Guest guest Posted August 30, 2000 Report Share Posted August 30, 2000 Tracey, Tony ped. at a moments notice if he feels the 4 week course is too long will move it back to the three week course to see if this helps..his veiw is to keep Tony from getting sick period..if it seems like Tony is doing well he'll keep him on the three week course for a while..this really worked for Tony and he is doing really well staying at the four week now..Tony also has neutropenia so any fever at all means an admittance so this could be the reason he is so quick to do this...karen and tony cvid, scn HELP > >Hi everyone, >First let me say that I am sorry for not posting much the past several >months. As many of you know...its been a rat race here. And its only >getting worse it seems. I am also sorry I haven't been reading any email >the past several weeks <delete, delete, delete>>> but I just havent had the >time, so if anyones pumpkins are sick, please know that I have been saying a >prayer for all of ya each night. > >Right now, I need some information from the veterns here. > >For several months now, I have noticed that started to get the runny >nose wheezing and low grade (99) fevers starting in the 3rd week post >infusion (he gets his every 28 days). Well we are due to go in Thrusday for >his IVIg <31 days after the last one>. Well in my rat race here I didn't >realize the weeks going by and has been sick for about 2 weeks now. >It started out runny, then by last Wednesday it would take 1-2 seconds for >him to inhale and 4-5 seconds to exhale, he was snoring really badly at >night. By Friday, he was running green (actually only a drop worth after >about 15 minutes of crying). I tried to suction it out but it was toooooo >thick to get to. I then started to use saline spray to loosen it up and I >think I got it all out and he was running clear again by Friday night. He >ran all weekend but was happy to be playing. Then yesterday, he had a 102.7 >temp (one dose of tylonal took care of that:O) and was totally miserable all >day until about 7 pm. Then today he is running clear still and was happy >until about 6:30pm when he ran a 99 temp. > >He is on Prelone (only for 6 days and we are on Day 6 today), saline spray >when needed and Zyrtec. I also gave him one pill of the childrens Tylonal >Cold medicine this moring. > >Now here is my question. The last time he had levels drawn to see what his >Ig levels were doing at the 28 day mark, he came up being at the low end of >normal. He did this two months in a row. They said that that means that >they are right on track with the every 4 weeks infusions. It seems to me >that for that 4 weeks does not cut it and we should go back to every 3 >weeks to keep him from getting sick. I am really worried because we go >Thrusday and on the 18th of September he is having major surgery and I am >terrified that he will get a severe infection (possible meningitus) if his >levels are too low. > >Do any of you go through this every month? What has been the solution? >What do you do to protect your children from getting the <what I call the 3 >week runs>? Any suggestions would be great. Oh and do any of your kids get >close infusions even though their levels are at the low end of normal past >that date? > >Thanks in advanced. > >I will make it a point to read the emails tomorrow. > > > > > >This forum is open to parents and caregivers of children diagnosed with a Primary Immune Deficiency. Opinions or medical advice stated here are the sole responsibility of the poster and should not be taken as professional advice. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2000 Report Share Posted August 30, 2000 Hi , Hannah has IV every 3 weeks but usually in the fall - winter it goes back down to every 2 weeks. Doc says levels aren't " too bad " but her tolerance for her decreasing levels is very low and she gets sick on her " down week " (3rd week). The doc told me that some kids react different. You can have a child that has barely below normal levels and be sick all the time and then the kid with levels that are crashing low isn't sick as much. Every child is different. When Hannah starts with the croup, wheezing or runny nose in the fall (Oct-Nov) they change her to every 2 weeks. If theydon't, she ends up with pneumonia or sinus infection. Hope this was helpful. (Hannah 9yrs old, CVID, JRA) > Hi everyone, > First let me say that I am sorry for not posting much the past several > months. As many of you know...its been a rat race here. And its only > getting worse it seems. I am also sorry I haven't been reading any email > the past several weeks <delete, delete, delete>>> but I just havent had the > time, so if anyones pumpkins are sick, please know that I have been saying a > prayer for all of ya each night. > > Right now, I need some information from the veterns here. > > For several months now, I have noticed that started to get the runny > nose wheezing and low grade (99) fevers starting in the 3rd week post > infusion (he gets his every 28 days). Well we are due to go in Thrusday for > his IVIg <31 days after the last one>. Well in my rat race here I didn't > realize the weeks going by and has been sick for about 2 weeks now. > It started out runny, then by last Wednesday it would take 1-2 seconds for > him to inhale and 4-5 seconds to exhale, he was snoring really badly at > night. By Friday, he was running green (actually only a drop worth after > about 15 minutes of crying). I tried to suction it out but it was toooooo > thick to get to. I then started to use saline spray to loosen it up and I > think I got it all out and he was running clear again by Friday night. He > ran all weekend but was happy to be playing. Then yesterday, he had a 102.7 > temp (one dose of tylonal took care of that:O) and was totally miserable all > day until about 7 pm. Then today he is running clear still and was happy > until about 6:30pm when he ran a 99 temp. > > He is on Prelone (only for 6 days and we are on Day 6 today), saline spray > when needed and Zyrtec. I also gave him one pill of the childrens Tylonal > Cold medicine this moring. > > Now here is my question. The last time he had levels drawn to see what his > Ig levels were doing at the 28 day mark, he came up being at the low end of > normal. He did this two months in a row. They said that that means that > they are right on track with the every 4 weeks infusions. It seems to me > that for that 4 weeks does not cut it and we should go back to every 3 > weeks to keep him from getting sick. I am really worried because we go > Thrusday and on the 18th of September he is having major surgery and I am > terrified that he will get a severe infection (possible meningitus) if his > levels are too low. > > Do any of you go through this every month? What has been the solution? > What do you do to protect your children from getting the <what I call the 3 > week runs>? Any suggestions would be great. Oh and do any of your kids get > close infusions even though their levels are at the low end of normal past > that date? > > Thanks in advanced. > > I will make it a point to read the emails tomorrow. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2004 Report Share Posted November 19, 2004 Ziggy, go to AA, see a shrink, do whatever it takes, because you've got a drinking problem, don't blame it on the hep. Alley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2004 Report Share Posted November 19, 2004 Amen, Alley!! You know when I was first Dx'd with Hepatitis C, I dug a well of depression. But I started doing things to make my liver better. I took the stuff that the health food store told me would detoxify my liver. Made a appt with a GI to see what could be done to get rid of it. From there I began to dig myself out of that well. I have genotype 1a, and while it is one of the hardest to get rid of. I am sure that sooner or later I will get a SVR that is a good one. Drinking alcohol is a thing of the past with me. Now I must say that I haven't given up coffee it is one of my weak points. And Big Red Soda is my crutch that I comfort myself with. (taste like cherry cotton candy). Hee Hee Love Janet " Shshonee (Alley) " wrote: Ziggy, go to AA, see a shrink, do whatever it takes, because you've got a drinking problem, don't blame it on the hep. Alley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2004 Report Share Posted November 19, 2004 You have a choice...Do you want to live or do you want to die? If you have the spark to fight back, you need to walk away from drinking. My thoughts are with you! Kathy > > im so bored im drinking i know im killing myself but i cant stop im > 1b with hep c,,,,,,, how do you cope.ziggy50@m... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2004 Report Share Posted November 19, 2004 ANY chronic illness has it's baggage of depression, any one of them. Hep C is no different. You can't avoid it any more than you can avoid breathing as long as you are alive. It's a given. I hated to admit it. I've never been depressed in my life. At least I didn't think so until I got the right antidepressants and realized behavior patterns that got worse as my hep and fatigue got worse. I'm not saying I'm Ms Olympia now, but I have learned to see the trends in myself. I have a therapist who works with me when needed. etc etc. I built the support system I needed to best help me as possible. You just gotta take that first step. Alley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2004 Report Share Posted November 19, 2004 Been there done that got so depressed by certain circustances, went to my sisters house and started drinking did that three times, but my question is think how you feel the next 2 or 3 days it's not worth it. I'm 1b also with cirrhosis. but you can make it I'm an alcoholic. those three times I drank made it very easy for me to fall back into the same pattern, my doctor called me one night my personal doctor because some bird had told on me. But after talking to him first of all I was depressed again but he told me what to do next time he said you really want to drink call someone and talk to them tell them what's going on. and believe me thats what I'm going to do, however just staying away from the triggers help as well. seek out a group if you have to like AA anything but don't withdraw and sink into the hole Peace kathypfmp wrote: You have a choice...Do you want to live or do you want to die? If you have the spark to fight back, you need to walk away from drinking. My thoughts are with you! Kathy > > im so bored im drinking i know im killing myself but i cant stop im > 1b with hep c,,,,,,, how do you cope.ziggy50@m... It's a pleasure having you join in our conversations. We hope you have found the support you need with us. If you are using email for your posts, for easy access to our group, just click the link-- http://groups.yahoo.com/group/Hepatitis_C_Central/ Happy Posting Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2008 Report Share Posted April 29, 2008 could someone send me the link to the facebook group, it does not come up as insideout weight loss thanks sally Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2009 Report Share Posted February 4, 2009 , Does your email have any settings where you can block people? I'm so sorry she has targeted you. If you can't block her, I'd just delete her mail and not read it. Good luck - I hope it stops. Kelley Help That horrible woman from yesterday is sending me hate mail. She's clogging up my in box and I've tried to track her down, reported her to Yahoo, but no luck. Any ideas? It's all sassy fabulous: Blog.liedel.org <http://blog. <http://blog.liedel.org/> liedel.org/> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2009 Report Share Posted February 4, 2009 Hi My spam filter allows me to block an individual address- do you have one? You could call your ISP to see if they offer this feature- good luck- and hopefully the crazy will back off. You could also look at her IP address and report her to her IP administrator  Anne Subject: Help To: insideoutweightloss Date: Wednesday, February 4, 2009, 7:59 PM That horrible woman from yesterday is sending me hate mail. She's clogging up my in box and I've tried to track her down, reported her to Yahoo, but no luck. Any ideas? It's all sassy fabulous: Blog.liedel. org <http://blog. liedel.org/> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2009 Report Share Posted February 4, 2009 I told her not to mail me, or I would report her. She told me to. I did. Then she became the first person I've blocked in 20 years of using the internet. That includes the local BBS system when I was much younger. It's all sassy fabulous: <http://blog.liedel.org/> Blog.liedel.org From: insideoutweightloss [mailto:insideoutweightloss ] On Behalf Of Kelley Sent: Wednesday, February 04, 2009 3:03 PM To: insideoutweightloss Subject: RE: Help , Does your email have any settings where you can block people? I'm so sorry she has targeted you. If you can't block her, I'd just delete her mail and not read it. Good luck - I hope it stops. Kelley Help That horrible woman from yesterday is sending me hate mail. She's clogging up my in box and I've tried to track her down, reported her to Yahoo, but no luck. Any ideas? It's all sassy fabulous: Blog.liedel.org <http://blog. <http://blog.liedel.org/> liedel.org/> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2009 Report Share Posted February 4, 2009 20 yrs of using the internet? Subject: RE: Help To: insideoutweightloss Date: Wednesday, February 4, 2009, 3:05 PM I told her not to mail me, or I would report her. She told me to. I did. Then she became the first person I've blocked in 20 years of using the internet. That includes the local BBS system when I was much younger. It's all sassy fabulous: <http://blog. liedel.org/> Blog.liedel. org From: insideoutweightloss @yahoogroups. com [mailto:insideoutweightloss @yahoogroups. com] On Behalf Of Kelley Sent: Wednesday, February 04, 2009 3:03 PM To: insideoutweightloss @yahoogroups. com Subject: RE: [insideoutweightlos s] Help , Does your email have any settings where you can block people? I'm so sorry she has targeted you. If you can't block her, I'd just delete her mail and not read it. Good luck - I hope it stops. Kelley [insideoutweightlos s] Help That horrible woman from yesterday is sending me hate mail. She's clogging up my in box and I've tried to track her down, reported her to Yahoo, but no luck. Any ideas? It's all sassy fabulous: Blog.liedel. org <http://blog. <http://blog. liedel.org/> liedel.org/> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2009 Report Share Posted February 4, 2009 Jennie, I am feeling mean and I like the way you think. She tried to post to my blog yesterday and I got her location and IP address. Those are saved. So I know who her IP is. I'm calling them after my run. It's all sassy fabulous: <http://blog.liedel.org/> Blog.liedel.org From: insideoutweightloss [mailto:insideoutweightloss ] On Behalf Of skibunny.jennie Sent: Wednesday, February 04, 2009 3:11 PM To: insideoutweightloss Subject: Re: Help I have an idea - and it is kinda evil because it would bounce it right back at her - create a rule, when you get an e-mail from her have it automatically forward right back at her and at the same time you can have it go to your " spam " file for auto deletion when you log out each time. (At least if you use outlook you can do this, not sure about with any other e-mail service though. If you e-mail me directly with your number I'll talk you through it. I have all sorts of rules in my e-mail accounts. Jennie > > That horrible woman from yesterday is sending me hate mail. She's clogging > up my in box and I've tried to track her down, reported her to Yahoo, but no > luck. Any ideas? > > > > It's all sassy fabulous: Blog.liedel.org <http://blog.liedel.org/> > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2009 Report Share Posted February 4, 2009 Set up a filter to automatically delete her emails before reading them, sort of like you would do with spam. And don't email her back; that's what she wants. Bev Subject: Help To: insideoutweightloss Date: Wednesday, February 4, 2009, 1:59 PM That horrible woman from yesterday is sending me hate mail. She's clogging up my in box and I've tried to track her down, reported her to Yahoo, but no luck. Any ideas? It's all sassy fabulous: Blog.liedel. org <http://blog. liedel.org/> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2009 Report Share Posted February 4, 2009 I'm 45. I started out using a bbs when I was 23. That was on a dumb terminal and to a local group. I met my wonderful husband there. This was before the world wide web. I had to use code and everything. I dialed in on a modem so slow you could not use it now and the thing was HUGE. I had so much fun with that group. We've all gone on. Moved, some have passed, many of us have had kids. I'm in Ann Arbor, so technology was a big deal here. In fact, I sometimes miss the simplicity of that old Bulletin Board System. It's all sassy fabulous: <http://blog.liedel.org/> Blog.liedel.org From: insideoutweightloss [mailto:insideoutweightloss ] On Behalf Of Carie McKenzie Sent: Wednesday, February 04, 2009 3:07 PM To: insideoutweightloss Subject: RE: Help 20 yrs of using the internet? From: Liedel <nancy@... <mailto:nancy%40liedel.org> > Subject: RE: Help To: insideoutweightloss <mailto:insideoutweightloss%40yahoogroups.com> Date: Wednesday, February 4, 2009, 3:05 PM I told her not to mail me, or I would report her. She told me to. I did. Then she became the first person I've blocked in 20 years of using the internet. That includes the local BBS system when I was much younger. It's all sassy fabulous: <http://blog. liedel.org/> Blog.liedel. org From: insideoutweightloss @yahoogroups. com [mailto:insideoutweightloss @yahoogroups. com] On Behalf Of Kelley Sent: Wednesday, February 04, 2009 3:03 PM To: insideoutweightloss @yahoogroups. com Subject: RE: [insideoutweightlos s] Help , Does your email have any settings where you can block people? I'm so sorry she has targeted you. If you can't block her, I'd just delete her mail and not read it. Good luck - I hope it stops. Kelley [insideoutweightlos s] Help That horrible woman from yesterday is sending me hate mail. She's clogging up my in box and I've tried to track her down, reported her to Yahoo, but no luck. Any ideas? It's all sassy fabulous: Blog.liedel. org <http://blog. <http://blog. liedel.org/> liedel.org/> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2009 Report Share Posted February 4, 2009 I got my first real computer in 1987 and used the form that came before email and UseNet, called FidoNet. It was interesting times, that's for sure. The sysop of the BBS we used most often used to call her users to warn us that the clog in the backbone cleared and we were about to get flooded with posts. Now that the internet is better, you'd think this wouldn't happen anymore, right? WRONG! I belong to one yahoogroup that, every once in a while, " breaks " yahoo. There's less than 60 of us on that list and we've posted 19,920 messages since September. That's 3,320 messages a month. The internet is an interesting place... In a message dated 2/4/2009 3:17:51 P.M. Eastern Standard Time, cariemckenzie@... writes: 20 yrs of using the internet? **************Great Deals on Dell Laptops. Starting at $499. (http://pr.atwola.com/promoclk/100000075x1217883258x1201191827/aol?redir=http://\ ad.doubleclick. net/clk;211531132;33070124;e) Quote Link to comment Share on other sites More sharing options...
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