Guest guest Posted April 25, 2005 Report Share Posted April 25, 2005 Hi Ray & Marcella, I'm very sorry to hear about your son. The babies in this group don't have the condition your son has. Your son has craniosynostosis, the babies in this group have plagiocephaly. There is a really great group for parents of babies with cranio, here is the url if you're interested, http://www.cappskids.org/board/ I'm sure they'll be able to answer all of your questions. I hope you'll keep us posted on your son. You will all be in my prayers. Take care, > > We have been told my 10 month old has 2 of the 3 plates had > prematurely fused. The pediatrician also said surgery will need to be > done. One side of his head is completely flat and he developed a very > bad cone head. > > Our questions are: > > Has anyone dealt with Dr Hall in hackensack NJ? > What is the lenght of the hospital stay? > What is the recovery process? > > My wife and I are in complete devestation right now, we have so many > questions. > > We have an appt May 2nd with Dr Hall.. > > Please any help at all would be of great help..We are located in > milford Pa. > > I have been trying to get into the 1pm chat but when I click chat on > the page here I get nothing. > > thank you, > > Ray & Marcella Liebold Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2005 Report Share Posted April 25, 2005 Hi Ray & Marcella, I'm very sorry to hear about your son. The babies in this group don't have the condition your son has. Your son has craniosynostosis, the babies in this group have plagiocephaly. There is a really great group for parents of babies with cranio, here is the url if you're interested, http://www.cappskids.org/board/ I'm sure they'll be able to answer all of your questions. I hope you'll keep us posted on your son. You will all be in my prayers. Take care, > > We have been told my 10 month old has 2 of the 3 plates had > prematurely fused. The pediatrician also said surgery will need to be > done. One side of his head is completely flat and he developed a very > bad cone head. > > Our questions are: > > Has anyone dealt with Dr Hall in hackensack NJ? > What is the lenght of the hospital stay? > What is the recovery process? > > My wife and I are in complete devestation right now, we have so many > questions. > > We have an appt May 2nd with Dr Hall.. > > Please any help at all would be of great help..We are located in > milford Pa. > > I have been trying to get into the 1pm chat but when I click chat on > the page here I get nothing. > > thank you, > > Ray & Marcella Liebold Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2005 Report Share Posted May 13, 2005 Kathann, Keep in mind I don't sell this stuff. I have been brewing for 10 years for two reasons: Respect for it's effectiveness in many health areas I personally witnessed and because it has all the attraction of home brewing wine but is a lot better for you. I subscribe to, what I like to call, the ASE health theory. That is, good health is supported by three processes: Assimilation, Stimulation and Elimination. Kombucha supports A & E. It is responsible for helping people with so many illnesses it is laughed at by the medical profession because they can't explain it. The beauty of it is, even if you don't believe the claims, it's safe and costs almost nothing to make. So why would anyone trying to improve their health not give it a fair chance unless they were just too lazy to try. I actually can understand that position, especially if one is in bad health. Just remember the day you stop being open to new experiences is the day that death beings for you. Here is a repost of something I put on the list a few weeks back: - Len 10 years ago I had severe systemic candida. My entire digestive tract was a mess. If I had a piece of fruit my belly would blow up like a beach ball in about 10 minutes and everything seemed to run through me like water. I was already lean being a runner and yet lost another 20 pounds when the symptoms were at their worst. I battled this condition for a few years once I figured out what it was and it seemed all the remedies had similar results. The symptoms would disappear and I would think I was on the mend. Then a month after completing treatments the symptoms would return worst than ever. Kombucha changed that for me. In about 6 weeks I was symptom free and pretty much cured. I kept with it for about 3 months and then stopped drinking it to test myself through the holiday season. That was more than 9 years ago. I'm a little too healthy now. ;-) I gained back the 20 plus 20 more. I drink it today because it's my beverage of choice and I have discovered other benefits. My allergies are almost nonexistent. There was a time I thought I would never breathe through my nose again. Recently my wife began drinking it because she had chronic gallstone attacks. The doctors insisted she have her gallbladder taken out. That was almost 2 years ago and she has not had an attack since shortly after she began drinking it. .... - Len Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2005 Report Share Posted May 13, 2005 If you google the Gaia Research website, they have a wonderful article based on German and Russian research on the medical benefits of kombucha. need some answers > Hi Folks, > Well I seem to be wondering about the facts on > Kombucha Tea. I realize there are those with > wonderful testimonials and then there are stories > of another sort. I'm confused now and don't know > where to turn. > I want to believe the health benefits and when I hear > that long term use of Kombucha is contrary to some > rather old and established healing methods I start to > wonder. Trevor has brought interesting and thought > provoking information. > I really don't care about where kombucha came from > but I do want to know about it's long term use. I also > believe the testimonials of others. Their use and experience > is of value to me. > I do know as human nature predicts, embellishment on > the effects of a product is somewhat natural. We want > to believe and so we can make it just a little better than > the facts. Facts are also difficult to make solid because > they can change with each person. > Since I see us all creating our own realities it's difficult > to Pin Down just one perspective. So, to all of the > members that have used Kombucha Tea for years > I'd like to hear your stories. > Thanks, > Kathann > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2005 Report Share Posted May 13, 2005 Thanks everyone for your replies. This helps. Kathann Keep in mind I don't sell this stuff. I have been brewing for 10 years for two reasons: Respect for it's effectiveness in many health areas I personally witnessed and because it has all the attraction of home brewing wine but is a lot better for you. I subscribe to, what I like to call, the ASE health theory. That is, good health is supported by three processes: Assimilation, Stimulation and Elimination. Kombucha supports A & E. It is responsible for helping people with so many illnesses it is laughed at by the medical profession because they can't explain it. The beauty of it is, even if you don't believe the claims, it's safe and costs almost nothing to make. So why would anyone trying to improve their health not give it a fair chance unless they were just too lazy to try. I actually can understand that position, especially if one is in bad health. Just remember the day you stop being open to new experiences is the day that death beings for you. Here is a repost of something I put on the list a few weeks back: - Len 10 years ago I had severe systemic candida. My entire digestive tract was a mess. If I had a piece of fruit my belly would blow up like a beach ball in about 10 minutes and everything seemed to run through me like water. I was already lean being a runner and yet lost another 20 pounds when the symptoms were at their worst. I battled this condition for a few years once I figured out what it was and it seemed all the remedies had similar results. The symptoms would disappear and I would think I was on the mend. Then a month after completing treatments the symptoms would return worst than ever. Kombucha changed that for me. In about 6 weeks I was symptom free and pretty much cured. I kept with it for about 3 months and then stopped drinking it to test myself through the holiday season. That was more than 9 years ago. I'm a little too healthy now. ;-) I gained back the 20 plus 20 more. I drink it today because it's my beverage of choice and I have discovered other benefits. My allergies are almost nonexistent. There was a time I thought I would never breathe through my nose again. Recently my wife began drinking it because she had chronic gallstone attacks. The doctors insisted she have her gallbladder taken out. That was almost 2 years ago and she has not had an attack since shortly after she began drinking it. ... - Len Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2006 Report Share Posted September 17, 2006 hes welcome here !!!!!! and so are you as for how you should help him is just be there as you problemly are for him he will have adjustment peroid to get used to the ivcd and that he will need you there to listen and understand !! but he is welcome to come ahere and so are you and every thuirsday night 9 edt time there is a chat sesson on zaplife.org your both welcome to come to ! and feel free to ask as minny question as need be i';m sure atleast oine person can answer almost any question put to the group ! there are people here who have never been shock and people like mne who have been shocked ! some only a few time i have been shocked over 1000 time so rest asured you are both welcome and we will be here to answer iany question he or you have or try to answer thim !!!! and you can email the group any time !!! welcome to the cgroup ! stacie,23 shocking life for shockign people <starblazer_2004@...> wrote: My fiancee' just had a pacemaker & dephebulator put in and he likes to find a support group to talk to people ,he just got it put in on wednesday sep-13-06 and he still is scared about it what should I do on supporting him..... Thank you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2006 Report Share Posted September 17, 2006 , my husband got his two years ago, Labor Day weekend... So I understand how you feel. Coming to this list is best thing I did in learning how to help Tom deal with his little EMT in his chest. Several things you can do to support him is be there, hold him and love him. Also, if you notice that he is depressed, suggest that he get some some professional help. Depression seems to be a pretty common side effect of heart problems. Go with him to doctor appointments, that way you will understand any directions or instructions the doctor may give. Do your research (this list is a good starting point), so that you can make a list of questions for the doctors. My husband was in such a whirl wind of confusion, anxiety and concern for me that he had trouble remembering the questions and such that he had for the doctor. So as a question would come up, I would write it down, do some research on the net for answers, then ask the doctor. That way, we would understand the medical jargon and such, because I had already looked up terms and such that I didn't know. Tom has been blessed so far that his medications have prevented any V-tach runs, so his device has not fired. However, the pacemaker part has been pacing a little bit. This has helped him not be quite so tired. When he sleeps, his heart slows way down sometimes, so the pacer give him an extra beat or two, so he gets the oxygen his brain needs. The main concerns that I have had lately are related to his forgetting to take his meds. He feels good, so he doesn't worry about them. Have your fiancée join this list, I'm sure he will find lots of support here. Or contact me off list and I will give him Tom's e-mail address, for some one on one conversation. Tom is not on the list, he relies on me to give him any needed info. I think he likes to forget about it as much as possible. Debbie, Tom's wife in Oklahoma johnsonds@...johnsonds@... -----Original Message-----From: [mailto: ]On Behalf Of Sent: Saturday, September 16, 2006 7:52 PM Subject: Need some answers My fiancee' just had a pacemaker & dephebulator put in and he likes to find a support group to talk to people ,he just got it put in on wednesday sep-13-06 and he still is scared about it what should I do on supporting him..... Thank you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2006 Report Share Posted September 17, 2006 Welcome . I am mostly a lurker rather than a poster, but this site is a welcome place for those of us with ICDs. I have had my pacemaker/defibrillator for a year, have never been shocked. You will find people here who have had lots of different experiences with their implants. I understand that your fiance is afraid; I was, too. But as time passes, so does the fear. As my doctor told me, "it's like having a little emergency room in your chest." LIghtingpaw <lightingpaw@...> wrote: hes welcome here !!!!!! and so are you as for how you should help him is just be there as you problemly are for him he will have adjustment peroid to get used to the ivcd and that he will need you there to listen and understand !! but he is welcome to come ahere and so are you and every thuirsday night 9 edt time there is a chat sesson on zaplife.org your both welcome to come to ! and feel free to ask as minny question as need be i';m sure atleast oine person can answer almost any question put to the group ! there are people here who have never been shock and people like mne who have been shocked ! some only a few time i have been shocked over 1000 time so rest asured you are both welcome and we will be here to answer iany question he or you have or try to answer thim !!!! and you can email the group any time !!! welcome to the cgroup ! stacie,23 shocking life for shockign people <starblazer_2004 > wrote: My fiancee' just had a pacemaker & dephebulator put in and he likes to find a support group to talk to people ,he just got it put in on wednesday sep-13-06 and he still is scared about it what should I do on supporting him..... Thank you What if the Hokey Pokey is really what it's all about???. Get your own web address for just $1.99/1st yr. We'll help. Small Business. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2006 Report Share Posted September 18, 2006 Hi , Welcome to the zap family. I have had my AICD for nearly 5 years now. I got it when I was 42 and had a Sudden Cardiac Death....luckily for me I was already in the hospital or I wouldn't be here now. Coming to this group for support and info has helped me tremendously. I can't say enough about the benefits of our family here. What happened to your fiance that he had to get an AICD? There are lots of different diagnosis' and events that people on here have experienced. Don't be afraid to ask anything and even to vent when things get overwhelming for you both. Take care, My fiancee' just had a pacemaker & dephebulator put in and he likes to find a support group to talk to people ,he just got it put in on wednesday sep-13-06 and he still is scared about it what should I do on supporting him..... Thank you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2006 Report Share Posted September 18, 2006 How do u log into the Thursday night chat? Do you need AOL?LIghtingpaw <lightingpaw@...> wrote: hes welcome here !!!!!! and so are you as for how you should help him is just be there as you problemly are for him he will have adjustment peroid to get used to the ivcd and that he will need you there to listen and understand !! but he is welcome to come ahere and so are you and every thuirsday night 9 edt time there is a chat sesson on zaplife.org your both welcome to come to ! and feel free to ask as minny question as need be i';m sure atleast oine person can answer almost any question put to the group ! there are people here who have never been shock and people like mne who have been shocked ! some only a few time i have been shocked over 1000 time so rest asured you are both welcome and we will be here to answer iany question he or you have or try to answer thim !!!! and you can email the group any time !!! welcome to the cgroup ! stacie,23 shocking life for shockign people <starblazer_2004 > wrote: My fiancee' just had a pacemaker & dephebulator put in and he likes to find a support group to talk to people ,he just got it put in on wednesday sep-13-06 and he still is scared about it what should I do on supporting him..... Thank you All-new - Fire up a more powerful email and get things done faster. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2006 Report Share Posted September 18, 2006 on thrusday night you go to www.zaplife.org and click the left side where it says zapchat type in the name you want to use and click and it'll log you in to the chat you dont need aol to use the chat stacie,23 shocking life for shockign people ! <pattimint1610@...> wrote: How do u log into the Thursday night chat? Do you need AOL?LIghtingpaw <lightingpawsbcglobal (DOT) net> wrote: hes welcome here !!!!!! and so are you as for how you should help him is just be there as you problemly are for him he will have adjustment peroid to get used to the ivcd and that he will need you there to listen and understand !! but he is welcome to come ahere and so are you and every thuirsday night 9 edt time there is a chat sesson on zaplife.org your both welcome to come to ! and feel free to ask as minny question as need be i';m sure atleast oine person can answer almost any question put to the group ! there are people here who have never been shock and people like mne who have been shocked ! some only a few time i have been shocked over 1000 time so rest asured you are both welcome and we will be here to answer iany question he or you have or try to answer thim !!!! and you can email the group any time !!! welcome to the cgroup ! stacie,23 shocking life for shockign people <starblazer_2004 > wrote: My fiancee' just had a pacemaker & dephebulator put in and he likes to find a support group to talk to people ,he just got it put in on wednesday sep-13-06 and he still is scared about it what should I do on supporting him..... Thank you All-new - Fire up a more powerful email and get things done faster. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2006 Report Share Posted September 19, 2006 > > My fiancee' just had a pacemaker & dephebulator put in and he likes > to find a support group to talk to people ,he just got it put in on > wednesday sep-13-06 and he still is scared about it what should I > do on supporting him..... Thank you > > >Hi marry I`m I have had icd`s since may of 1991. I was 26 and four icd`s later now 43. Best thing you can do is stand by your guy. I have not found a better site to hear about peoples stories. I think you are doing the right thing comming hear. My icd does not slow me down much. I owe my life to the icd a couple times. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2010 Report Share Posted February 9, 2010 Amenda, have y done any quantitative pcr or fish test yet. Those two test can help more to find out if gleevec dosage are good enough for your case T Sent from my Verizon Wireless BlackBerry [ ] Need some answers Hello everyone, I am having some issues with my doc. I was diagnoised 10 months ago. At that point i got 2 bmb's. I have not had 1 since. I know that the guidelines suggested for cml is to have a bmb/bma at 6 months and then every 6 months thereafter until ccr. My wbc have gone up steadily, not too bad but uncomfortable for me. My last was 11. Being on 400 gleevec it seems it should be lower. That in combo with my e1a2 transcript and gut feeling something is not exactly right i have asked him to follow the guidelines set forth by nccn. He says a bmb/bma is not needed. I would rather be safe then sorry as some of mutations don't show in blood. I have state medicaid and can not leave the state. Any suggestions. God bless, amanda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2010 Report Share Posted February 10, 2010 > > Hello everyone, I am having some issues with my doc. I was diagnoised 10 months ago. At that point i got 2 bmb's. I have not had 1 since. I know that the guidelines suggested for cml is to have a bmb/bma at 6 months and then every 6 months thereafter until ccr. My wbc have gone up steadily, not too bad but uncomfortable for me. My last was 11. Being on 400 gleevec it seems it should be lower. That in combo with my e1a2 transcript and gut feeling something is not exactly right i have asked him to follow the guidelines set forth by nccn. He says a bmb/bma is not needed. I would rather be safe then sorry as some of mutations don't show in blood. I have state medicaid and can not leave the state. Any suggestions. God bless, amanda __________________________________________ Hi , First, what state do you live in? Many doctors do NOT keep doing bmbs anymore.....sometimes just the first one and then FISH or pcr testing on peripheral (arm) blood. So, I do not see that as a problem. You do not say what the cytogenetic results of the 2 bmbs that you had were????? what % of ph+ cells? That is more important than your white count. Dr. Druker always says it is it in the normal range, it is NORMAL....and not a concern. To know if Gleevec is working for you, you need some regular test that says what your leukemic load is......can be FISH (not done so much), or mainly pcr testing. Also the mutation test is done on peripheral blood........so you do not need a bmb for that. The bmb could show other chromosomal changes which are not frequent if you disease is responding to Gleevec. Try to report the results of your 2 bmbs so that people know how to advise you.....the white count is not that relevant. C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2010 Report Share Posted February 10, 2010 Hi , According to this year's ASH recommendations, you should in deed be getting regular BMB's until you reach CCR. http://tinyurl.com/yzh3jvx To further support that, we know that PCR testing isn't very reliable until after CCR therefore you really don't want to be relying solely on it until after you've achieved CCR. I would suggest that you either find a doctor who is willing to follow the ASH recommendations or take a copy of them to your current doctor and ask him why he thinks he doesn't need to follow them. Best wishes, Tracey > > Hello everyone, I am having some issues with my doc. I was diagnoised 10 months ago. At that point i got 2 bmb's. I have not had 1 since. I know that the guidelines suggested for cml is to have a bmb/bma at 6 months and then every 6 months thereafter until ccr. My wbc have gone up steadily, not too bad but uncomfortable for me. My last was 11. Being on 400 gleevec it seems it should be lower. That in combo with my e1a2 transcript and gut feeling something is not exactly right i have asked him to follow the guidelines set forth by nccn. He says a bmb/bma is not needed. I would rather be safe then sorry as some of mutations don't show in blood. I have state medicaid and can not leave the state. Any suggestions. God bless, amanda > Quote Link to comment Share on other sites More sharing options...
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