Guest guest Posted February 12, 2001 Report Share Posted February 12, 2001 Thanks karen, I'm trying not to thing about it, I'm afraid to get excited incase of a let down. maria Re: Update > , > > Great news! Things seem to be moving right along!! > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2002 Report Share Posted March 19, 2002 Ed... The prayers are still coming! Keep us posted. Annette Update Hi all. They did the catheder(sp?) today and found a small blockage they were unable to get to and break up/unplug or whatever it is they do. was so doped up when the doc talked to her she can't remember what he said. So we'll have to wait until tomorrow to find out more. Keep those prayers coming! Ed Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2002 Report Share Posted March 19, 2002 Ed, I have only gotten a few of the postings and I am only getting bits and pieces about . I am so sorry. You guys are definitely in our prayers as well. Zanna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2002 Report Share Posted March 19, 2002 Still no news yet today. I'm waiting for her to call. At least the friggin nurse could tell me she was stable, but nothing else. Ed > Ed... The prayers are still coming! Keep us posted. Annette > > Update > > > Hi all. They did the catheder(sp?) today and found a small blockage > they were unable to get to and break up/unplug or whatever it is they > do. was so doped up when the doc talked to her she can't > remember what he said. So we'll have to wait until tomorrow to find > out more. Keep those prayers coming! > > Ed > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2002 Report Share Posted March 19, 2002 Just talked to and told her everyone was thinking of her. They couldn't do anything with the clot. It's in a small vein or something in the back of the heart. They couldn't get to it. So they put her on a thinner hoping to blow it out. She should be coming home tomorrow! Ed > > Ed... The prayers are still coming! Keep us posted. Annette > > > > Update > > > > > > Hi all. They did the catheder(sp?) today and found a small > blockage > > they were unable to get to and break up/unplug or whatever it is > they > > do. was so doped up when the doc talked to her she can't > > remember what he said. So we'll have to wait until tomorrow to > find > > out more. Keep those prayers coming! > > > > Ed > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2002 Report Share Posted March 19, 2002 Hi gang. Just got back from visiting . A good friend that lives close by gave us a ride. She's doing pretty good. Wants to come home to the PAC. They haven't said anything about a stress test tomorrow but I wouldn't be surprised. They did say she could come home tomorrow though! Hope you're all doing well and you understand if I don't go through all the posts today. I'll catch up later. Time for food and rest. My rear is so sore and I had a major muscle spasm in my left leg today that went all the way to the groin. Needless to say we took the wheelchair today. I had to pawn off on a different neighbor. Poor dear is so out of touch with reality all she did today was moan about needing more clothes but I was in no shape to take her. Catch you all later. Ed > > > Ed... The prayers are still coming! Keep us posted. Annette > > > > > > Update > > > > > > > > > Hi all. They did the catheder(sp?) today and found a small > > blockage > > > they were unable to get to and break up/unplug or whatever it is > > they > > > do. was so doped up when the doc talked to her she can't > > > remember what he said. So we'll have to wait until tomorrow to > > find > > > out more. Keep those prayers coming! > > > > > > Ed > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2002 Report Share Posted March 19, 2002 Ed Glad to hear the good news about coming home. Give her a big hug from me. Sounds like you are making it OK and have learned to ask for help (not an easy thing) and take it as easy as you can. Those cramps are killers......seems like mine were worse when I was on larger dose of pred. Screaming helps. You guys are still priority on my prayer list. Teddi mailto:teddifromok@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2002 Report Share Posted November 15, 2002 Ann, I am sorry is going through this. We are still on the diet, adding meds and waiting for him to stop the seizure explosion as well. He just lies around all day sleeping and seizing. We have to wait another week. Dillon isn't hungry either but at age 6 I can still sit him on my lap and spoon feed him. He has lost 3 lbs this week. One of the reasons I am forcing some food down him is that I think the medicine levels can go up if your child is not eating. I know I read that some where. When I saw the " cocktail " is getting and the fact he isn't eating, you wonder if he is getting toxic on all those meds. I am sorry if I have added to the mess another piece of the puzzle that may or may not fit. I'd like to know for sure myself. Hang in there. Ariane (Dillon,6, seizures not controlled at this time, on theKD, Phenobarb and Depakote) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2002 Report Share Posted November 15, 2002 At least if the meds dont work... you still have an option. ..Surgery. Doesnt sound good (Its not something you want to jump for joy about, but then again maybe it is?) It saves some childrens lives. Remember, the diet is all some of us have, some of us have no other option. Wish you luck. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2002 Report Share Posted November 15, 2002 , you have a good memory. The Depakote did seem to hold him better. We were better pre-diet for sure but now that he is off the Depakote, we don't want to add it back for a couple of reasons. He is more alert, definitely. We know there wasn't adequate sz control on the diet (he was still having a lot of szs) and no matter how much Depakote we added, it still didn't stop them much. And also, we've decided to go forward with surgery and the doctor would prefer him not on the Depakote during that time. The Keppra doesn't seem to help at all. It feels like a stupid new thing we are throwing into him...which hasn't stopped the szs much. Very confusing.. Take care, Ann > Ann, > This sounds awful! We tried Keppra once and it was a disaster. 's > behavior was horrible and seizures increased like crazy. Our neuro told us > that more than 1/2 his patients got worse on Keppra. Of course he said the > ones that it works for, it works great. > > I don't know if you saw my post on Felbatol. We're getting ready to start. > 's loss of appetite is from Felbatol. Apparently it can be pretty > bad. We were told that if experienced bad insomnia or anoxeria (his > phrase), we would have to take longer between dosage increases to allow his > body to adjust. So don't increase the Felbatol dosage until has > stabilized or you'll just be in for worse. > > Just out of curiousity... I remember that was hospitalized to wean > Depakote. Why? Did you do it for the diet? I'm just wondering because I know > he was better than he is now pre-diet (and pre-Depakote wean). > > hope things are improving. > ashley > > ---------- > From: " arwr12 " <arwr@v...> > To: ketogenic@y... > Subject: Update > Date: Fri, Nov 1115, 1220022002, 110:04 AM > > > <<These days, is taking in about 300 calories a day.. if that. > He's been doing this for 6 days. His face looks gaunt, he's as white > as a sheet and he's getting very afraid of the seizures. I won't let > him walk down the stairs by himself now. It's so wierd. He really is > starting to seem like a sick child. My happy-go-lucky, wonderful son!>> > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2003 Report Share Posted July 27, 2003 Hi Ladies - I have not been on the board very much recently, but I wanted to give you a quick update. Like Angie, I am having long, weird, cycles with no O post SU resection. This last cycle, I was supposed to take Progestin to bring on AF after 30 days. I took the Progestin for 5 days starting on CD 35, and after finishing, nothing happened for 2 weeks. I called the RE, and he wanted me to take a month of the pill, and then come in to see him. Of course, once I called the RE, AF arrived the next night, so my cycle was around 56 days with no O. I called back, and they still want me to take the pill for 1 month, then come in and see him. I am hoping (and assuming) that I will start Clomid in a month. By then, it will have been 6 months since resection and no normal cycle, no O. I assume that he's having me take the pill to try to regulate my cycle and hormones. I am also going on vacation for 2 weeks to Japan (leaving Wed) so I am going to try to put this stuff out of my mind, at least for a short while. I hit a really rough spot emotionally at the beginning of July, but have been doing better since then. Just caught up on some posts - congrats Ann! I hope that I come back in 2 weeks to some more good news on the board. H (adding my initial since there are a few s here now) 32, 1 m/c, SU resected 2/03 Hopefully joining the Clomid ranks in August Quote Link to comment Share on other sites More sharing options...
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