Guest guest Report post Posted August 30, 2002 , I remember when Marc first went off to college to Lincoln, NE a whole 6-7 hrs away. I wanted to go too but it was just the wrong time farmwise and Marc did just fine all by himself there. He packed his 88 Camaro to the gills and went along. He'd come home, though, every single vacation or long weekend and not leave til the last minute until....one Thanksgiving he ran into total ice on I-80 1/2 way there, skated around (no vehicles on interstate) and ended up backwards. Truck drivers came along and righted him, state patrol came along and advised him to go US Hwy 30 the rest of the way which he did. But...he forgot HWY 30 didn't go right into Lincoln but curved up toward Omaha so he had to turn around and go back. That was the last time he waited until late p.m. to leave!!! In fact once he left on a Sat night because they were predicting bad blizzard---he escaped it. And now he's home again and still no wife. Does that NY Thruway still sound so bad on your tires---it used to be made of concrete and those seams would just sound awful from Mass line through Ohio line! Best wishes to and to Mom! Lelia Quote Share this post Link to post Share on other sites
Guest guest Report post Posted March 19, 2004 Hi. I am so sorry that is sick! I hope he feels better soon! I wrote you a message yesterday that we were holding off on the reduction. Langan had a seizure both Tuesday and Wednesday- first time since she first went on phenobarb that she has had then on consecutive days soooo we're going to sit still for a bit. We are also having trouble recently getting Langan to drink. Her BMs the last few days have been green water so we were going to go to the ped tomorrow but we solved the mystery, I think, last night. She started screaming like she did back when we wound up in the ER so a lightbulb went off in my head. We gave her a suppository with no results so I gave her an enema at midnight. After about 20 minutes she passed the nastiest " chunk " I have ever seen- little rocks all mixed in. Soooo I think she was constipated and that the last few days the green water was all that was getting through the " blockage " . She was sooooo happy after- just cooing and lying flat out like she was completely comfortable. We're going to split her Cal-Mag into morning and night and see how that goes and then maybe add some mag. And I have a message in to our dietician about digestive enzymes. So we'll see. Maybe I am a dreamer, but I'm hoping this was behind the seizures, too. We'll see. If she has one today, it won't surprise me. But after that then if they don't spread out again I'll have to look elsewhere. Never a dull moment.... I hope feels better soon. Let me know how the wean goes. I am so anxious to get rid of this stuff- and our neuro also doesn't think the lamictal is causing much of the problems other than te ketone fluctuations which can lead to seizures- but my gut told me to hold off a few days on hers. We shall see!! Talk to you soon! > >Reply-To: ketogenic >To: ketogenic >Subject: /Langan >Date: Fri, 19 Mar 2004 06:22:57 -0800 (PST) > _________________________________________________________________ Get reliable access on MSN 9 Dial-up. 3 months for the price of 1! (Limited-time offer) http://click.atdmt.com/AVE/go/onm00200361ave/direct/01/ Quote Share this post Link to post Share on other sites
Guest guest Report post Posted March 19, 2004 Hi. I am so sorry that is sick! I hope he feels better soon! I wrote you a message yesterday that we were holding off on the reduction. Langan had a seizure both Tuesday and Wednesday- first time since she first went on phenobarb that she has had then on consecutive days soooo we're going to sit still for a bit. We are also having trouble recently getting Langan to drink. Her BMs the last few days have been green water so we were going to go to the ped tomorrow but we solved the mystery, I think, last night. She started screaming like she did back when we wound up in the ER so a lightbulb went off in my head. We gave her a suppository with no results so I gave her an enema at midnight. After about 20 minutes she passed the nastiest " chunk " I have ever seen- little rocks all mixed in. Soooo I think she was constipated and that the last few days the green water was all that was getting through the " blockage " . She was sooooo happy after- just cooing and lying flat out like she was completely comfortable. We're going to split her Cal-Mag into morning and night and see how that goes and then maybe add some mag. And I have a message in to our dietician about digestive enzymes. So we'll see. Maybe I am a dreamer, but I'm hoping this was behind the seizures, too. We'll see. If she has one today, it won't surprise me. But after that then if they don't spread out again I'll have to look elsewhere. Never a dull moment.... I hope feels better soon. Let me know how the wean goes. I am so anxious to get rid of this stuff- and our neuro also doesn't think the lamictal is causing much of the problems other than te ketone fluctuations which can lead to seizures- but my gut told me to hold off a few days on hers. We shall see!! Talk to you soon! > >Reply-To: ketogenic >To: ketogenic >Subject: /Langan >Date: Fri, 19 Mar 2004 06:22:57 -0800 (PST) > _________________________________________________________________ Get reliable access on MSN 9 Dial-up. 3 months for the price of 1! (Limited-time offer) http://click.atdmt.com/AVE/go/onm00200361ave/direct/01/ Quote Share this post Link to post Share on other sites
Guest guest Report post Posted March 25, 2004 Those doctors are sure something, aren't they???? I wish there was a " tact " class in med school but I can see that there isn't. Oh, well, what can you do. Langan is doing well. Of course, I am sure I am jinxing her as we speak.... She was waking up 30 minutes after sleep with her naps and at night on Monday, doing those nasty shiver things. She did one on Tuesday during her nap- a big one- and we thought it was going into a full blown seizure but then it stopped. And we've seen NOTHING since- no shivers, nothing. So who knows. I am nervous b/c she smelled so much like ketosis over the weekend when she was sz-free and then after we dropped the lamictal she quit smelling so I thought her ketones were too low but now I am just confused. We'll see how things go and then decide whether to bite the bullet and drop to 5 mg on Sunday. I am so jealous that you will be LAMICTAL FREE by then!! That is so great!! I really don't know how long we'll be off the meds- I want to give her some time without them and give the diet a chance without them and, to be honest, I would sacrifice the occasional seizure to stay med free- especially since she hasn't had control of them anyway with meds, but if things get out of hand then I don't know what we'll do. I guess we'll just take it one day at a time for now and hope that doesn't happen. On the plus side, her therapists and even our friends are noticing how much she is changing these days. She is starting to do so many " typical baby " things that she's never done before- snatching things from our hands; bouncing while she's sitting and just laughing about it. Sure, they're typical for younger babies but these are things I really wondered if I would ever see so to us they are miracles!! How is this afternoon? Sounds like he is doing really well with such a TINY bit of lamictal in him. YAY!!!!!! I saw your posts about the dairy stuff. I'll be interested to see how that goes. I have thought about it but with all of the other changes we've been having I wanted to wait on that one. I do think there's something to it, though. Or at least people here have had great success dairy free. I hope is one of them!! Keep me posted. I am on the countdown for you- only 2 1/2 more days of lamictal for !! Woo Hoo!!! Hugs to the little guy! > >Reply-To: ketogenic >To: ketogenic >Subject: /Langan >Date: Wed, 24 Mar 2004 09:07:23 -0800 (PST) > _________________________________________________________________ FREE pop-up blocking with the new MSN Toolbar – get it now! http://toolbar.msn.com/go/onm00200415ave/direct/01/ Quote Share this post Link to post Share on other sites
Guest guest Report post Posted March 31, 2004 Tucker wrote: > I ordered that Carn-A-Ware that people in the group were talking about > a while back. I figured it couldn't hurt and maybe it'll help. I'll > have to pass it by the neuro. I would just give it to her and see > what happens, but my husband the doctor's son isn't as daring as I > am. I'm sure the neuro will be fine with it. Some info should come with your order, stuff about the studies done on CarnAware. Take it along to the neuro, they love double blind studies you know Convinced our very skeptic neuro to ask for funding for four month trial and with repeated psych testing convinced him that it actually worked and to ask for permanent funding , 's mom Quote Share this post Link to post Share on other sites
Guest guest Report post Posted March 31, 2004 Donna Farella wrote: > what is Carn-A-Ware? Its the brand name for a formulation of carnosine (not to be confused with carnitine). It is an animo acid which a ped neuro in Chicago area (I think) has had some very good success with for seizures and autistic issues Quote Share this post Link to post Share on other sites