Guest guest Posted August 11, 2006 Report Share Posted August 11, 2006 Sami has swollen lymph nodes in her neck, her left one is much bigger than he right. The Dr. is watching it. Has anyone had this experience with one so much bigger than the other? Trish --------------------------------- Stay in the know. Pulse on the new .com. Check it out. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2006 Report Share Posted August 11, 2006 > Yes I have. Sam getws one that is huge in her necka nd one episode it got red so I rushed her in and they told me there was nothing wrong - probably red from sticking out and getting irritated. I didn't buy it but it did go back to normal but the same one gets huge with each episode. I am told that is normal. Letme know if you are told something else. Lori mom to > From: trish santos <summerday148@...> > Date: 2006/08/11 Fri AM 08:45:55 EDT > > Subject: one more question... > > Sami has swollen lymph nodes in her neck, her left one is much bigger than he right. The Dr. is watching it. Has anyone had this experience with one so much bigger than the other? > Trish > > > > --------------------------------- > Stay in the know. Pulse on the new .com. Check it out. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2006 Report Share Posted August 11, 2006 The dr said he was a little concerned, but he was going to watch it. We dont go back to Children's for 4 months. He said to call immediatly if it got red, much bigger, or started causing pain. Trish slsjasrodgers@... wrote: > Yes I have. Sam getws one that is huge in her necka nd one episode it got red so I rushed her in and they told me there was nothing wrong - probably red from sticking out and getting irritated. I didn't buy it but it did go back to normal but the same one gets huge with each episode. I am told that is normal. Letme know if you are told something else. Lori mom to > From: trish santos <summerday148@...> > Date: 2006/08/11 Fri AM 08:45:55 EDT > > Subject: one more question... > > Sami has swollen lymph nodes in her neck, her left one is much bigger than he right. The Dr. is watching it. Has anyone had this experience with one so much bigger than the other? > Trish > > > > --------------------------------- > Stay in the know. Pulse on the new .com. Check it out. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2006 Report Share Posted August 11, 2006 This past year Aidan had a HUGE lump on his neck. About the size of the palm of your hand . . . and he wouldn't move his neck at all - he would rotate his little body to look at you. He was fevering at the time as well. They did an ultrasound on it and said it was okay - just swollen. No cancer. It went away and it came back a few more times pretty large (just on the same side) but it always goes away with the fever. I don't know what causes it . . . Maybe your question will help me as well! But I am right there with you! Hannah > > Sami has swollen lymph nodes in her neck, her left one is much bigger than he right. The Dr. is watching it. Has anyone had this experience with one so much bigger than the other? > Trish > > > > --------------------------------- > Stay in the know. Pulse on the new .com. Check it out. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2006 Report Share Posted August 11, 2006 My son was admitted into the hospital because the lymph node on the left side of his neck was so large. They measured it everyday he was there to make sure it wasn't getting bigger. What scared me is that they had him in the wing of the hospital with all of the cancer kids, so I went crazy. They did a CT scan and a ultrasound to check for cancer too! I don't know if that is enough or not, but I would also like to know! a mom to 3 hannahls73 <hannahlsmith@...> wrote: This past year Aidan had a HUGE lump on his neck. About the size of the palm of your hand . . . and he wouldn't move his neck at all - he would rotate his little body to look at you. He was fevering at the time as well. They did an ultrasound on it and said it was okay - just swollen. No cancer. It went away and it came back a few more times pretty large (just on the same side) but it always goes away with the fever. I don't know what causes it . . . Maybe your question will help me as well! But I am right there with you! Hannah > > Sami has swollen lymph nodes in her neck, her left one is much bigger than he right. The Dr. is watching it. Has anyone had this experience with one so much bigger than the other? > Trish > > > > --------------------------------- > Stay in the know. Pulse on the new .com. Check it out. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2006 Report Share Posted August 13, 2006 15 ml prednisone seems very extreme, especially for a child weighing only 42 pounds! I would get a second opinion on that dosage (i.e. your own pediatrician). Most children take between (3 ml - 8 ml). My daughter who is close to 80 pounds just got bumped up to 11 ml. > > > > > > Sami has swollen lymph nodes in her neck, her left one is much > > bigger than he right. The Dr. is watching it. Has anyone had this > > experience with one so much bigger than the other? > > > Trish > > > > > > > > > > > > --------------------------------- > > > Stay in the know. Pulse on the new .com. Check it out. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2006 Report Share Posted August 13, 2006 Dosing with Prednisone: 1-2mg per Kg. Prednisone side effects (long term) These are a few: Long-term use of prednisone can lead to adrenal suppression. Side effects of treatment with prednisone can be depression, euphoria, hypertension, nausea, anorexia, high blood sugar levels, and increased susceptibility to infection. drug is immunosuppressive and can increase the risk of getting opportunistic infections. hair growth stunting of growth (have to monitor height of child on long term prednisone) The effects are very critical when LONG term therapy is used. Short term therapy usually causes the euphoria and anxiety with mood swings... You can easily research this subject and read NUMEROUS facts about the danger of steroids.... by searching on Google or ... or visiting reputable sites such as NIH.gov or medscape.com or other monitored professional sites. In a nutshell..... I can summarize for you... The amount and dose is important to monitor.... and only a child caregiver, parent or guardian can determine the risks and weigh the benefits.... Children with Asthma HAVE to use Prednisone as do children with cancer... Life threatening.... and long term use is almost a must. With children.... there is a debate as to long term. If a child is using a single dose every month to rid their body of fever.... it seems to be accepted that the risks are relatively low.... The challenge is when the child requires maxing the dose and repeating the MAX dose in 24 hours and sometimes the frequency of onset is effected causing more Prednisone in a couple of weeks. If the child gets more and more Prednisone it has been documented to be a danger. Thus only a parent etc... and physician can conclude the benefit of the drug. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2006 Report Share Posted August 13, 2006 My daughter who is 35.5 pounds was prescribed 4 teaspoons of prednisone (5mg/5ml). We only gave her about one tsp though. My question is is everyone else using the same prednisone solution 5mg/5ml. When I saw how much your children take it made me wonder. Re: one more question... 15 ml prednisone seems very extreme, especially for a child weighing only 42 pounds! I would get a second opinion on that dosage (i.e. your own pediatrician). Most children take between (3 ml - 8 ml). My daughter who is close to 80 pounds just got bumped up to 11 ml. > > > > > > Sami has swollen lymph nodes in her neck, her left one is much > > bigger than he right. The Dr. is watching it. Has anyone had this > > experience with one so much bigger than the other? > > > Trish > > > > > > > > > > > > --------------------------------- > > > Stay in the know. Pulse on the new .com. Check it out. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2006 Report Share Posted August 13, 2006 Prednisone and Orapred ONLY comes in a dose of 5mg/5ml The normal dosing is 1-2mg per kg 1kg equals 2.2lb Fran Fran Bulone RN Mom to ph 7yr Waxhaw NC / Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2006 Report Share Posted August 14, 2006 Thanks so much for your information. It really does help! Are you planning on attending the conference next month? Trish Fran Bulone <fbulone@...> wrote: Dosing with Prednisone: 1-2mg per Kg. Prednisone side effects (long term) These are a few: Long-term use of prednisone can lead to adrenal suppression. Side effects of treatment with prednisone can be depression, euphoria, hypertension, nausea, anorexia, high blood sugar levels, and increased susceptibility to infection. drug is immunosuppressive and can increase the risk of getting opportunistic infections. hair growth stunting of growth (have to monitor height of child on long term prednisone) The effects are very critical when LONG term therapy is used. Short term therapy usually causes the euphoria and anxiety with mood swings... You can easily research this subject and read NUMEROUS facts about the danger of steroids.... by searching on Google or ... or visiting reputable sites such as NIH.gov or medscape.com or other monitored professional sites. In a nutshell..... I can summarize for you... The amount and dose is important to monitor.... and only a child caregiver, parent or guardian can determine the risks and weigh the benefits.... Children with Asthma HAVE to use Prednisone as do children with cancer... Life threatening.... and long term use is almost a must. With children.... there is a debate as to long term. If a child is using a single dose every month to rid their body of fever.... it seems to be accepted that the risks are relatively low.... The challenge is when the child requires maxing the dose and repeating the MAX dose in 24 hours and sometimes the frequency of onset is effected causing more Prednisone in a couple of weeks. If the child gets more and more Prednisone it has been documented to be a danger. Thus only a parent etc... and physician can conclude the benefit of the drug. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2006 Report Share Posted August 14, 2006 >>>what do you consider young? (Sami will be 6 at the end of the month, she weighs around 44 pounds)>>> Trish, It depends on weight. The more pounds the more liquid you need to give with the 5mg/5mls. So the more weight you would want to give the higher dose... because it would be LESS to swallow. Since the taste is terrible, I would opt for the 15mg/5ml to allow the child to take the med with a little more ease. If you calculate her weight into kgs then you will see that you can give less cc's with the 15mg/5cc Does that make sense? Fran Fran Bulone RN Mom to ph 7yr Waxhaw NC / Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2006 Report Share Posted August 14, 2006 Trish, I would LOVE to go to the conference.... But I am unsure right now. Lori has really been wonderful to me and I would love to get up there.... BUT we are scheduled to go to NIH for our 6 month follow up heading out on Sept 18th.... so I am not sure if I want to make a trip just before. BUT we may still go. With the change of the " guards " at the NIH.... and leaving Kastner's team, and Bev coming back for now.... I am not sure if we have a " REAL " appointment! LOL made lots of mistakes since she started and it has not gotten better. Bev is on vacation until after the 27th.... and I am sure she will be swamped upon return.... I will wait to see what happens by the first of September and then decide if we can go.... Talk soon. God Bless Fran Fran Bulone RN Mom to ph 7yr Waxhaw NC / Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2006 Report Share Posted August 14, 2006 Yes, it sounds to me she is getting the right dosage. My husband & I have made the decision that we will give her up to 2 doses a month. Thanks again Fran Bulone <fbulone@...> wrote: >>>what do you consider young? (Sami will be 6 at the end of the month, she weighs around 44 pounds)>>> Trish, It depends on weight. The more pounds the more liquid you need to give with the 5mg/5mls. So the more weight you would want to give the higher dose... because it would be LESS to swallow. Since the taste is terrible, I would opt for the 15mg/5ml to allow the child to take the med with a little more ease. If you calculate her weight into kgs then you will see that you can give less cc's with the 15mg/5cc Does that make sense? Fran Fran Bulone RN Mom to ph 7yr Waxhaw NC / Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2006 Report Share Posted August 14, 2006 My daughter is 3 and weighs about 26 lbs. We were told to give her 6 ml of 15mg/5ml Orapred - and not more than 4 times a month. Hope this helps. Mom to (5) and Audrey (3 ) --- Daughtry <michelle@...> wrote: > My daughter who is 35.5 pounds was prescribed 4 > teaspoons of prednisone > (5mg/5ml). We only gave her about one tsp though. > My question is is > everyone else using the same prednisone solution > 5mg/5ml. When I saw how > much your children take it made me wonder. > Re: one more question... > > > 15 ml prednisone seems very extreme, especially > for a child weighing > only 42 pounds! I would get a second opinion on > that dosage (i.e. your > own pediatrician). Most children take between (3 > ml - 8 ml). My > daughter who is close to 80 pounds just got bumped > up to 11 ml. > > > > > > > > > > Sami has swollen lymph nodes in her neck, > her left one is much > > > bigger than he right. The Dr. is watching it. > Has anyone had this > > > experience with one so much bigger than the > other? > > > > Trish > > > > > > > > > > > > > > > > --------------------------------- > > > > Stay in the know. Pulse on the new > .com. Check it out. > > > > > > > > [Non-text portions of this message have been > removed] > > > > > > > > > > > > > > > > > > > > > > > > > [Non-text portions of this message have been > removed] > > > > > > > > > > > > > > > > > --------------------------------- > > Messenger with Voice. Make PC-to-Phone > Calls to the US (and > 30+ countries) for 2¢/min or less. > > > > [Non-text portions of this message have been > removed] > > > > > > > > > [Non-text portions of this message have been > removed] > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2006 Report Share Posted August 15, 2006 Sami and I have decided to go...so I hope to meet you there. Trish Fran Bulone <fbulone@...> wrote: Trish, I would LOVE to go to the conference.... But I am unsure right now. Lori has really been wonderful to me and I would love to get up there.... BUT we are scheduled to go to NIH for our 6 month follow up heading out on Sept 18th.... so I am not sure if I want to make a trip just before. BUT we may still go. With the change of the " guards " at the NIH.... and leaving Kastner's team, and Bev coming back for now.... I am not sure if we have a " REAL " appointment! LOL made lots of mistakes since she started and it has not gotten better. Bev is on vacation until after the 27th.... and I am sure she will be swamped upon return.... I will wait to see what happens by the first of September and then decide if we can go.... Talk soon. God Bless Fran Fran Bulone RN Mom to ph 7yr Waxhaw NC / Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2006 Report Share Posted August 15, 2006 Does anyone have the phone number for the hotel that is offering the special rate for those attending the conference? I remember hearing that the reservation must be made by Aug. 16th. Thanks, Ellyn Mom of (Periodic Fever) (5), Alyssa(8), and Kate(4) Philadelphia, PA trish santos <summerday148@...> Sent by: 08/15/2006 08:31 AM Please respond to cc: Subject: Re: Re: one more question... Sami and I have decided to go...so I hope to meet you there. Trish Fran Bulone <fbulone@...> wrote: Trish, I would LOVE to go to the conference.... But I am unsure right now. Lori has really been wonderful to me and I would love to get up there.... BUT we are scheduled to go to NIH for our 6 month follow up heading out on Sept 18th.... so I am not sure if I want to make a trip just before. BUT we may still go. With the change of the " guards " at the NIH.... and leaving Kastner's team, and Bev coming back for now.... I am not sure if we have a " REAL " appointment! LOL made lots of mistakes since she started and it has not gotten better. Bev is on vacation until after the 27th.... and I am sure she will be swamped upon return.... I will wait to see what happens by the first of September and then decide if we can go.... Talk soon. God Bless Fran Fran Bulone RN Mom to ph 7yr Waxhaw NC / Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2006 Report Share Posted August 15, 2006 Thanks . Our doc called in a script yesterday for Orapred for us to try with 's next fever. He said she would only have to take 5 ml of that. Mom to (3 ) Re: one more question... > > > 15 ml prednisone seems very extreme, especially > for a child weighing > only 42 pounds! I would get a second opinion on > that dosage (i.e. your > own pediatrician). Most children take between (3 > ml - 8 ml). My > daughter who is close to 80 pounds just got bumped > up to 11 ml. > > > > > > > > > > Sami has swollen lymph nodes in her neck, > her left one is much > > > bigger than he right. The Dr. is watching it. > Has anyone had this > > > experience with one so much bigger than the > other? > > > > Trish > > > > > > > > > > > > > > > > --------------------------------- > > > > Stay in the know. Pulse on the new > .com. Check it out. > > > > > > > > [Non-text portions of this message have been > removed] > > > > > > > > > > > > > > > > > > > > > > > > > [Non-text portions of this message have been > removed] > > > > > > > > > > > > > > > > > --------------------------------- > > Messenger with Voice. Make PC-to-Phone > Calls to the US (and > 30+ countries) for 2¢/min or less. > > > > [Non-text portions of this message have been > removed] > > > > > > > > > [Non-text portions of this message have been > removed] > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2006 Report Share Posted August 15, 2006 I got a room on Hotwire for the Holiday Inn burg for $52.00 a night. Trish ellyn.trickey@... wrote: Does anyone have the phone number for the hotel that is offering the special rate for those attending the conference? I remember hearing that the reservation must be made by Aug. 16th. Thanks, Ellyn Mom of (Periodic Fever) (5), Alyssa(8), and Kate(4) Philadelphia, PA trish santos <summerday148@...> Sent by: 08/15/2006 08:31 AM Please respond to cc: Subject: Re: Re: one more question... Sami and I have decided to go...so I hope to meet you there. Trish Fran Bulone <fbulone@...> wrote: Trish, I would LOVE to go to the conference.... But I am unsure right now. Lori has really been wonderful to me and I would love to get up there.... BUT we are scheduled to go to NIH for our 6 month follow up heading out on Sept 18th.... so I am not sure if I want to make a trip just before. BUT we may still go. With the change of the " guards " at the NIH.... and leaving Kastner's team, and Bev coming back for now.... I am not sure if we have a " REAL " appointment! LOL made lots of mistakes since she started and it has not gotten better. Bev is on vacation until after the 27th.... and I am sure she will be swamped upon return.... I will wait to see what happens by the first of September and then decide if we can go.... Talk soon. God Bless Fran Fran Bulone RN Mom to ph 7yr Waxhaw NC / Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2006 Report Share Posted August 15, 2006 Fran and everyone...I am away with the boys until Thursday, and only have a sec to check emails...BUT, if you plan to attend the PFS Conference on Sept. 9th, you MUST get a registration form from me and send it in! We need to have a count! Thanks. Lori --- trish santos <summerday148@...> wrote: > I got a room on Hotwire for the Holiday Inn > burg for $52.00 a night. > Trish > > > ellyn.trickey@... wrote: > Does anyone have the phone number for the > hotel that is offering the > special rate for those attending the conference? > I remember hearing that the reservation must be made > by Aug. 16th. > > Thanks, > > Ellyn > Mom of (Periodic Fever) (5), > Alyssa(8), and Kate(4) > Philadelphia, PA > > trish santos <summerday148@...> > Sent by: > 08/15/2006 08:31 AM > Please respond to > > > cc: > Subject: Re: Re: one more question... > > Sami and I have decided to go...so I hope to meet > you there. > Trish > > Fran Bulone <fbulone@...> wrote: > Trish, > I would LOVE to go to the conference.... But I am > unsure right now. Lori > has really been wonderful to me and I would love to > get up there.... BUT > we are scheduled to go to NIH for our 6 month follow > up heading out on > Sept 18th.... so I am not sure if I want to make a > trip just before. BUT > we may still go. > > With the change of the " guards " at the NIH.... and > leaving > Kastner's team, and Bev coming back for now.... I am > not sure if we have a > " REAL " appointment! LOL made lots of mistakes > since she started and > it has not gotten better. Bev is on vacation until > after the 27th.... and > I am sure she will be swamped upon return.... I will > wait to see what > happens by the first of September and then decide if > we can go.... > > Talk soon. > God Bless > Fran > Fran Bulone RN > Mom to ph 7yr > Waxhaw NC > / > > [Non-text portions of this message have been > removed] > > --------------------------------- > How low will we go? Check out Messenger's low > PC-to-Phone call > rates. > > [Non-text portions of this message have been > removed] > > [Non-text portions of this message have been > removed] > > > > > > > --------------------------------- > Get your email and more, right on the new .com > > > [Non-text portions of this message have been > removed] > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2006 Report Share Posted August 15, 2006 I sent you my info and haven't recieved a form yet. Did you send it? or should I resend my info? Trish Lori Todaro <loritodaro@...> wrote: Fran and everyone...I am away with the boys until Thursday, and only have a sec to check emails...BUT, if you plan to attend the PFS Conference on Sept. 9th, you MUST get a registration form from me and send it in! We need to have a count! Thanks. Lori --- trish santos <summerday148@...> wrote: > I got a room on Hotwire for the Holiday Inn > burg for $52.00 a night. > Trish > > > ellyn.trickey@... wrote: > Does anyone have the phone number for the > hotel that is offering the > special rate for those attending the conference? > I remember hearing that the reservation must be made > by Aug. 16th. > > Thanks, > > Ellyn > Mom of (Periodic Fever) (5), > Alyssa(8), and Kate(4) > Philadelphia, PA > > trish santos <summerday148@...> > Sent by: > 08/15/2006 08:31 AM > Please respond to > > > cc: > Subject: Re: Re: one more question... > > Sami and I have decided to go...so I hope to meet > you there. > Trish > > Fran Bulone <fbulone@...> wrote: > Trish, > I would LOVE to go to the conference.... But I am > unsure right now. Lori > has really been wonderful to me and I would love to > get up there.... BUT > we are scheduled to go to NIH for our 6 month follow > up heading out on > Sept 18th.... so I am not sure if I want to make a > trip just before. BUT > we may still go. > > With the change of the " guards " at the NIH.... and > leaving > Kastner's team, and Bev coming back for now.... I am > not sure if we have a > " REAL " appointment! LOL made lots of mistakes > since she started and > it has not gotten better. Bev is on vacation until > after the 27th.... and > I am sure she will be swamped upon return.... I will > wait to see what > happens by the first of September and then decide if > we can go.... > > Talk soon. > God Bless > Fran > Fran Bulone RN > Mom to ph 7yr > Waxhaw NC > / > > [Non-text portions of this message have been > removed] > > --------------------------------- > How low will we go? Check out Messenger's low > PC-to-Phone call > rates. > > [Non-text portions of this message have been > removed] > > [Non-text portions of this message have been > removed] > > > > > > > --------------------------------- > Get your email and more, right on the new .com > > > [Non-text portions of this message have been > removed] > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2006 Report Share Posted August 15, 2006 Please send me the registration form as well! Ellyn trish santos <summerday148@...> Sent by: 08/15/2006 03:17 PM Please respond to cc: Subject: Re: Re: one more question... I sent you my info and haven't recieved a form yet. Did you send it? or should I resend my info? Trish Lori Todaro <loritodaro@...> wrote: Fran and everyone...I am away with the boys until Thursday, and only have a sec to check emails...BUT, if you plan to attend the PFS Conference on Sept. 9th, you MUST get a registration form from me and send it in! We need to have a count! Thanks. Lori --- trish santos <summerday148@...> wrote: > I got a room on Hotwire for the Holiday Inn > burg for $52.00 a night. > Trish > > > ellyn.trickey@... wrote: > Does anyone have the phone number for the > hotel that is offering the > special rate for those attending the conference? > I remember hearing that the reservation must be made > by Aug. 16th. > > Thanks, > > Ellyn > Mom of (Periodic Fever) (5), > Alyssa(8), and Kate(4) > Philadelphia, PA > > trish santos <summerday148@...> > Sent by: > 08/15/2006 08:31 AM > Please respond to > > > cc: > Subject: Re: Re: one more question... > > Sami and I have decided to go...so I hope to meet > you there. > Trish > > Fran Bulone <fbulone@...> wrote: > Trish, > I would LOVE to go to the conference.... But I am > unsure right now. Lori > has really been wonderful to me and I would love to > get up there.... BUT > we are scheduled to go to NIH for our 6 month follow > up heading out on > Sept 18th.... so I am not sure if I want to make a > trip just before. BUT > we may still go. > > With the change of the " guards " at the NIH.... and > leaving > Kastner's team, and Bev coming back for now.... I am > not sure if we have a > " REAL " appointment! LOL made lots of mistakes > since she started and > it has not gotten better. Bev is on vacation until > after the 27th.... and > I am sure she will be swamped upon return.... I will > wait to see what > happens by the first of September and then decide if > we can go.... > > Talk soon. > God Bless > Fran > Fran Bulone RN > Mom to ph 7yr > Waxhaw NC > / > > [Non-text portions of this message have been > removed] > > --------------------------------- > How low will we go? Check out Messenger's low > PC-to-Phone call > rates. > > [Non-text portions of this message have been > removed] > > [Non-text portions of this message have been > removed] > > > > > > > --------------------------------- > Get your email and more, right on the new .com > > > [Non-text portions of this message have been > removed] > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2006 Report Share Posted August 16, 2006 Lori, any chance that people who cannot attend the PFS Conference in Hershey next month will be able to purchase transcripts/tapes of the presentations and discussions after the event? I would be most willing to do so. Kate, Mom to Ben, 3 yrs old (diagnosed ; possible HIDS) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2006 Report Share Posted August 16, 2006 Me too . . . I would love to read what this was all about - there is no way that we can make it with school starting and living in Texas . . . oh I wish we could! Hannah > > > Lori, any chance that people who cannot attend the PFS Conference in Hershey > next month will be able to purchase transcripts/tapes of the presentations > and discussions after the event? > I would be most willing to do so. > > Kate, Mom to Ben, 3 yrs old (diagnosed ; possible HIDS) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2006 Report Share Posted August 16, 2006 Hi Trish. I do not have a mailing address for you. The reg forms are ready and many have been mailed out, I'd be happy to send you one. Please forward your mailing address. Fondly, Lori --- trish santos <summerday148@...> wrote: > I sent you my info and haven't recieved a form yet. > Did you send it? or should I resend my info? Trish > > > Lori Todaro <loritodaro@...> wrote: > Fran and everyone...I am away with the > boys until > Thursday, and only have a sec to check emails...BUT, > if you plan to attend the PFS Conference on Sept. > 9th, > you MUST get a registration form from me and send it > in! We need to have a count! Thanks. Lori > > --- trish santos <summerday148@...> wrote: > > > I got a room on Hotwire for the Holiday Inn > > burg for $52.00 a night. > > Trish > > > > > > ellyn.trickey@... wrote: > > Does anyone have the phone number for the > > hotel that is offering the > > special rate for those attending the conference? > > I remember hearing that the reservation must be > made > > by Aug. 16th. > > > > Thanks, > > > > Ellyn > > Mom of (Periodic Fever) (5), > > Alyssa(8), and Kate(4) > > Philadelphia, PA > > > > trish santos <summerday148@...> > > Sent by: > > 08/15/2006 08:31 AM > > Please respond to > > > > > > cc: > > Subject: Re: Re: one more question... > > > > Sami and I have decided to go...so I hope to meet > > you there. > > Trish > > > > Fran Bulone <fbulone@...> wrote: > > Trish, > > I would LOVE to go to the conference.... But I am > > unsure right now. Lori > > has really been wonderful to me and I would love > to > > get up there.... BUT > > we are scheduled to go to NIH for our 6 month > follow > > up heading out on > > Sept 18th.... so I am not sure if I want to make a > > trip just before. BUT > > we may still go. > > > > With the change of the " guards " at the NIH.... and > > leaving > > Kastner's team, and Bev coming back for now.... I > am > > not sure if we have a > > " REAL " appointment! LOL made lots of > mistakes > > since she started and > > it has not gotten better. Bev is on vacation until > > after the 27th.... and > > I am sure she will be swamped upon return.... I > will > > wait to see what > > happens by the first of September and then decide > if > > we can go.... > > > > Talk soon. > > God Bless > > Fran > > Fran Bulone RN > > Mom to ph 7yr > > Waxhaw NC > > / > > > > [Non-text portions of this message have been > > removed] > > > > --------------------------------- > > How low will we go? Check out Messenger's > low > > PC-to-Phone call > > rates. > > > > [Non-text portions of this message have been > > removed] > > > > [Non-text portions of this message have been > > removed] > > > > > > > > > > > > > > --------------------------------- > > Get your email and more, right on the new > .com > > > > > > [Non-text portions of this message have been > > removed] > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2006 Report Share Posted August 16, 2006 Hi Kate. Thnaks for asking. That sounds like a wonderful idea, however, it's not been worked into the presentation YET..... This is our second annual, so, there will be many opportunitities to expand and grow...especially with technology growing and changing. I wish I could be of more help-sorry!! Thanks so much! Love and prayers, Lori --- Lenz <wellsgirl93@...> wrote: > > Lori, any chance that people who cannot attend the > PFS Conference in Hershey > next month will be able to purchase > transcripts/tapes of the presentations > and discussions after the event? > I would be most willing to do so. > > Kate, Mom to Ben, 3 yrs old (diagnosed ; > possible HIDS) > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.