tag:blogger.com,1999:blog-5895440453335552117.post3918999198541852759..comments2024-03-28T15:12:21.172-04:00Comments on calvin's story: uncharted territoryChristy Shakehttp://www.blogger.com/profile/00106761191160700997noreply@blogger.comBlogger9125tag:blogger.com,1999:blog-5895440453335552117.post-12012823103188399922014-01-07T12:59:54.789-05:002014-01-07T12:59:54.789-05:00Thank you for the information. I can imagine the ...Thank you for the information. I can imagine the difficulty of the 4:1. We haven't gotten higher than 3:1 or she gets excessive ketones. Looking forward to weaning her this summer and giving simple cereal for breakfast :)Amynoreply@blogger.comtag:blogger.com,1999:blog-5895440453335552117.post-84778525597484574942014-01-07T10:56:37.652-05:002014-01-07T10:56:37.652-05:00we weaned off of the diet by .5 ratior (i.e. from ...we weaned off of the diet by .5 ratior (i.e. from 4.0:1 to 3.5:1) every few weeks if i recall. we simply changed his meals in the ketocalculator by adding back carbs and protein and scaling back the fats. he was on the 4:1.Christy Shakehttps://www.blogger.com/profile/00106761191160700997noreply@blogger.comtag:blogger.com,1999:blog-5895440453335552117.post-31983149291221998662014-01-06T19:11:13.177-05:002014-01-06T19:11:13.177-05:00Christy - how long did it take to wean off? and t...Christy - how long did it take to wean off? and to get on a more normal diet? what was the process? what ratio was Calvin doing? I hear you on difficulty... bordering on moments of insanity...Amynoreply@blogger.comtag:blogger.com,1999:blog-5895440453335552117.post-44848729009186053122014-01-02T12:29:12.541-05:002014-01-02T12:29:12.541-05:00crossing fingers that this will help. crossing fingers that this will help. Peghttps://www.blogger.com/profile/02162890081910497200noreply@blogger.comtag:blogger.com,1999:blog-5895440453335552117.post-35572793701481882002014-01-02T11:55:43.412-05:002014-01-02T11:55:43.412-05:00thank you amy. i wish the best for you and hailey....thank you amy. i wish the best for you and hailey. we went off of the keto diet after a year or more and it took a long time before he was eating a normal diet. it didn't put a dent in his seizures and was difficult for everyone. good luck!Christy Shakehttps://www.blogger.com/profile/00106761191160700997noreply@blogger.comtag:blogger.com,1999:blog-5895440453335552117.post-51828107549063194582014-01-02T11:49:41.040-05:002014-01-02T11:49:41.040-05:00I hear you on the icy mood - we started our New Ye...I hear you on the icy mood - we started our New Year's day with a ketogenic breakfast, morning seizures, a pull-up full of *#$%, with a necessary shower for her and I that made me lose my appetite, followed by more seizures, more *#$%, a messy carpet, and then trying to get Topomax down in some jello. It took me until noon to thaw that ice... <br /><br />I read about your earlier trepidation of Calvin's impending puberty. We have gone through that, though with a girl, and we believe that no matter what medication she was on, her puberty trumped it. She started her period last July, and has since had 2 depo-provera shots, her second one taken by her body well which has stopped her period, though we're hoping that the progesterone will continue to level her hormones. I don't know about boys and their hormones and how or what could help regulate it - probably marijuana... ;) But no matter what meds she was on, she would go through episodes - usually two weeks straight of full-on, relentless seizures, with hospital stays. In the summer of 2012, we got full custody of Hailey (she is my step-daughter) and we had had enough of the daily meds that caused her to sit for hours like a zombie and drool, with no ability to concentrate, no motivation, and no emotion - high dosages of Keppra, Lamictal, Topomax, Clonopin, and Risperdal (put on years prior for behavior). I read about Risperdal's side effects from adults. Immediately we took her off that. Next was the Clonopin. We started the Keto diet in the fall of '12. We still don't know if it works... Keppra was next. Hailey couldn't take the sugary Keppra liquid so we changed to a pill, but the bitterness was out of this world, and so we had to open vials of injectable Keppra and freeze it into coconut oil. And the injectable Keppra was not covered through insurance. All around pain... Keppra was done that fall. Lamictal was next in early 2013. It was a long wean, and by November she was off completely. We introduced Onfi in March 2013, we found it didn't work even at 30mg daily, and so she was off by the fall. Topomax was reduced before the keto diet start, and we will wean this spring. Her small amount of Topomax and a reintroduction of Clonopin at a higher dose is what she is on now. With a change in doctor due to the keto diet we heard in a low whisper that she has Lennox-Gastaut. So many medications, so pointless. <br /><br />My apologies for the long post, but I wanted to share the meds pain, and my belief that until we can get it down to one med we have no idea what, if anything, is working. I'm convinced as you are that marijuana is the answer. Whatever fight I can help you with, as well as my own fight down here in the most non-liberal state of TX, I'm on board. If these god#$*% politicians had to deal with what you and I do on a daily basis, laws would be passed in a heartbeat.<br /><br />With wishes of a hopeful 2014,<br />Amy Amynoreply@blogger.comtag:blogger.com,1999:blog-5895440453335552117.post-83064960554104764032014-01-02T05:58:05.147-05:002014-01-02T05:58:05.147-05:00Happy New Year, Christy! May 2014 be the year tha...Happy New Year, Christy! May 2014 be the year that Calvin's seizures are brought under better control (fingers double crossed for the "green") and blessings for your peace of mind.<br />DianeAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-5895440453335552117.post-6906764467779314282014-01-01T22:54:00.630-05:002014-01-01T22:54:00.630-05:00Such a heavy load! You will make the right decisi...Such a heavy load! You will make the right decisions. I wish you the warmth to melt your mood and to return the flexibility you need.<br /><br />RR JuliaAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-5895440453335552117.post-45877706003853771092014-01-01T13:51:41.226-05:002014-01-01T13:51:41.226-05:00Bless your heart!Bless your heart!Carolhttp://gmail.comnoreply@blogger.com