobson.com/2007/08/15/the-thief-in-my-house/#comment-304 I am crying my eyes out right now! All I can say is thank you for writing this. My 2 year old was just diagnosed with Doose though our journey into Keto World began 3 months ago and into Epilepsy at 9 months old. Your blog has hit the nail on the head on sooo many levels. And I am suddenly feeling less alone. Thank you, thank you, thank you for sharing. I am so sorry that you are all going through this and will hope and pray that Gavin finds peace. Hang in there! I am crying my eyes out right now! All I can say is thank you for writing this. My 2 year old was just diagnosed with Doose though our journey into Keto World began 3 months ago and into Epilepsy at 9 months old. Your blog has hit the nail on the head on sooo many levels. And I am suddenly feeling less alone. Thank you, thank you, thank you for sharing. I am so sorry that you are all going through this and will hope and pray that Gavin finds peace. Hang in there!

]]> By: » I’m Not Your Fucking Press Agent, Pal. http://blog.caljacobson.com/2007/08/15/the-thief-in-my-house/#comment-300 » I’m Not Your Fucking Press Agent, Pal. Tue, 08 Apr 2008 00:18:30 +0000 http://blog.caljacobson.com/2007/08/15/the-thief-in-my-house/#comment-300 [...] today, when I was notified that I had a new comment for an Epilepsy-related post I made last year. It was rather long, certainly wasn’t trying to sell me cheap medication, but was instead [...] [...] today, when I was notified that I had a new comment for an Epilepsy-related post I made last year. It was rather long, certainly wasn’t trying to sell me cheap medication, but was instead [...]

]]> By: Michelle http://blog.caljacobson.com/2007/08/15/the-thief-in-my-house/#comment-291 Michelle Sat, 29 Dec 2007 23:05:04 +0000 http://blog.caljacobson.com/2007/08/15/the-thief-in-my-house/#comment-291 I am so sorry. We have had the same thief in our house for the past 13 years, my daughter is now 14. Please don't discount the keto diet too much. After six drugs which literally did not put a dent in her seizures, the diet was the only thing (at that point) that helped at all. She immediately went a year and three quarters seizure free. We lost seizure control due to some other issues, regained it and went another year and a half seizure free. She was on the diet for 6. 5 years altogether and was 4 years old when we started it. We now have good control with Keppra (thank the Lord!). No, the diet doesn't always work but it's stats are better than the drugs. And when it does work, it is truly like a miracle. Unfortunately it gets a bad, undeserved rap from the doctors many times. I am sure the topomomax is messing with your son's appetite. And I have no doubt the topomax is messing with his head too. It does not have a good profile for side effects. Or for seizure control. Anyway, please feel free to send me an email, if you like. I would be happy to point you in the right direction for more info on the diet or give you any advice, answer any questions you might have. We have been dealing with this monster in our house for a long time and nothing makes me happier than to help someone else banish it from theirs. I am so sorry.
We have had the same thief in our house for the past 13 years, my daughter is now 14. Please don’t discount the keto diet too much. After six drugs which literally did not put a dent in her seizures, the diet was the only thing (at that point) that helped at all. She immediately went a year and three quarters seizure free. We lost seizure control due to some other issues, regained it and went another year and a half seizure free. She was on the diet for 6. 5 years altogether and was 4 years old when we started it. We now have good control with Keppra (thank the Lord!).

No, the diet doesn’t always work but it’s stats are better than the drugs. And when it does work, it is truly like a miracle. Unfortunately it gets a bad, undeserved rap from the doctors many times.

I am sure the topomomax is messing with your son’s appetite. And I have no doubt the topomax is messing with his head too. It does not have a good profile for side effects. Or for seizure control. Anyway, please feel free to send me an email, if you like. I would be happy to point you in the right direction for more info on the diet or give you any advice, answer any questions you might have. We have been dealing with this monster in our house for a long time and nothing makes me happier than to help someone else banish it from theirs.

]]> By: Shirrell http://blog.caljacobson.com/2007/08/15/the-thief-in-my-house/#comment-289 Shirrell Sat, 22 Dec 2007 18:59:01 +0000 http://blog.caljacobson.com/2007/08/15/the-thief-in-my-house/#comment-289 I am sorry to hear about your son. My neice was just Dx with this syndrome about eight months ago, because she has a rare form it did take alot longer to Dx her. With her meds and diet she is still getting more weak and not responding to any treatments. She is now residing at Childrens. Our hearts have sank every time we visit and find that they have no answers. If there is any new information out there we would love to know about it. Our hearts go out to all the family's that have had a love one stole to this Dx. I am sorry to hear about your son.
My neice was just Dx with this syndrome about eight months ago, because she has a rare form it did take alot longer to Dx her. With her meds and diet she is still getting more weak and not responding to any treatments. She is now residing at Childrens. Our hearts have sank every time we visit and find that they have no answers. If there is any new information out there we would love to know about it. Our hearts go out to all the family’s that have had a love one stole to this Dx.

]]> By: Cal http://blog.caljacobson.com/2007/08/15/the-thief-in-my-house/#comment-267 Cal Mon, 29 Oct 2007 02:46:38 +0000 http://blog.caljacobson.com/2007/08/15/the-thief-in-my-house/#comment-267 Thank you. We've considered the Ketogenic diet, but unfortunately due to some of my son's allergies he isn't a good candidate. We did try a low-sugar/carb, high-meat and veggies diet for a while and had pretty good results but is quite difficult to get a 4-year-old to keep eating that sort of thing, especially when medicine like Topamax already kills his appetite. Thank you. We’ve considered the Ketogenic diet, but unfortunately due to some of my son’s allergies he isn’t a good candidate. We did try a low-sugar/carb, high-meat and veggies diet for a while and had pretty good results but is quite difficult to get a 4-year-old to keep eating that sort of thing, especially when medicine like Topamax already kills his appetite.

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