Guest guest Posted September 7, 2001 Report Share Posted September 7, 2001 Dear Fran, I'm so sorry to hear about your Father. Having been able to spend that time with him before he passed away is probably a comfort... Life is precious, relationships are precious, & all the good memories are a treasure to hold forever. Please accept my condolences about your Dad. ~Pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2003 Report Share Posted January 30, 2003 * -----Original Message----- * From: Pat [mailto:pturner1@...] * We are near then, I come down to ville to go to the * pecan park flea market *squeals* That's my favorite flea market! * and then again when we have to have * a get away, I love the embassy suites on Bay Meadows. That's right across from our old apartments and near where my husband works. * Can * you get any of the EO's or other supplies from the Flea * Market? There's a woman in there --- I forget her name--- who sells the raw herbs and the essential oils. However, I get most of mine from Earth Gifts, which is down in th Five Points district, off of I-95 and the Fuller Warren bridge. Fran Wolfe- ville, FL AIM TygerMoon Foxx | ICQ 8393998 | Y! pager tigrmoon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2004 Report Share Posted June 3, 2004 My email is fbulone@... Fran A Bulone Mom to ph 4yrs old Waxhaw, NC Owner & Moderator Group Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2004 Report Share Posted June 3, 2004 My email is fbulone@... Fran A Bulone Mom to ph 4yrs old Waxhaw, NC Owner & Moderator Group Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2004 Report Share Posted August 25, 2004 Hi Jay, Congratulations on testing negative for all the genetic fever disorders! Just a quick question. You say that you'll be having an endocrinologist monitor your " little peanut's " condition. LOL At any rate, I'm wondering, if you feel comfortable doing so, if you could run something by the doc. At one point on the site, a lot of mom's were saying that they're kids' fevers coincided with their menstrual periods. I know that when a group of women live together for a long enough period of time, the same thing begins to happen in that they all menstruate around the same of month. There are a number of theories about why that happens involving light hours, etc., but essentially, they get on the same " hormonal " cycle. When the folks on the site were talking about that, I ran it by my doc to see if he thought the fevers could have some sort of connection to the child's hormone levels (although I would have no idea WHICH hormone to test). He thought it sounded " wayout there " , but recommended that we talk to an endocrinologist to get his take on the theory that the fevers might somehow be linked to hormones. I never followed up on it because soon after that, our son had his tonsillectomy and stopped fevering. So, that part of our lives was gratefully put into our past. At any rate, let me know if you feel comfortable bringing that possibility up the next time you see the doc. Thanks! Rosemarie Mom to Danny age 10 Denver, CO Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2004 Report Share Posted August 25, 2004 Hi Jay, Congratulations on testing negative for all the genetic fever disorders! Just a quick question. You say that you'll be having an endocrinologist monitor your " little peanut's " condition. LOL At any rate, I'm wondering, if you feel comfortable doing so, if you could run something by the doc. At one point on the site, a lot of mom's were saying that they're kids' fevers coincided with their menstrual periods. I know that when a group of women live together for a long enough period of time, the same thing begins to happen in that they all menstruate around the same of month. There are a number of theories about why that happens involving light hours, etc., but essentially, they get on the same " hormonal " cycle. When the folks on the site were talking about that, I ran it by my doc to see if he thought the fevers could have some sort of connection to the child's hormone levels (although I would have no idea WHICH hormone to test). He thought it sounded " wayout there " , but recommended that we talk to an endocrinologist to get his take on the theory that the fevers might somehow be linked to hormones. I never followed up on it because soon after that, our son had his tonsillectomy and stopped fevering. So, that part of our lives was gratefully put into our past. At any rate, let me know if you feel comfortable bringing that possibility up the next time you see the doc. Thanks! Rosemarie Mom to Danny age 10 Denver, CO Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2004 Report Share Posted August 26, 2004 Mathieu's fevers come due to intestinal flare ups. So, Mathieu's fevers do have an explanation even though his doctor is questioning the diagnosis until we get a positive tissue sample. We are still treating him with the medication because to put it simply, it works when he is on it. I feel sorry for families that don't know why their children are running cyclic fevers. The Endo will monitor his GH and bone age so we can determine when or if we need to start him on Growth hormone. I can ask an Endocrinologist that question for you. It probably won't be until January before I get another visit with one. As far as the Mestrual cycles.....I have a good one to tell. My husband and I moved into brand new housing last year in New Orleans along with 17 other families on the same street (Townhomes). When we had been there 30 days, all the ladies complained of thinking they were pregnant because they missed there August periods. (I knew I wasn't because I had been thru this before) Well, in September wouldn't you know it, We all had our periods within 5-7 days of each other. It was like that like clock work the whole year. We were a very close bunch of women; I miss them. I have moved again to Sand Diego just recently, but thank goodness I didn't go thru that again. LOL Jay I'm wondering, if you feel comfortable doing so, if you could run something by the doc. When the folks on the site were talking about that, I ran it by my doc to see if he thought the fevers could have some sort of connection to the child's hormone levels (although I would have no idea WHICH hormone to test). He thought it sounded " wayout there " , but recommended that we talk to an endocrinologist to get his take on the theory that the fevers might somehow be linked to hormones. I never followed up on it because soon after that, our son had his tonsillectomy and stopped fevering. So, that part of our lives was gratefully put into our past. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2004 Report Share Posted August 26, 2004 Mathieu's fevers come due to intestinal flare ups. So, Mathieu's fevers do have an explanation even though his doctor is questioning the diagnosis until we get a positive tissue sample. We are still treating him with the medication because to put it simply, it works when he is on it. I feel sorry for families that don't know why their children are running cyclic fevers. The Endo will monitor his GH and bone age so we can determine when or if we need to start him on Growth hormone. I can ask an Endocrinologist that question for you. It probably won't be until January before I get another visit with one. As far as the Mestrual cycles.....I have a good one to tell. My husband and I moved into brand new housing last year in New Orleans along with 17 other families on the same street (Townhomes). When we had been there 30 days, all the ladies complained of thinking they were pregnant because they missed there August periods. (I knew I wasn't because I had been thru this before) Well, in September wouldn't you know it, We all had our periods within 5-7 days of each other. It was like that like clock work the whole year. We were a very close bunch of women; I miss them. I have moved again to Sand Diego just recently, but thank goodness I didn't go thru that again. LOL Jay I'm wondering, if you feel comfortable doing so, if you could run something by the doc. When the folks on the site were talking about that, I ran it by my doc to see if he thought the fevers could have some sort of connection to the child's hormone levels (although I would have no idea WHICH hormone to test). He thought it sounded " wayout there " , but recommended that we talk to an endocrinologist to get his take on the theory that the fevers might somehow be linked to hormones. I never followed up on it because soon after that, our son had his tonsillectomy and stopped fevering. So, that part of our lives was gratefully put into our past. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2005 Report Share Posted January 29, 2005 Kathleen You are a member already? You are posting. If you were not a member you would not be able to post. Why are you trying to sign up again? Can you go to the site? / If you get there you may be asked for your password. Then just go to the file section. Help me help you!! <smile> If you continue having a prob, contact me off line at fbulone@... We will figure this out. Fran Fran A Bulone Mom to ph 5 yrs old Waxhaw, NC Owner & Moderator Group Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2005 Report Share Posted February 1, 2005 Hi Fran, I am a member but I cant remember my code to get into the archives, so I thought I would try to sign up again.....sorry, I am somewhat computer illiterate..... Amy Kathleen's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2005 Report Share Posted February 23, 2005 This is research so once accepted their are no medical billing issues. The contact info is at the website under NIH.... Beverly is the new nurse who will place you on the list Beverly Barham, RN... Her number is toll free 1-888-996-4267 # 1. Hope that helps Fran Fran A Bulone Mom to ph 5 yrs old Waxhaw, NC Owner & Moderator Group Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2005 Report Share Posted February 23, 2005 thanks Fran Just was making sure that even in canada that i wasnt going to get billed anything! so.. I just pay for food.. stay at the childrens inn and get myself there then? Re: Fran This is research so once accepted their are no medical billing issues. The contact info is at the website under NIH.... Beverly is the new nurse who will place you on the list Beverly Barham, RN... Her number is toll free 1-888-996-4267 # 1. Hope that helps Fran Fran A Bulone Mom to ph 5 yrs old Waxhaw, NC Owner & Moderator Group Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2005 Report Share Posted February 23, 2005 Yes... I paid for airfare... the first visit.... and Children's Inn was free.... and WONDERFUL.... you stay two nights... get there the day before.... check in and relax... for a busy morning... we began at 7:00am.... but luckily... we were done by noon.... and off to lunch and then to the game room at the Inn! We stayed not knowing the day would end so early... we had heard some visits last longer having to wait for the docs or the lab etc... I LUCKED out. I am told once accepted IF you need to go back... the social worker can assist with airfares. But this study does not always require our kids to go back unless genetic mutations are found or if the clinical presentation of the specific child leaves Kastner to believe there is more he may help with or if he thinks the child may still have one of the genetic disorders but no mutation is found. Some of the others here may help with the follow ups since we do have children here who have been diagnosed with the other fever disorders and do go back. I was told by the social worker that they are able to assist in future visits if needed.... on a case by case basis. Hope this helps. Fran Fran A Bulone Mom to ph 5 yrs old Waxhaw, NC Owner & Moderator Group Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2005 Report Share Posted February 23, 2005 thanks Fran We are looking into the alberta government paying for Kiara to go.! You are such a world of knowledge Re: Fran Yes... I paid for airfare... the first visit.... and Children's Inn was free.... and WONDERFUL.... you stay two nights... get there the day before.... check in and relax... for a busy morning... we began at 7:00am.... but luckily... we were done by noon.... and off to lunch and then to the game room at the Inn! We stayed not knowing the day would end so early... we had heard some visits last longer having to wait for the docs or the lab etc... I LUCKED out. I am told once accepted IF you need to go back... the social worker can assist with airfares. But this study does not always require our kids to go back unless genetic mutations are found or if the clinical presentation of the specific child leaves Kastner to believe there is more he may help with or if he thinks the child may still have one of the genetic disorders but no mutation is found. Some of the others here may help with the follow ups since we do have children here who have been diagnosed with the other fever disorders and do go back. I was told by the social worker that they are able to assist in future visits if needed.... on a case by case basis. Hope this helps. Fran Fran A Bulone Mom to ph 5 yrs old Waxhaw, NC Owner & Moderator Group Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2005 Report Share Posted November 30, 2005 You and ph are always in my heart and prayers! At least you know now and can move forward understanding the impacts. Let me know if you need anything. Carol Kurtz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2006 Report Share Posted March 26, 2006 Hi Sacora, NIH is wonderful... the Children's Inn is wonderful too.... Nothing to worry about at all! Dr. Louie is the fellow who Tammy met with. He is a nice man. You will also see one of the research attendings after Louie does your initial consultation. We had another doc do our initial eval. She was really nice too... a fellow too. (A fellow is a doctor who completed their residency in their specialty but chooses to FURTHER their specialty by working in a program such as NIH where they really become more and more knowledgeable... after 2 yrs of fellowship they become attending physcians in private practice or work as staff physcians at large institutions such as NIH) We met Tammy and another woman from the NOMID group, Kathe. We had a great time together meeting in the dining area at the INN each night. We also met up a couple of times at the NIH in the pediatric clinic or at lunch. I was Blessed meeting other parents of kids with other genetic disorders.... too. Just a great place where people really empathize with you because we are all walking similar paths. Tammy posted a note... a couple of days before we got home... letting everyone know we had met. Tammy is a sweetheart as is her little boy Clay! Handsome little guy too. She was seen for her son's HIDS mutations and did not need to stay as long as we did. I can say even when ph had to go under anesthesia the nurses and doctors in the surgery area were wonderful. As a seasoned retired Operating Room Nurse, I was confident in their services.... The anesthesia doc allowed me into the OR with ph and then he let me hold his head with the mask over his face... to keep him calm. He allowed me to stay there holding his head until he fell asleep with the gas. They did not stick him for any blood or for the IV until he was asleep. I requested that since I knew it would be less traumatic for ph... and I knew it can be done that way!! ph was under anesthesia for about 3 hrs... I went back to the INN.... Most parents stayed at NIH but I knew it was close by and it was out of my hands... so I decided to go over to the INN just across the street and wait for the call from the nurses .... I was called about 15 minutes before he came into Recovery... and the Recovery Nurses let me in immediately.... Once he was awake we went down to OP surgery to await discharge. The little man woke up starving... NO nausea or vomiting!! He ate an entire cheeseburger.... and fries.... had an apple and drank water and grape juice. We left the NIH at 2:00 and went over to the Inn. That night the INN had a dinner at the Clarion?? Hotel for families. We signed up to go.... It was nice. The Hotel sponsers a monthly dinner for the families at the Inn for the past 5 yrs or so!! Check to see if they have anything going on while there. The following night they had a bus trip to the shore.... with shopping etc. We skipped that because Thursday was our really exhausting day. We ran from appointment to appointment from 9:00am until 6:00pm. The families we met and chatted with nightly really wanted us to go but we were tired. Oh... the Metro Rail is awesome... We traveled into DC on Tuesday. EASY travel... easy switching trains etc.... Fun stuff to do to lesses the stressful trip!! Lots of Playstations at the Inn... Computer Room for Kids... Three laptops in an office room for parents. Crafts to do at night etc... Never boring at the Inn!! Hope this all calms you down. Fran Fran A Bulone Mom to ph 6 yrs old Waxhaw, NC Owner & Moderator Group Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2006 Report Share Posted March 26, 2006 Hello Thanks for the information, it still is scary its a long way from home. What if the kids are sick when you get to the NIH?Were would they have the family go? I dont know about Nick these days and when the episodes are going to start so I am just wondering how that would work. That is very neat that you and Tammy meet, I wish I could of meet you both too.I have been so busy lately that I have not been able to read all the post so I was not sure if you two meet or not.That is great when you meet other families too and you can visit with other people in the same sitiuation it not great what the kids are going through but it is nice to other families. On things going on at the Inn were do you find out about those things? Nick has 7 appointments why we are there and I meet with Dr.Kastner and the fellows as well. So we are going to be very busy and spending most of our time at the hospital. I want to take Nick to DC but I don't know if where going to have any time but I hope so. The Inn sounds very nice, but I am very nervous and scarred. I am glad ph did well, it is so nice to hear that, my friend this week got very bad news on her son and she is one of my best friends so it has been a very tough week dealing with everything. Again thank you, your very wonderful and you do a great job. Sacora Fran Bulone <fbulone@...> wrote: Hi Sacora, NIH is wonderful... the Children's Inn is wonderful too.... Nothing to worry about at all! Dr. Louie is the fellow who Tammy met with. He is a nice man. You will also see one of the research attendings after Louie does your initial consultation. We had another doc do our initial eval. She was really nice too... a fellow too. (A fellow is a doctor who completed their residency in their specialty but chooses to FURTHER their specialty by working in a program such as NIH where they really become more and more knowledgeable... after 2 yrs of fellowship they become attending physcians in private practice or work as staff physcians at large institutions such as NIH) We met Tammy and another woman from the NOMID group, Kathe. We had a great time together meeting in the dining area at the INN each night. We also met up a couple of times at the NIH in the pediatric clinic or at lunch. I was Blessed meeting other parents of kids with other genetic disorders.... too. Just a great place where people really empathize with you because we are all walking similar paths. Tammy posted a note... a couple of days before we got home... letting everyone know we had met. Tammy is a sweetheart as is her little boy Clay! Handsome little guy too. She was seen for her son's HIDS mutations and did not need to stay as long as we did. I can say even when ph had to go under anesthesia the nurses and doctors in the surgery area were wonderful. As a seasoned retired Operating Room Nurse, I was confident in their services.... The anesthesia doc allowed me into the OR with ph and then he let me hold his head with the mask over his face... to keep him calm. He allowed me to stay there holding his head until he fell asleep with the gas. They did not stick him for any blood or for the IV until he was asleep. I requested that since I knew it would be less traumatic for ph... and I knew it can be done that way!! ph was under anesthesia for about 3 hrs... I went back to the INN.... Most parents stayed at NIH but I knew it was close by and it was out of my hands... so I decided to go over to the INN just across the street and wait for the call from the nurses .... I was called about 15 minutes before he came into Recovery... and the Recovery Nurses let me in immediately.... Once he was awake we went down to OP surgery to await discharge. The little man woke up starving... NO nausea or vomiting!! He ate an entire cheeseburger.... and fries.... had an apple and drank water and grape juice. We left the NIH at 2:00 and went over to the Inn. That night the INN had a dinner at the Clarion?? Hotel for families. We signed up to go.... It was nice. The Hotel sponsers a monthly dinner for the families at the Inn for the past 5 yrs or so!! Check to see if they have anything going on while there. The following night they had a bus trip to the shore.... with shopping etc. We skipped that because Thursday was our really exhausting day. We ran from appointment to appointment from 9:00am until 6:00pm. The families we met and chatted with nightly really wanted us to go but we were tired. Oh... the Metro Rail is awesome... We traveled into DC on Tuesday. EASY travel... easy switching trains etc.... Fun stuff to do to lesses the stressful trip!! Lots of Playstations at the Inn... Computer Room for Kids... Three laptops in an office room for parents. Crafts to do at night etc... Never boring at the Inn!! Hope this all calms you down. Fran Fran A Bulone Mom to ph 6 yrs old Waxhaw, NC Owner & Moderator Group Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2006 Report Share Posted March 27, 2006 Hello Fran I was also wondering on the vouchers I know a while back Tammy was saying she got some vouchers, how does that work on getting them, what are they for etc?? Thanks Fran Bulone <fbulone@...> wrote: Hi Sacora, NIH is wonderful... the Children's Inn is wonderful too.... Nothing to worry about at all! Dr. Louie is the fellow who Tammy met with. He is a nice man. You will also see one of the research attendings after Louie does your initial consultation. We had another doc do our initial eval. She was really nice too... a fellow too. (A fellow is a doctor who completed their residency in their specialty but chooses to FURTHER their specialty by working in a program such as NIH where they really become more and more knowledgeable... after 2 yrs of fellowship they become attending physcians in private practice or work as staff physcians at large institutions such as NIH) We met Tammy and another woman from the NOMID group, Kathe. We had a great time together meeting in the dining area at the INN each night. We also met up a couple of times at the NIH in the pediatric clinic or at lunch. I was Blessed meeting other parents of kids with other genetic disorders.... too. Just a great place where people really empathize with you because we are all walking similar paths. Tammy posted a note... a couple of days before we got home... letting everyone know we had met. Tammy is a sweetheart as is her little boy Clay! Handsome little guy too. She was seen for her son's HIDS mutations and did not need to stay as long as we did. I can say even when ph had to go under anesthesia the nurses and doctors in the surgery area were wonderful. As a seasoned retired Operating Room Nurse, I was confident in their services.... The anesthesia doc allowed me into the OR with ph and then he let me hold his head with the mask over his face... to keep him calm. He allowed me to stay there holding his head until he fell asleep with the gas. They did not stick him for any blood or for the IV until he was asleep. I requested that since I knew it would be less traumatic for ph... and I knew it can be done that way!! ph was under anesthesia for about 3 hrs... I went back to the INN.... Most parents stayed at NIH but I knew it was close by and it was out of my hands... so I decided to go over to the INN just across the street and wait for the call from the nurses .... I was called about 15 minutes before he came into Recovery... and the Recovery Nurses let me in immediately.... Once he was awake we went down to OP surgery to await discharge. The little man woke up starving... NO nausea or vomiting!! He ate an entire cheeseburger.... and fries.... had an apple and drank water and grape juice. We left the NIH at 2:00 and went over to the Inn. That night the INN had a dinner at the Clarion?? Hotel for families. We signed up to go.... It was nice. The Hotel sponsers a monthly dinner for the families at the Inn for the past 5 yrs or so!! Check to see if they have anything going on while there. The following night they had a bus trip to the shore.... with shopping etc. We skipped that because Thursday was our really exhausting day. We ran from appointment to appointment from 9:00am until 6:00pm. The families we met and chatted with nightly really wanted us to go but we were tired. Oh... the Metro Rail is awesome... We traveled into DC on Tuesday. EASY travel... easy switching trains etc.... Fun stuff to do to lesses the stressful trip!! Lots of Playstations at the Inn... Computer Room for Kids... Three laptops in an office room for parents. Crafts to do at night etc... Never boring at the Inn!! Hope this all calms you down. Fran Fran A Bulone Mom to ph 6 yrs old Waxhaw, NC Owner & Moderator Group Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2006 Report Share Posted March 27, 2006 HI Sacora.. the study does not give food vouchers.. i emailed nikki about it vanessa RE: Fran Hello Fran I was also wondering on the vouchers I know a while back Tammy was saying she got some vouchers, how does that work on getting them, what are they for etc?? Thanks Fran Bulone <fbulone@...> wrote: Hi Sacora, NIH is wonderful... the Children's Inn is wonderful too.... Nothing to worry about at all! Dr. Louie is the fellow who Tammy met with. He is a nice man. You will also see one of the research attendings after Louie does your initial consultation. We had another doc do our initial eval. She was really nice too... a fellow too. (A fellow is a doctor who completed their residency in their specialty but chooses to FURTHER their specialty by working in a program such as NIH where they really become more and more knowledgeable... after 2 yrs of fellowship they become attending physcians in private practice or work as staff physcians at large institutions such as NIH) We met Tammy and another woman from the NOMID group, Kathe. We had a great time together meeting in the dining area at the INN each night. We also met up a couple of times at the NIH in the pediatric clinic or at lunch. I was Blessed meeting other parents of kids with other genetic disorders.... too. Just a great place where people really empathize with you because we are all walking similar paths. Tammy posted a note... a couple of days before we got home... letting everyone know we had met. Tammy is a sweetheart as is her little boy Clay! Handsome little guy too. She was seen for her son's HIDS mutations and did not need to stay as long as we did. I can say even when ph had to go under anesthesia the nurses and doctors in the surgery area were wonderful. As a seasoned retired Operating Room Nurse, I was confident in their services.... The anesthesia doc allowed me into the OR with ph and then he let me hold his head with the mask over his face... to keep him calm. He allowed me to stay there holding his head until he fell asleep with the gas. They did not stick him for any blood or for the IV until he was asleep. I requested that since I knew it would be less traumatic for ph... and I knew it can be done that way!! ph was under anesthesia for about 3 hrs... I went back to the INN.... Most parents stayed at NIH but I knew it was close by and it was out of my hands... so I decided to go over to the INN just across the street and wait for the call from the nurses .... I was called about 15 minutes before he came into Recovery... and the Recovery Nurses let me in immediately.... Once he was awake we went down to OP surgery to await discharge. The little man woke up starving... NO nausea or vomiting!! He ate an entire cheeseburger.... and fries.... had an apple and drank water and grape juice. We left the NIH at 2:00 and went over to the Inn. That night the INN had a dinner at the Clarion?? Hotel for families. We signed up to go.... It was nice. The Hotel sponsers a monthly dinner for the families at the Inn for the past 5 yrs or so!! Check to see if they have anything going on while there. The following night they had a bus trip to the shore.... with shopping etc. We skipped that because Thursday was our really exhausting day. We ran from appointment to appointment from 9:00am until 6:00pm. The families we met and chatted with nightly really wanted us to go but we were tired. Oh... the Metro Rail is awesome... We traveled into DC on Tuesday. EASY travel... easy switching trains etc.... Fun stuff to do to lesses the stressful trip!! Lots of Playstations at the Inn... Computer Room for Kids... Three laptops in an office room for parents. Crafts to do at night etc... Never boring at the Inn!! Hope this all calms you down. Fran Fran A Bulone Mom to ph 6 yrs old Waxhaw, NC Owner & Moderator Group Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2006 Report Share Posted March 27, 2006 There are no vouchers for periodic fever study. Depends on the specific study you are under. Fran Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2006 Report Share Posted April 28, 2006 I'm so glad I checked these messages today! I've been so busy recently that I haven't been keeping up. As it turns out, Connor's hyper IgM ISN'T x-linked, but autosomal recessive. How fun is that? DH and I joke (in our moments when we can see the humor in this) that we obviously were meant for each other if we were both carrying around these lousy genes! We aren't considering a BMT--Connor's health, while not great, is very manageable. He has been getting IVIG for two years now and he usually only develops infections needing antibiotics about every six or eight weeks in the winter and less often in the summer. And they aren't scary infections needing hospitalization and all kinds of steroids and breathing treatments, either--usually just plain old ear infections or sinus infections that clear up with one course of antibiotics. As he gets older and around fewer sick kids, I imagine things will get even better. The other thing that makes me seriously hesitate about a BMT is just how Connor would handle it--he's autistic and essentially non-verbal. I really can't imagine putting him through the process when he's not able to understand what it is meant to help or that pain now means a better future. He can't even understand that he needs to wait to have a cookie--he lives only in the present. I'll have to go back and read your posts on this issue, but I'm curious about why you decided ultimately to try the BMT? We have a seven year old daughter who is healthy (aside from that pesky peanut allergy), but haven't checked to see if she could be a donor. That's so wonderful that your daughter could and would donate her bone marrow for her brothers! > > Hi, ~ > > I ran across your post when I did a search for Hyper IgM. I also have > 2 boys diagnosed w/ XHIM back in 2000. We did a BMT last year and > things are going well. Is your son's the x-linked type? How is he? Are > you considering a BMT? > > Wanted to connect w/ another HIM mom, > ~ Tatem > Mom of Kaitlyn,13 (healthy donor for brothers' double BMT) > ,10 (XHIM, 1 yr. post BMT @ Duke) > , 6 (XHIM, 1 yr. post BMT @ Duke) > www.caringbridge.org/va/tatem > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2006 Report Share Posted November 30, 2006 http://www.enbrel.com/index.jsp?f=7 , The link is to the enbrel site. The info below is from the site. Enbrel is a wonderful drug that does have some major side effects especially with increasing infection rate and increase in malignancy rates... Only you and the doctors can decide if the benefits outweigh the side effects. Everything is on the internet now from the medication companies... make sure you read the patient information and the prescribing information. Enbrel also offers a service with trained registered nurses who you can call and discuss issues with while on the medication... As for comparing to Prednisone there is NO comparrison... you can compare side effects yes, but the medications are TOTALLY different. One masks disease and works as an anti-inflammatore(prednisone) while the other Enbrel is a TNF med. ENBREL is a genetically engineered soluble tumor necrosis factor (TNF) receptor that supplements the body's regulatory process by inhibiting TNF. ENBREL a.. Mimics the inhibitory effects of naturally occurring TNF receptors b.. Helps restore the body's natural balance between TNF and soluble TNF receptors c.. Has not been shown to induce neutralizing antibodies d.. Does not lyse cells in vitro in the presence or absence of complement Immunizations need to be brought up to date with Enbrel PRIOR to administering the medication. Live vaccines should not be given when on Enbrel. If exposed to Chicken Pox you should stop temporarily. In general, the adverse events in pediatric patients were similar in frequency and type as those seen in adult patients (see WARNINGS and other sections under ADVERSE REACTIONS in the ENBREL Prescribing Information). Severe adverse reactions reported in 69 JRA patients ages 4 to 17 years included varicella (see also PRECAUTIONS, Immunizations in the ENBREL Prescribing Information), gastroenteritis, depression/personality disorder, cutaneous ulcer, esophagitis/gastritis, group A streptococcal septic shock, type I diabetes mellitus, and soft-tissue and postoperative wound infection.1 Forty-three of 69 (62%) children with JRA experienced an infection while receiving ENBREL during 3 months of study (part 1, open-label), and the frequency and severity of infections were similar in 58 patients completing 12 months of open-label extension therapy. The types of infections reported in JRA patients were generally mild and consistent with those commonly seen in outpatient pediatric populations. Two JRA patients developed varicella infection and signs and symptoms of aseptic meningitis, which resolved without sequelae.1 The following adverse events were reported more commonly in 69 JRA patients receiving 3 months of ENBREL compared to the 349 adult RA patients in placebo-controlled trials. These included headache (19% of patients, 1.7 events per patient-year), nausea (9%, 1.0 event per patient-year), abdominal pain (19%, 0.74 event per patient-year), and vomiting (13%, 0.74 event per patient-year).1 a.. Become familiar with the support available through Enliven Services. When they leave your office, patients beginning therapy with ENBREL are not alone. A wide variety of free support is available through Enliven Services, including access to registered nurses toll-free at 1-888-4ENBREL (1-888-436-2735), 8 am to 11 pm Eastern time, 7 days a week Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2006 Report Share Posted December 1, 2006 Now fran Would you use this if there was no genetic diagnosis? Re: fran http://www.enbrel.com/index.jsp?f=7 , The link is to the enbrel site. The info below is from the site. Enbrel is a wonderful drug that does have some major side effects especially with increasing infection rate and increase in malignancy rates... Only you and the doctors can decide if the benefits outweigh the side effects. Everything is on the internet now from the medication companies... make sure you read the patient information and the prescribing information. Enbrel also offers a service with trained registered nurses who you can call and discuss issues with while on the medication... As for comparing to Prednisone there is NO comparrison... you can compare side effects yes, but the medications are TOTALLY different. One masks disease and works as an anti-inflammatore(prednisone) while the other Enbrel is a TNF med. ENBREL is a genetically engineered soluble tumor necrosis factor (TNF) receptor that supplements the body's regulatory process by inhibiting TNF. ENBREL a.. Mimics the inhibitory effects of naturally occurring TNF receptors b.. Helps restore the body's natural balance between TNF and soluble TNF receptors c.. Has not been shown to induce neutralizing antibodies d.. Does not lyse cells in vitro in the presence or absence of complement Immunizations need to be brought up to date with Enbrel PRIOR to administering the medication. Live vaccines should not be given when on Enbrel. If exposed to Chicken Pox you should stop temporarily. In general, the adverse events in pediatric patients were similar in frequency and type as those seen in adult patients (see WARNINGS and other sections under ADVERSE REACTIONS in the ENBREL Prescribing Information). Severe adverse reactions reported in 69 JRA patients ages 4 to 17 years included varicella (see also PRECAUTIONS, Immunizations in the ENBREL Prescribing Information), gastroenteritis, depression/personality disorder, cutaneous ulcer, esophagitis/gastritis, group A streptococcal septic shock, type I diabetes mellitus, and soft-tissue and postoperative wound infection.1 Forty-three of 69 (62%) children with JRA experienced an infection while receiving ENBREL during 3 months of study (part 1, open-label), and the frequency and severity of infections were similar in 58 patients completing 12 months of open-label extension therapy. The types of infections reported in JRA patients were generally mild and consistent with those commonly seen in outpatient pediatric populations. Two JRA patients developed varicella infection and signs and symptoms of aseptic meningitis, which resolved without sequelae.1 The following adverse events were reported more commonly in 69 JRA patients receiving 3 months of ENBREL compared to the 349 adult RA patients in placebo-controlled trials. These included headache (19% of patients, 1.7 events per patient-year), nausea (9%, 1.0 event per patient-year), abdominal pain (19%, 0.74 event per patient-year), and vomiting (13%, 0.74 event per patient-year).1 a.. Become familiar with the support available through Enliven Services. When they leave your office, patients beginning therapy with ENBREL are not alone. A wide variety of free support is available through Enliven Services, including access to registered nurses toll-free at 1-888-4ENBREL (1-888-436-2735), 8 am to 11 pm Eastern time, 7 days a week Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2006 Report Share Posted December 1, 2006 , You as her Mom can evaluate the benefits and risks! I only know ph and his symptoms. Some of the children are worse than others... just depends. If it were ph years ago when his fevers always went to 107 and higher... and he had severe abdominal issues... and joint pain to both knees... I may have opted to use it.. You know your little girl and you see her when she has her events.... ONLY you can decide. It really has NOTHING to do with genetics. It has more to do with clinical presentation and how " sick " she is.... Think about it... and you will be directed to the correct decision. I cannot advise... I have never seen your child normal and when ill.... I am sorry if this is no help... All I can do is educate you with the information from the company that produces Enbrel... and then you need to make an informed decision. God Bless Fran Fran Bulone RN Mom to ph 7yr CIAS1 mutation 11/05; Dyspraxia 11/06 Waxhaw NC / Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2006 Report Share Posted December 1, 2006 Hello, Breana was on Enbrel for over one year. She has no genetic DX. The support we got from the company was wonderful....24 nursing hotline etc. It worked well on her fevers and I feel her quality of life greatly improved while on it. The important thing is that your ped totally understands Enbrel. No live vaccines while on it. I gave our ped the insert from the box plus she researched it online. Breana was removed from Enbrel in June and has been sliding down hill since. They took her off to make sure Enbrel was not causing some symptoms she was having. ENBREL WAS NOT THE CAUSE!!!!!!!!!!!! Because they are still here !!! My family really feels strongly that Enbrel was a good thing for Breana. Good luck Re: fran http://www.enbrel.com/index.jsp?f=7 , The link is to the enbrel site. The info below is from the site. Enbrel is a wonderful drug that does have some major side effects especially with increasing infection rate and increase in malignancy rates... Only you and the doctors can decide if the benefits outweigh the side effects. Everything is on the internet now from the medication companies... make sure you read the patient information and the prescribing information. Enbrel also offers a service with trained registered nurses who you can call and discuss issues with while on the medication... As for comparing to Prednisone there is NO comparrison... you can compare side effects yes, but the medications are TOTALLY different. One masks disease and works as an anti-inflammatore(prednisone) while the other Enbrel is a TNF med. ENBREL is a genetically engineered soluble tumor necrosis factor (TNF) receptor that supplements the body's regulatory process by inhibiting TNF. ENBREL a.. Mimics the inhibitory effects of naturally occurring TNF receptors b.. Helps restore the body's natural balance between TNF and soluble TNF receptors c.. Has not been shown to induce neutralizing antibodies d.. Does not lyse cells in vitro in the presence or absence of complement Immunizations need to be brought up to date with Enbrel PRIOR to administering the medication. Live vaccines should not be given when on Enbrel. If exposed to Chicken Pox you should stop temporarily. In general, the adverse events in pediatric patients were similar in frequency and type as those seen in adult patients (see WARNINGS and other sections under ADVERSE REACTIONS in the ENBREL Prescribing Information). Severe adverse reactions reported in 69 JRA patients ages 4 to 17 years included varicella (see also PRECAUTIONS, Immunizations in the ENBREL Prescribing Information), gastroenteritis, depression/personality disorder, cutaneous ulcer, esophagitis/gastritis, group A streptococcal septic shock, type I diabetes mellitus, and soft-tissue and postoperative wound infection.1 Forty-three of 69 (62%) children with JRA experienced an infection while receiving ENBREL during 3 months of study (part 1, open-label), and the frequency and severity of infections were similar in 58 patients completing 12 months of open-label extension therapy. The types of infections reported in JRA patients were generally mild and consistent with those commonly seen in outpatient pediatric populations. Two JRA patients developed varicella infection and signs and symptoms of aseptic meningitis, which resolved without sequelae.1 The following adverse events were reported more commonly in 69 JRA patients receiving 3 months of ENBREL compared to the 349 adult RA patients in placebo-controlled trials. These included headache (19% of patients, 1.7 events per patient-year), nausea (9%, 1.0 event per patient-year), abdominal pain (19%, 0.74 event per patient-year), and vomiting (13%, 0.74 event per patient-year).1 a.. Become familiar with the support available through Enliven Services. When they leave your office, patients beginning therapy with ENBREL are not alone. A wide variety of free support is available through Enliven Services, including access to registered nurses toll-free at 1-888-4ENBREL (1-888-436-2735), 8 am to 11 pm Eastern time, 7 days a week Quote Link to comment Share on other sites More sharing options...
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