Guest guest Posted July 5, 2001 Report Share Posted July 5, 2001 Bev, and everyone no, brandon is not doing well . today the dr called and after seeing him today and how labored his breathing is now, she was ordering blood gases to be tested, his co2 level is above 40% in which a child his age/weight/height should only be 15-20% . so the tranfer in his lungs are not properly working, and that is another reason his breathing is like this. his lungs are in worse shape than before , when we went to st louis. she told us to get the ball rolling for transplant. my husband made some calls today, north carolina and pittsburgh.(i think thats all) before when we were looking into it, we felt it would be a few years down the road, well it will be sooner . with brandon not doing his treatments as he should, thats not what is causing this. its the whole big picture. we have no idea what will happen tomorrow. dr said he will be in hospital for 3 weeks now. 7/21/01 long way away. i have missed so much time at work, but they say if i need the time i can go. thanks everyone. chris On Wed, 4 Jul 2001 23:14:52 -0400, cfparents wrote: > After reading this second post, I realized isn't doing as well as > may be, so will be thinking about him and hope this will work well for him > as he starts repair:) and complies with his routine that's necessary to > stay well. Best of all to you all, > LOVE & HUGS, grandmomBEV > > brandon update > > > > Hello, > > well talked with the dr and they say he is getting better slowly but he is > still on oxygen, 3 litres but he can get off of it if he feels ok. he gets > off for about 20 minutes and then back on for an hour or so. can't handle > being off of it. > > his dr came back from vacation and he got an ear full from her. > he finally said he has learned his lesson. he will do his treatment as he > is suppose to do. he said he likes to be able to breath and did not like > his chest hurting like that. > > finally he is getting it out of his head he can't slack on doing treatments. > i guess mom and dad telling him wasn't good enough. almost killing himself > did it though. > > but he say he's learned, after 1 or so of us telling him. i guess we will > see after he comes home and in his normal routine. > > he has to learn on his own, we can't be right next to him forever even > though we try we can't be. and he is old enough to now better and wise > enough to now better but that " normal " kid wants out. > that " normal " kid better go away. > > thanks torsten, i have so many things going on and i have been making so > many mistakes. > > on monday they will do pft's and we will find out if his lungs are in worse > shape or if did any damage. hope they are ok. > he won't be home until the 12th. > > thanks everyone. > > chris > mom of 3 > brandon 12 yrs w cf > > > > > > _______________________________________________________ > Send a cool gift with your E-Card > http://www.bluemountain.com/giftcenter/ > > > > > PLEASE do not post religious emails to the list. > > > ------------------------------------------- > > > The opinions and information exchanged on this list should > IN NO WAY > be construed as medical advice. > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. > > -------------------------------------------------- > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2001 Report Share Posted July 5, 2001 Bev, and everyone no, brandon is not doing well . today the dr called and after seeing him today and how labored his breathing is now, she was ordering blood gases to be tested, his co2 level is above 40% in which a child his age/weight/height should only be 15-20% . so the tranfer in his lungs are not properly working, and that is another reason his breathing is like this. his lungs are in worse shape than before , when we went to st louis. she told us to get the ball rolling for transplant. my husband made some calls today, north carolina and pittsburgh.(i think thats all) before when we were looking into it, we felt it would be a few years down the road, well it will be sooner . with brandon not doing his treatments as he should, thats not what is causing this. its the whole big picture. we have no idea what will happen tomorrow. dr said he will be in hospital for 3 weeks now. 7/21/01 long way away. i have missed so much time at work, but they say if i need the time i can go. thanks everyone. chris On Wed, 4 Jul 2001 23:14:52 -0400, cfparents wrote: > After reading this second post, I realized isn't doing as well as > may be, so will be thinking about him and hope this will work well for him > as he starts repair:) and complies with his routine that's necessary to > stay well. Best of all to you all, > LOVE & HUGS, grandmomBEV > > brandon update > > > > Hello, > > well talked with the dr and they say he is getting better slowly but he is > still on oxygen, 3 litres but he can get off of it if he feels ok. he gets > off for about 20 minutes and then back on for an hour or so. can't handle > being off of it. > > his dr came back from vacation and he got an ear full from her. > he finally said he has learned his lesson. he will do his treatment as he > is suppose to do. he said he likes to be able to breath and did not like > his chest hurting like that. > > finally he is getting it out of his head he can't slack on doing treatments. > i guess mom and dad telling him wasn't good enough. almost killing himself > did it though. > > but he say he's learned, after 1 or so of us telling him. i guess we will > see after he comes home and in his normal routine. > > he has to learn on his own, we can't be right next to him forever even > though we try we can't be. and he is old enough to now better and wise > enough to now better but that " normal " kid wants out. > that " normal " kid better go away. > > thanks torsten, i have so many things going on and i have been making so > many mistakes. > > on monday they will do pft's and we will find out if his lungs are in worse > shape or if did any damage. hope they are ok. > he won't be home until the 12th. > > thanks everyone. > > chris > mom of 3 > brandon 12 yrs w cf > > > > > > _______________________________________________________ > Send a cool gift with your E-Card > http://www.bluemountain.com/giftcenter/ > > > > > PLEASE do not post religious emails to the list. > > > ------------------------------------------- > > > The opinions and information exchanged on this list should > IN NO WAY > be construed as medical advice. > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. > > -------------------------------------------------- > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2001 Report Share Posted July 5, 2001 I am so sorry to hear this.It is sooooo hard to see your precious little one soooo sick and not be able to " make it all better " ....When you were mentioning TX ctrs. I know your trying to be the closet , etc., BUT Al -Birmingham has a great one too. In fact Florida has several. The One in Gainesville at Shands Hospital is excellent & has a good record too. Many of my friends have had theirs at that one. Also in AL. several on this list had their TX in AL. Burroughs, Summer Katz, & more. The docs are getting very capable and used to doing this surgery now and they move about & teach each other as well. I think you can possibly be listed at two places --check that out. I wasn't aware of that and someone mentioned that to me at a meeting. I hadn't heard that before..at least not listed at the same time ...........But that sure would up his waiting time. Check It out.. i have a booklet that was used for patients in San Diego preparing for TX. what happens, what meds, etc. If you would like , I will send one to you . But I need your mailing address. Love & Hugs, GrandmomBEV xoxoxoxoxoxox brandon update > > > > Hello, > > well talked with the dr and they say he is getting better slowly but he is > still on oxygen, 3 litres but he can get off of it if he feels ok. he gets > off for about 20 minutes and then back on for an hour or so. can't handle > being off of it. > > his dr came back from vacation and he got an ear full from her. > he finally said he has learned his lesson. he will do his treatment as he > is suppose to do. he said he likes to be able to breath and did not like > his chest hurting like that. > > finally he is getting it out of his head he can't slack on doing treatments. > i guess mom and dad telling him wasn't good enough. almost killing himself > did it though. > > but he say he's learned, after 1 or so of us telling him. i guess we will > see after he comes home and in his normal routine. > > he has to learn on his own, we can't be right next to him forever even > though we try we can't be. and he is old enough to now better and wise > enough to now better but that " normal " kid wants out. > that " normal " kid better go away. > > thanks torsten, i have so many things going on and i have been making so > many mistakes. > > on monday they will do pft's and we will find out if his lungs are in worse > shape or if did any damage. hope they are ok. > he won't be home until the 12th. > > thanks everyone. > > chris > mom of 3 > brandon 12 yrs w cf > > > > > > _______________________________________________________ > Send a cool gift with your E-Card > http://www.bluemountain.com/giftcenter/ > > > > > PLEASE do not post religious emails to the list. > > > ------------------------------------------- > > > The opinions and information exchanged on this list should > IN NO WAY > be construed as medical advice. > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. > > -------------------------------------------------- > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2001 Report Share Posted July 5, 2001 I am so sorry to hear this.It is sooooo hard to see your precious little one soooo sick and not be able to " make it all better " ....When you were mentioning TX ctrs. I know your trying to be the closet , etc., BUT Al -Birmingham has a great one too. In fact Florida has several. The One in Gainesville at Shands Hospital is excellent & has a good record too. Many of my friends have had theirs at that one. Also in AL. several on this list had their TX in AL. Burroughs, Summer Katz, & more. The docs are getting very capable and used to doing this surgery now and they move about & teach each other as well. I think you can possibly be listed at two places --check that out. I wasn't aware of that and someone mentioned that to me at a meeting. I hadn't heard that before..at least not listed at the same time ...........But that sure would up his waiting time. Check It out.. i have a booklet that was used for patients in San Diego preparing for TX. what happens, what meds, etc. If you would like , I will send one to you . But I need your mailing address. Love & Hugs, GrandmomBEV xoxoxoxoxoxox brandon update > > > > Hello, > > well talked with the dr and they say he is getting better slowly but he is > still on oxygen, 3 litres but he can get off of it if he feels ok. he gets > off for about 20 minutes and then back on for an hour or so. can't handle > being off of it. > > his dr came back from vacation and he got an ear full from her. > he finally said he has learned his lesson. he will do his treatment as he > is suppose to do. he said he likes to be able to breath and did not like > his chest hurting like that. > > finally he is getting it out of his head he can't slack on doing treatments. > i guess mom and dad telling him wasn't good enough. almost killing himself > did it though. > > but he say he's learned, after 1 or so of us telling him. i guess we will > see after he comes home and in his normal routine. > > he has to learn on his own, we can't be right next to him forever even > though we try we can't be. and he is old enough to now better and wise > enough to now better but that " normal " kid wants out. > that " normal " kid better go away. > > thanks torsten, i have so many things going on and i have been making so > many mistakes. > > on monday they will do pft's and we will find out if his lungs are in worse > shape or if did any damage. hope they are ok. > he won't be home until the 12th. > > thanks everyone. > > chris > mom of 3 > brandon 12 yrs w cf > > > > > > _______________________________________________________ > Send a cool gift with your E-Card > http://www.bluemountain.com/giftcenter/ > > > > > PLEASE do not post religious emails to the list. > > > ------------------------------------------- > > > The opinions and information exchanged on this list should > IN NO WAY > be construed as medical advice. > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. > > -------------------------------------------------- > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2001 Report Share Posted July 5, 2001 I am so sorry to hear this.It is sooooo hard to see your precious little one soooo sick and not be able to " make it all better " ....When you were mentioning TX ctrs. I know your trying to be the closet , etc., BUT Al -Birmingham has a great one too. In fact Florida has several. The One in Gainesville at Shands Hospital is excellent & has a good record too. Many of my friends have had theirs at that one. Also in AL. several on this list had their TX in AL. Burroughs, Summer Katz, & more. The docs are getting very capable and used to doing this surgery now and they move about & teach each other as well. I think you can possibly be listed at two places --check that out. I wasn't aware of that and someone mentioned that to me at a meeting. I hadn't heard that before..at least not listed at the same time ...........But that sure would up his waiting time. Check It out.. i have a booklet that was used for patients in San Diego preparing for TX. what happens, what meds, etc. If you would like , I will send one to you . But I need your mailing address. Love & Hugs, GrandmomBEV xoxoxoxoxoxox brandon update > > > > Hello, > > well talked with the dr and they say he is getting better slowly but he is > still on oxygen, 3 litres but he can get off of it if he feels ok. he gets > off for about 20 minutes and then back on for an hour or so. can't handle > being off of it. > > his dr came back from vacation and he got an ear full from her. > he finally said he has learned his lesson. he will do his treatment as he > is suppose to do. he said he likes to be able to breath and did not like > his chest hurting like that. > > finally he is getting it out of his head he can't slack on doing treatments. > i guess mom and dad telling him wasn't good enough. almost killing himself > did it though. > > but he say he's learned, after 1 or so of us telling him. i guess we will > see after he comes home and in his normal routine. > > he has to learn on his own, we can't be right next to him forever even > though we try we can't be. and he is old enough to now better and wise > enough to now better but that " normal " kid wants out. > that " normal " kid better go away. > > thanks torsten, i have so many things going on and i have been making so > many mistakes. > > on monday they will do pft's and we will find out if his lungs are in worse > shape or if did any damage. hope they are ok. > he won't be home until the 12th. > > thanks everyone. > > chris > mom of 3 > brandon 12 yrs w cf > > > > > > _______________________________________________________ > Send a cool gift with your E-Card > http://www.bluemountain.com/giftcenter/ > > > > > PLEASE do not post religious emails to the list. > > > ------------------------------------------- > > > The opinions and information exchanged on this list should > IN NO WAY > be construed as medical advice. > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. > > -------------------------------------------------- > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2001 Report Share Posted July 6, 2001 Just read this one. I'm sorry 's not doing that good. Is there any chance it will improve? I don't know much about the technical side of transplants but know about 8 people that have had them and all except one is doing well. I really hope that if he does need it you'll find some terrific doctor to do it. I remember you mentioning that's it's not centralities like it is here and you were looking around. Do you have to find your own hsp. to do it or will the clinic sort that out? brandon update > > > > > > > > Hello, > > > > well talked with the dr and they say he is getting better slowly but he > is > > still on oxygen, 3 litres but he can get off of it if he feels ok. he > gets > > off for about 20 minutes and then back on for an hour or so. can't handle > > being off of it. > > > > his dr came back from vacation and he got an ear full from her. > > he finally said he has learned his lesson. he will do his treatment as > he > > is suppose to do. he said he likes to be able to breath and did not like > > his chest hurting like that. > > > > finally he is getting it out of his head he can't slack on doing > treatments. > > i guess mom and dad telling him wasn't good enough. almost killing > himself > > did it though. > > > > but he say he's learned, after 1 or so of us telling him. i guess we > will > > see after he comes home and in his normal routine. > > > > he has to learn on his own, we can't be right next to him forever even > > though we try we can't be. and he is old enough to now better and wise > > enough to now better but that " normal " kid wants out. > > that " normal " kid better go away. > > > > thanks torsten, i have so many things going on and i have been making so > > many mistakes. > > > > on monday they will do pft's and we will find out if his lungs are in > worse > > shape or if did any damage. hope they are ok. > > he won't be home until the 12th. > > > > thanks everyone. > > > > chris > > mom of 3 > > brandon 12 yrs w cf > > > > > > > > > > > > _______________________________________________________ > > Send a cool gift with your E-Card > > http://www.bluemountain.com/giftcenter/ > > > > > > > > > > PLEASE do not post religious emails to the list. > > > > > > ------------------------------------------- > > > > > > The opinions and information exchanged on this list should > > IN NO WAY > > be construed as medical advice. > > > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR > TREATMENTS. > > > > -------------------------------------------------- > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2001 Report Share Posted July 6, 2001 Just read this one. I'm sorry 's not doing that good. Is there any chance it will improve? I don't know much about the technical side of transplants but know about 8 people that have had them and all except one is doing well. I really hope that if he does need it you'll find some terrific doctor to do it. I remember you mentioning that's it's not centralities like it is here and you were looking around. Do you have to find your own hsp. to do it or will the clinic sort that out? brandon update > > > > > > > > Hello, > > > > well talked with the dr and they say he is getting better slowly but he > is > > still on oxygen, 3 litres but he can get off of it if he feels ok. he > gets > > off for about 20 minutes and then back on for an hour or so. can't handle > > being off of it. > > > > his dr came back from vacation and he got an ear full from her. > > he finally said he has learned his lesson. he will do his treatment as > he > > is suppose to do. he said he likes to be able to breath and did not like > > his chest hurting like that. > > > > finally he is getting it out of his head he can't slack on doing > treatments. > > i guess mom and dad telling him wasn't good enough. almost killing > himself > > did it though. > > > > but he say he's learned, after 1 or so of us telling him. i guess we > will > > see after he comes home and in his normal routine. > > > > he has to learn on his own, we can't be right next to him forever even > > though we try we can't be. and he is old enough to now better and wise > > enough to now better but that " normal " kid wants out. > > that " normal " kid better go away. > > > > thanks torsten, i have so many things going on and i have been making so > > many mistakes. > > > > on monday they will do pft's and we will find out if his lungs are in > worse > > shape or if did any damage. hope they are ok. > > he won't be home until the 12th. > > > > thanks everyone. > > > > chris > > mom of 3 > > brandon 12 yrs w cf > > > > > > > > > > > > _______________________________________________________ > > Send a cool gift with your E-Card > > http://www.bluemountain.com/giftcenter/ > > > > > > > > > > PLEASE do not post religious emails to the list. > > > > > > ------------------------------------------- > > > > > > The opinions and information exchanged on this list should > > IN NO WAY > > be construed as medical advice. > > > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR > TREATMENTS. > > > > -------------------------------------------------- > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2001 Report Share Posted July 6, 2001 Bev, Can you tell me what a live donor is re;cf. In Australia they do transplants in Melbourne and the person who needs it wears a beeper and they get the ambulance plane to take them there. All within a couple of hours from beeper sounding to the op. starts. I'm thankful they are so good her with transplants and I really hope gets a great doctor. update > > > bev, > when we were in st louis, we learned ALOT. saometimes i think to much > when you list and it gets close to the time, you must move there so i don't > see how you can be listed in 2 different cities. who knows? > we figured we would like to stay on the east coast side but if we must we > would go wherever. > we still have the info from st louis. > thanks for the info. > > chris > > On Thu, 5 Jul 2001 20:37:55 -0400, cfparents wrote: > > > I am so sorry to hear this.It is sooooo hard to see your precious little > one > > soooo sick and not be able to " make it all better " ....When you were > > mentioning TX ctrs. I know your trying to be the closet , etc., BUT > > Al -Birmingham has a great one too. In fact Florida has several. The One > in > > Gainesville at Shands Hospital is excellent & has a good record too. Many > of > > my friends have had theirs at that one. Also in AL. > > several on this list had their TX in AL. Burroughs, Summer Katz, & > > more. The docs are getting very capable and used to doing this surgery > now > > and they move about & teach each other as well. I think you can possibly > be > > listed at two places --check that out. I wasn't aware of that and someone > > mentioned that to me at a meeting. I hadn't heard that before..at least > not > > listed at the same time ...........But > > that sure would up his waiting time. Check It out.. i have a booklet that > > was used for patients in San Diego preparing for TX. what happens, what > > meds, etc. If you would like , I will send one to you . But I need your > > mailing address. > > > > Love & Hugs, > > GrandmomBEV > > xoxoxoxoxoxox > > > > > > > > _______________________________________________________ > Send a cool gift with your E-Card > http://www.bluemountain.com/giftcenter/ > > > > > PLEASE do not post religious emails to the list. > > > ------------------------------------------- > > > The opinions and information exchanged on this list should > IN NO WAY > be construed as medical advice. > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. > > -------------------------------------------------- > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2001 Report Share Posted July 6, 2001 yes, that was pretty much what I was saying in my post about not having to live at all the TX places all the time , or at least not until the time when you are close to top on list. A live donor is when someone else donated their organ(lobes) to the person with CF. It has been done here a great deal and VERY successful. As I mentioned in my post , I have 2 such gals in my support group. BOTH doing very nicely. Kristi had a lobe from her mum & her dad..That was 9 years ago ..She was the 4th in the world. Dr Starnes did her's in CA, USA. Sheryl had hers done 4 years ago (in Ca too), and she received lobes from her brother & her sister.All parties involved had no side effects or pull down in their health . As I mentioned in that post both gals are doing really well. . It is done here in USA quite often.With great success. Nothing is 100 % but sure beats not having one when you need it:):) happy weekend to you and great health ahead LOVE & HUGS, grandmomBEV Re: update Bev, Can you tell me what a live donor is re;cf. In Australia they do transplants in Melbourne and the person who needs it wears a beeper and they get the ambulance plane to take them there. All within a couple of hours from beeper sounding to the op. starts. I'm thankful they are so good her with transplants and I really hope gets a great doctor. update > > > bev, > when we were in st louis, we learned ALOT. saometimes i think to much > when you list and it gets close to the time, you must move there so i don't > see how you can be listed in 2 different cities. who knows? > we figured we would like to stay on the east coast side but if we must we > would go wherever. > we still have the info from st louis. > thanks for the info. > > chris > > On Thu, 5 Jul 2001 20:37:55 -0400, cfparents wrote: > > > I am so sorry to hear this.It is sooooo hard to see your precious little > one > > soooo sick and not be able to " make it all better " ....When you were > > mentioning TX ctrs. I know your trying to be the closet , etc., BUT > > Al -Birmingham has a great one too. In fact Florida has several. The One > in > > Gainesville at Shands Hospital is excellent & has a good record too. Many > of > > my friends have had theirs at that one. Also in AL. > > several on this list had their TX in AL. Burroughs, Summer Katz, & > > more. The docs are getting very capable and used to doing this surgery > now > > and they move about & teach each other as well. I think you can possibly > be > > listed at two places --check that out. I wasn't aware of that and someone > > mentioned that to me at a meeting. I hadn't heard that before..at least > not > > listed at the same time ...........But > > that sure would up his waiting time. Check It out.. i have a booklet that > > was used for patients in San Diego preparing for TX. what happens, what > > meds, etc. If you would like , I will send one to you . But I need your > > mailing address. > > > > Love & Hugs, > > GrandmomBEV > > xoxoxoxoxoxox > > > > > > > > _______________________________________________________ > Send a cool gift with your E-Card > http://www.bluemountain.com/giftcenter/ > > > > > PLEASE do not post religious emails to the list. > > > ------------------------------------------- > > > The opinions and information exchanged on this list should > IN NO WAY > be construed as medical advice. > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. > > -------------------------------------------------- > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2001 Report Share Posted July 6, 2001 I'm so sorry that isn't doing better. I know it has to be nervewracking for you. Just want you to know that I am thinking of and you and your husband. Hang in there! a :::Mom to Micah, 12wcf, and ,14,nocf:::: Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2002 Report Share Posted March 7, 2002 Hang in there Ken!!!! My kids got a rash when they got strep. It wasn't from the medicine, it was the strep coming out through the skin. If you look it up on Medline, they will tell you that sometimes a rash comes with strep throat! (Sorry about that, but maybe it is not your medicine!) Storm will probably be starting Gh soon. (We are waiting on the insurance to approve it. We were told it should take 6 to 8 weeks.) Carmen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2002 Report Share Posted March 8, 2002 Ken, I had that problem in January. I had an allergic reaction to the antibiotic which caused me to break out in hives from top to bottom. Try an oatmeal bath, it does help with the itching. Hope you solve your housing/school problems soon. Hang in there. Judith, Steve, (RSS) and (non RSS) 25 mo twins Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2002 Report Share Posted March 8, 2002 Gosh Ken when it rains it pours. I really admire you and your wife's willingness to move to another school district to benefit your son. It's a shame that we have to take such drastic measures in this great country of ours.... Good luck and keep on fighting! F. > Hi everyone, > > had a pedo endo visti yesterday and so I thought this was a good > time to give an update. > > mentioned that she had received some advice about not waiting > for the other shoe to drop. Well, for us at the moment it is raining > shoes. Anybody need some size 16 sneakers? > > First, if anyone needs to put their child in an environment where > there is a lot of talking, send them to my wife. She never stops. I > can't seem to find the off switch. Any suggestions? > > > Well back to . > > Our school troubles continue. 's private preschool has basically > said they cannot meet our sons needs and have told us to not bring him > back in September. I'm glad they told us this 2 days after we gave > them our nonrefundable deposit (We did get it back). They also said he > should repeat preschool. We have had a couple of educational > evaluations done since and both have said without hesitation, he > should be in kindergarten next year. He is at or slightly beyond where > he needs to be for kindergarten. His socialization problems come > mostly from him being an only child. > > Given that 's current preschool doesn't want him back in > September, We have decide to switch him to another private preschool > for the rest of this term and for the summer. We have already enrolled > him. went for a tour with my wife. He loved it there. While my > wife was filling out forms, he spent 45 minutes on the play ground > playing hide and seek and tag. Something he would never do at his > current school. He hardly socialized at all at his current school. > > We have also talked to a couple of educational advocates and learned > that our city has a terrible track record with all kids, especially > special needs children. They said the schools in our city have a long > history of pushing all kids on to the next grade and getting them out > of the system as fast as possible while doing as little as possible > with special needs kids. Right now the schools are having a terrible > time with kids showing up in high school who can't read and can't pass > the new mandatory standardized testing. We have been advised by at > least 2 advocates to move. So we are now getting ready to put our > house up for sale. We have narrowed our search down to 3 towns. The > best school system is in a very upscale town where the basic home sits > on 2+ acres and is about 3000 to 4000 sq ft. Basically 1/2 to 1 > million dollar homes. We think we can afford a tent there or maybe > even a double wide trailer ( if they let it cross the town line). We > maybe able to get into that school system through a backdoor. A > neighboring town is too small to have its own school system. So all > the kids there go to the schools in this very wealthy town. So we can > move there ( way out in the woods of NH ) and get our son into this > school system. We are still investigating this and considering if we > want to live in such a remote area. > > Yesterday, we took to his pedo endo. Developmentally he is right > on track. He still needs speech, and o/t and maybe p/t. Howver, he has > lost almost a pound and a half since we took him off periactin in mid > December. His height is still right on track for the 5th percentile > but his weight is falling off. So we are going to give him a month > more to see if recovers some of his weight. If not then we will start > back on the periactin for lunch. If that doesn't work then his doctor > admitted she is stumped since his height seems to be fine ( projected > adult height of 5 ft. 2 " or better). So maybe then we can start growth > hormone. > > Last, unrelated to , about amonth ago I had strep throat. I was > given some antibiotics. A week ago I developed a rash. Sunday, my > strep came back. I went to the doctor again. He confirmed, yes I have > strep again but I got the bonus version. I am having an allergic > reaction to antibiotics. He gave me a different antibiotic but it is > making my rash even worse. At this rate I should be just one big red > scab by the end of the week. Also, I am getting real tired of chicken > noodle soup and flat gingerale. > > Well, that is about all for now. If you really need to get in touch > with me, just call Davy Crocket. He was a pretty good woodsman. He > should be able to find us. -- just kidding > > Ken M > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2002 Report Share Posted March 8, 2002 Hi Carmen, Thanks for info on strep and a rash. I too looked it up and thought the same thing. I discussed it with my doctor. The rash started 14 days after I was off the antibiotics. He said that is when an allergic reaction to antibiotics shows up 14 to 21 days after stopping the medication. I had this rash over a week before my strep throat returned. Now as I take more antibiotics, the rash is getting worse. So I am pretty convinced this reash is medication induced. Good Luck with your insurance company. I hope you get a speedy approval. Ken M > Hang in there Ken!!!! My kids got a rash when they got strep. It wasn't from the medicine, it was the strep coming out through the skin. If you look it up on Medline, they will tell you that sometimes a rash comes with strep throat! (Sorry about that, but maybe it is not your medicine!) > Storm will probably be starting Gh soon. (We are waiting on the insurance to approve it. We were told it should take 6 to 8 weeks.) > Carmen > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2002 Report Share Posted March 8, 2002 Ken, I hope your rash clears up soon...and that you can get over this strep. Yikes, it's probably hard to tell which problem is the worst one to have! You sure have had quite a wild ride for the past bit, and it sounds like with the potential move it will be awhile before life settles down. is so lucky to have you & Janet as parents - relocating to get him into the best school situation possible is something many people wouldn't / couldn't do for their child. We are in the midst of Charissa's 3-year review of continuing her IEP. The meeting is going to be next Thursday. I was nervous for a bit - the school psych was reporting to me the scores of the testing & it was a bit higher than I expected. I thought she was scoring barely too high to qualify. But evidently her " other health impared " designation...and the testimony of the 4 teachers that work with her...was enough to keep her in the program. I'm not fooled though - I'm going in armed with lots of info on specific accomodations I want put in this time. No more of this " other accomodations as needed " stuff tacked on to a couple of specifics! I've found that some of the teachers need to see it detailed in the IEP or they won't make any adjustments. I know that you can relate! Chris ..................................... To get your own free faithmail account, click here to join: http://www.womenoffaith.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2002 Report Share Posted March 8, 2002 Ken, I hope your rash clears up soon...and that you can get over this strep. Yikes, it's probably hard to tell which problem is the worst one to have! You sure have had quite a wild ride for the past bit, and it sounds like with the potential move it will be awhile before life settles down. is so lucky to have you & Janet as parents - relocating to get him into the best school situation possible is something many people wouldn't / couldn't do for their child. We are in the midst of Charissa's 3-year review of continuing her IEP. The meeting is going to be next Thursday. I was nervous for a bit - the school psych was reporting to me the scores of the testing & it was a bit higher than I expected. I thought she was scoring barely too high to qualify. But evidently her " other health impared " designation...and the testimony of the 4 teachers that work with her...was enough to keep her in the program. I'm not fooled though - I'm going in armed with lots of info on specific accomodations I want put in this time. No more of this " other accomodations as needed " stuff tacked on to a couple of specifics! I've found that some of the teachers need to see it detailed in the IEP or they won't make any adjustments. I know that you can relate! Chris ..................................... To get your own free faithmail account, click here to join: http://www.womenoffaith.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2002 Report Share Posted May 9, 2002 Ken, The Pharmacia pen is sooooo easy to use!! and are both using the Pharmacia pens and it has been a breeze!! Much easier to use than the epi-pens for allergy reactions and gentler to the body. Post later and let us know about the training. This will definitely be a Kodak moment - don't forget your camera. It's amazing to look back at 's face when she received her first injection - compared to now - she can inject herself and not flinch. will eventually get to that point. Donna kmerrith wrote: Hi everyone, I have been unable to access messages for a few days. The company I work for is blocking access to " unauthorized " web sites. So I can no longer acces the list from work and fix any bouncing problems. A lot of people aat work are quite upset. They can't get their web based e-mail and a whole bunch of stuff. If it not work related it is blocked. Any way back to . He starts growth hormone on Tuesday. It was supposed to be yesterday but apparently there is no one in Maine, New Hampshire, Vermont, Massachusettes and Rhode Island who can train us in how to use the pen that comes with 's growth hormone. Some one has to drive from Ct ( 3 hours ) to Boston to train us. We have to drive an hour and a half to meet them. I find it hard to believe that no one in the Harvard Medical School, Tufts University school of medicine, Boston children's hospital, The New England Floating Hospital for Children, Deaconess, Brigham and Women's, and Lahey Clinic ( to name a few ) knows how to use the Pen 5 and train us to give his shot. Nope, not a soul according Pharmacia. I just love drug and insurance companies. We have been trying to prepare . He keeps saying " You're not listening to my words. I don't want the shots. " This is going to be fun. I'll keep you posted on how it goes. Also, I hope to get access to the list from work. Otherwise, I am going to have some late nights again. Ken M Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2002 Report Share Posted May 10, 2002 Ken, I'll be thinking of you on Tuesday. Too bad you aren't closer to Debby B. in Canada, I can just picture under the table or bed saying " NO SHOTS! " joined by Adam (who was there not that long ago) who could coax him out!!! That is amazing that nobody at any of those prestegious medical centers is authorized to teach you to use the pen! Maybe you can now be their official trainer there...it could be the start of a new career for you. It might pay well (since nobody else can do it)...hey, this could be the answer to you being able to afford that nice house in the good school district.(lol!) (Charissa's mom) > Subject: update > > Hi everyone, > > I have been unable to access messages for a few days. The > company I work for is blocking access to " unauthorized " web > sites. So I can no longer acces the list from work and fix any > bouncing problems. A lot of people aat work are quite upset. > They can't get their web based e-mail and a whole bunch of stuff. > If it not work related it is blocked. > > Any way back to . He starts growth hormone on Tuesday. It > was supposed to be yesterday but apparently there is no one in > Maine, New Hampshire, Vermont, Massachusettes and Rhode > Island who can train us in how to use the pen that comes with > 's growth hormone. Some one has to drive from Ct ( 3 > hours ) to Boston to train us. We have to drive an hour and a half > to meet them. I find it hard to believe that no one in the Harvard > Medical School, Tufts University school of medicine, Boston > children's hospital, The New England Floating Hospital for > Children, Deaconess, Brigham and Women's, and Lahey Clinic ( > to name a few ) knows how to use the Pen 5 and train us to give > his shot. Nope, not a soul according Pharmacia. I just love > drug and insurance companies. > > We have been trying to prepare . He keeps saying " You're > not listening to my words. I don't want the shots. " This is going to > be fun. > > I'll keep you posted on how it goes. Also, I hope to get access to > the list from work. Otherwise, I am going to have some late > nights again. > > Ken M > > > ..................................... To get your own free faithmail account, click here to join: http://www.womenoffaith.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2002 Report Share Posted May 10, 2002 Ken, I'll be thinking of you on Tuesday. Too bad you aren't closer to Debby B. in Canada, I can just picture under the table or bed saying " NO SHOTS! " joined by Adam (who was there not that long ago) who could coax him out!!! That is amazing that nobody at any of those prestegious medical centers is authorized to teach you to use the pen! Maybe you can now be their official trainer there...it could be the start of a new career for you. It might pay well (since nobody else can do it)...hey, this could be the answer to you being able to afford that nice house in the good school district.(lol!) (Charissa's mom) > Subject: update > > Hi everyone, > > I have been unable to access messages for a few days. The > company I work for is blocking access to " unauthorized " web > sites. So I can no longer acces the list from work and fix any > bouncing problems. A lot of people aat work are quite upset. > They can't get their web based e-mail and a whole bunch of stuff. > If it not work related it is blocked. > > Any way back to . He starts growth hormone on Tuesday. It > was supposed to be yesterday but apparently there is no one in > Maine, New Hampshire, Vermont, Massachusettes and Rhode > Island who can train us in how to use the pen that comes with > 's growth hormone. Some one has to drive from Ct ( 3 > hours ) to Boston to train us. We have to drive an hour and a half > to meet them. I find it hard to believe that no one in the Harvard > Medical School, Tufts University school of medicine, Boston > children's hospital, The New England Floating Hospital for > Children, Deaconess, Brigham and Women's, and Lahey Clinic ( > to name a few ) knows how to use the Pen 5 and train us to give > his shot. Nope, not a soul according Pharmacia. I just love > drug and insurance companies. > > We have been trying to prepare . He keeps saying " You're > not listening to my words. I don't want the shots. " This is going to > be fun. > > I'll keep you posted on how it goes. Also, I hope to get access to > the list from work. Otherwise, I am going to have some late > nights again. > > Ken M > > > ..................................... To get your own free faithmail account, click here to join: http://www.womenoffaith.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2002 Report Share Posted May 11, 2002 Oh boy, Ken, double whammy. I know how much you used to do for this listserve while at work. If you have to do it at night at home, Janet may get a wee bit PO'ed...... And now and his " I am NOT going to get shots " . I'm telling you. Shots at night while they are asleep has worked like a charm for us!!! HEE HEE. I think it has simply become easier for me, than easier for . She takes them just fine now while she is awake. But trying to add her shot in to the bedtime chaos of teeth brushing, etc. -- not for now. 2 hours later, after I have rested, is just fine for me!!!! > Hi everyone, > > I have been unable to access messages for a few days. The > company I work for is blocking access to " unauthorized " web > sites. So I can no longer acces the list from work and fix any > bouncing problems. A lot of people aat work are quite upset. > They can't get their web based e-mail and a whole bunch of stuff. > If it not work related it is blocked. > > Any way back to . He starts growth hormone on Tuesday. It > was supposed to be yesterday but apparently there is no one in > Maine, New Hampshire, Vermont, Massachusettes and Rhode > Island who can train us in how to use the pen that comes with > 's growth hormone. Some one has to drive from Ct ( 3 > hours ) to Boston to train us. We have to drive an hour and a half > to meet them. I find it hard to believe that no one in the Harvard > Medical School, Tufts University school of medicine, Boston > children's hospital, The New England Floating Hospital for > Children, Deaconess, Brigham and Women's, and Lahey Clinic ( > to name a few ) knows how to use the Pen 5 and train us to give > his shot. Nope, not a soul according Pharmacia. I just love > drug and insurance companies. > > We have been trying to prepare . He keeps saying " You're > not listening to my words. I don't want the shots. " This is going to > be fun. > > I'll keep you posted on how it goes. Also, I hope to get access to > the list from work. Otherwise, I am going to have some late > nights again. > > Ken M > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2002 Report Share Posted May 13, 2002 Ken, We got a nice little training video with our Humatrope pen that explains pretty well how to load it and use it. Actually, we didn't even watch it until this past weekend. We've been giving the shots for 2 weeks, but they're pretty straight-forward. This weekend we had to re-load the pen with a new cartridge, so we decided to watch the video first. It was pretty thorough, except for one thing. It assumes you're starting with a brand new pen, but we've already used ours for one cartridge. When we took the old one off, there was this long metal screw sticking out of the pen (which advances the " plunger " each time you give a new shot). Nowhere in the training video or the nice color brochure that we got with the pen do they explain how to retract that screw! However we finally figured it out: there's a blue release button you have to press, then you turn the dosage knob backwards until the screw is completely retracted, THEN you install the new cartridge. I'd offer to loan you the video, but it sounds like you're using a different pen. Maybe the drug company can send you one, if you still haven't had someone come to train you. As for saying he doesn't want the shots, I think you just have to be firm about it. He's still too young to make his own medical decisions. And I'll bet if he was old enough, he would opt for the shots. Just think what you would say to him if he was 18 years old, less than 5 feet tall, and he asked you why you didn't make him take the GH shots. (I'm not trying to put guilt on anyone else on this list who decides against GH, just suggesting you should be prepared to answer that question.) Anyway, good luck with starting GH... tomorrow?!!! We'll say a prayer for (and you and your wife!). - Joe PS- Gee, your company's web access policy is stricter than mine, and I work for the Navy! > Hi everyone, > > I have been unable to access messages for a few days. The > company I work for is blocking access to " unauthorized " web > sites. So I can no longer acces the list from work and fix any > bouncing problems. A lot of people aat work are quite upset. > They can't get their web based e-mail and a whole bunch of stuff. > If it not work related it is blocked. > > Any way back to . He starts growth hormone on Tuesday. It > was supposed to be yesterday but apparently there is no one in > Maine, New Hampshire, Vermont, Massachusettes and Rhode > Island who can train us in how to use the pen that comes with > 's growth hormone. Some one has to drive from Ct ( 3 > hours ) to Boston to train us. We have to drive an hour and a half > to meet them. I find it hard to believe that no one in the Harvard > Medical School, Tufts University school of medicine, Boston > children's hospital, The New England Floating Hospital for > Children, Deaconess, Brigham and Women's, and Lahey Clinic ( > to name a few ) knows how to use the Pen 5 and train us to give > his shot. Nope, not a soul according Pharmacia. I just love > drug and insurance companies. > > We have been trying to prepare . He keeps saying " You're > not listening to my words. I don't want the shots. " This is going to > be fun. > > I'll keep you posted on how it goes. Also, I hope to get access to > the list from work. Otherwise, I am going to have some late > nights again. > > Ken M > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2002 Report Share Posted May 13, 2002 Ken, I understand that does not want these shots. He is probably going to give you a big fight with it, too. I'd like to offer a few suggestions that may help... 1-Let practice on a stuffed animal. He can do this after you have given him his shot so you don't waste a precious needle. 2-Get to participate as much as you can. Let him choose the site and wipe it with the alcohol swab. Don't forget to fan it with your hand, or his, so the alcohol dries first. 3-Set up a sticker chart. Each night that gets his shot, give him a sticker to add to his chart. When he reaches a certain amount, like 7 'cause it's a week, then he can have a reward like a trip for ice cream, or watching a special movie, or some other pleasurable activity for him. You can also offer him a larger reward when he gets up to 30 because that would represent a month. This way he gets a small treat in a shorter period of time, but can reach for the longer goal and be rewarded, too. 4-Remind that YOU are the parent and make the medical decisions for him and this is what you have decided. Tell him that you have to do this for at least three months and see if he grows - to see that the medication is working. By the end of the three months, he will be so used to it, it will not be a big deal anymore. 5-If all else fails, go the sleeping route. I don't think it's a great idea to start out that way, but if after a period of time he is really resisting, that may be your only choice. Also, I believe it is okay to give the shots in the morning instead of at night. Perhaps would be more agreeable in the morning when he is not tired and cranky and wanting to go to bed. If I can think of any other ideas, I'll let you know. I'm recovering from oral surgery, so the Percocet is kicking in and I'm not thinking too clearly. Don't even ask me about the pain. It's just awful. Jodi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2002 Report Share Posted May 13, 2002 Ken, I understand that does not want these shots. He is probably going to give you a big fight with it, too. I'd like to offer a few suggestions that may help... 1-Let practice on a stuffed animal. He can do this after you have given him his shot so you don't waste a precious needle. 2-Get to participate as much as you can. Let him choose the site and wipe it with the alcohol swab. Don't forget to fan it with your hand, or his, so the alcohol dries first. 3-Set up a sticker chart. Each night that gets his shot, give him a sticker to add to his chart. When he reaches a certain amount, like 7 'cause it's a week, then he can have a reward like a trip for ice cream, or watching a special movie, or some other pleasurable activity for him. You can also offer him a larger reward when he gets up to 30 because that would represent a month. This way he gets a small treat in a shorter period of time, but can reach for the longer goal and be rewarded, too. 4-Remind that YOU are the parent and make the medical decisions for him and this is what you have decided. Tell him that you have to do this for at least three months and see if he grows - to see that the medication is working. By the end of the three months, he will be so used to it, it will not be a big deal anymore. 5-If all else fails, go the sleeping route. I don't think it's a great idea to start out that way, but if after a period of time he is really resisting, that may be your only choice. Also, I believe it is okay to give the shots in the morning instead of at night. Perhaps would be more agreeable in the morning when he is not tired and cranky and wanting to go to bed. If I can think of any other ideas, I'll let you know. I'm recovering from oral surgery, so the Percocet is kicking in and I'm not thinking too clearly. Don't even ask me about the pain. It's just awful. Jodi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2002 Report Share Posted May 13, 2002 Hi Joe, Thanks for the advice. I watched the video we got and the one thing they left out was how to remove the old cartridge. they assume you are starting with a brand new pen that is empty. Actually, does good with shots. We shall see how well he does on daily shot. This is going to be " fun " . I'll keep you posted as best I can. This internet blocking at work is a real pain. Ken M > > Hi everyone, > > > > I have been unable to access messages for a few days. The > > company I work for is blocking access to " unauthorized " web > > sites. So I can no longer acces the list from work and fix any > > bouncing problems. A lot of people aat work are quite upset. > > They can't get their web based e-mail and a whole bunch of > stuff. > > If it not work related it is blocked. > > > > Any way back to . He starts growth hormone on Tuesday. > It > > was supposed to be yesterday but apparently there is no one > in > > Maine, New Hampshire, Vermont, Massachusettes and Rhode > > Island who can train us in how to use the pen that comes with > > 's growth hormone. Some one has to drive from Ct ( 3 > > hours ) to Boston to train us. We have to drive an hour and a > half > > to meet them. I find it hard to believe that no one in the Harvard > > Medical School, Tufts University school of medicine, Boston > > children's hospital, The New England Floating Hospital for > > Children, Deaconess, Brigham and Women's, and Lahey > Clinic ( > > to name a few ) knows how to use the Pen 5 and train us to > give > > his shot. Nope, not a soul according Pharmacia. I just > love > > drug and insurance companies. > > > > We have been trying to prepare . He keeps saying " You're > > not listening to my words. I don't want the shots. " This is going > to > > be fun. > > > > I'll keep you posted on how it goes. Also, I hope to get access > to > > the list from work. Otherwise, I am going to have some late > > nights again. > > > > Ken M > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2002 Report Share Posted May 13, 2002 Hi Joe, Thanks for the advice. I watched the video we got and the one thing they left out was how to remove the old cartridge. they assume you are starting with a brand new pen that is empty. Actually, does good with shots. We shall see how well he does on daily shot. This is going to be " fun " . I'll keep you posted as best I can. This internet blocking at work is a real pain. Ken M > > Hi everyone, > > > > I have been unable to access messages for a few days. The > > company I work for is blocking access to " unauthorized " web > > sites. So I can no longer acces the list from work and fix any > > bouncing problems. A lot of people aat work are quite upset. > > They can't get their web based e-mail and a whole bunch of > stuff. > > If it not work related it is blocked. > > > > Any way back to . He starts growth hormone on Tuesday. > It > > was supposed to be yesterday but apparently there is no one > in > > Maine, New Hampshire, Vermont, Massachusettes and Rhode > > Island who can train us in how to use the pen that comes with > > 's growth hormone. Some one has to drive from Ct ( 3 > > hours ) to Boston to train us. We have to drive an hour and a > half > > to meet them. I find it hard to believe that no one in the Harvard > > Medical School, Tufts University school of medicine, Boston > > children's hospital, The New England Floating Hospital for > > Children, Deaconess, Brigham and Women's, and Lahey > Clinic ( > > to name a few ) knows how to use the Pen 5 and train us to > give > > his shot. Nope, not a soul according Pharmacia. I just > love > > drug and insurance companies. > > > > We have been trying to prepare . He keeps saying " You're > > not listening to my words. I don't want the shots. " This is going > to > > be fun. > > > > I'll keep you posted on how it goes. Also, I hope to get access > to > > the list from work. Otherwise, I am going to have some late > > nights again. > > > > Ken M > > Quote Link to comment Share on other sites More sharing options...
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