Guest guest Posted January 20, 2010 Report Share Posted January 20, 2010 Thank you for your kind words and response. After reading about this picc line and complications etc. I dont think I can go through with it....So now do I wait for a second opinion ..omg... i'm so confused. I feel lke I'm having a breakdown. From: Barbara Spaulding <barbspaulding@...> Subject: [ ] for Mom Tiffanie Lyme Treatment Date: Tuesday, January 19, 2010, 7:23 PM Tiffanie, When I was diagnosed with Lyme in 2005 and then soon found out that I had given it to my daughters through pregnancy I was devastated with guilt. Not only that but after 15 years of being misdiagnosed with CFS and fibromyalgia, etc. I felt no better finding out that I had the most controversial disease in the US! But that was 5 years ago now and I am much better and my kids have been off antibiotics for over a year now. After I picked myself off the floor I began to focus ONLY on getting us better (my husband has Lyme too) and kept the faith that we would get over this with the right treatment. We decided we weren't going to mess around but see the best doctors we could find in the country. You are so close to the number 1 pediatric Lyme specialist in the country, Dr. Ray in New Haven, CT. We traveled all the way across the country for years to see him because he was the only one we trusted with our children. It will take months for you to get your son an appt so in the meantime stick with the ID doctors or ask for other recommendations but DO have him see a lyme literate doctor in addition to an ID doctor. As others have said through experience your son will not get the correct treatment to cure him from the ID doctors because of politics that if you delve into will only make you feel worse. Hang in there, your son WILL get better with the right treatment, don't hesitate to call Dr. and get on his waiting list! Barbara ------------------------------------ Lyme Disease News continually updated from thousands of sources around the net: http://www.topix.net/health/lyme-disease MedWorm: The latest items on: Lyme Disease http://tinyurl.com/23dgy8 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2010 Report Share Posted January 20, 2010 Yes! Barbara is totally right! And you can even call their office on a weekly basis and ask if there have been cancellations. I called all the time and was able to get in really quick. Esp b/c you live close and you can get there in a short time period where others have to travel really far. Don't waste time he WILL help your child... he is awesome!Laina From: Barbara Spaulding <barbspaulding@...> Subject: [ ] for Mom Tiffanie Lyme Treatment Date: Tuesday, January 19, 2010, 7:23 PM Â Tiffanie, When I was diagnosed with Lyme in 2005 and then soon found out that I had given it to my daughters through pregnancy I was devastated with guilt. Not only that but after 15 years of being misdiagnosed with CFS and fibromyalgia, etc. I felt no better finding out that I had the most controversial disease in the US! But that was 5 years ago now and I am much better and my kids have been off antibiotics for over a year now. After I picked myself off the floor I began to focus ONLY on getting us better (my husband has Lyme too) and kept the faith that we would get over this with the right treatment. We decided we weren't going to mess around but see the best doctors we could find in the country. You are so close to the number 1 pediatric Lyme specialist in the country, Dr. Ray in New Haven, CT. We traveled all the way across the country for years to see him because he was the only one we trusted with our children. It will take months for you to get your son an appt so in the meantime stick with the ID doctors or ask for other recommendations but DO have him see a lyme literate doctor in addition to an ID doctor. As others have said through experience your son will not get the correct treatment to cure him from the ID doctors because of politics that if you delve into will only make you feel worse. Hang in there, your son WILL get better with the right treatment, don't hesitate to call Dr. and get on his waiting list! Barbara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2010 Report Share Posted January 21, 2010 Neither of my children had to have PICC lines but I know that alot of kids with Lyme do and have done well with them. I read a response from one of the Mom's to you that her son had a PICC line and she felt it did help too. She said her son was doing 'beautifully' that sounded encouraging to me  Believe me, when you put your kids on antibiotics for years at a time and sometimes more than one at a time and when you go to the pharmacist and they shake their head and say they are on too much you definitely question if what you are doing is right. I don't know if you have a strong faith but my husband and I would pray about it and felt our prayers were answered time and time again on what to do, how to proceed, and thank God every day that we are all doing so much better. There is ALOT of different info on the Internet, enough to scare the hell out of you, be careful how much you consume because it will make you feel overwhelmed and that there is no hope. In fact I learned from the beginning if I read too many stories and blogs I could make myself feel completely hopeless which helps no one, especially our children. Yes its important to research medications and side effects but don't let it scare you to the point that you dismiss something that can help your child. Kids do get better with the correct antibiotic treatment, Dr. J told us that from the beginning, and he has cured thousands of kids over the years and I know he does use PICC lines too. I'll keep you and your son in my prayers that you find your answers on what to do. Barbara From: Barbara Spaulding <barbspaulding> Subject: [ ] for Mom Tiffanie Lyme Treatment Date: Tuesday, January 19, 2010, 7:23 PM Tiffanie, When I was diagnosed with Lyme in 2005 and then soon found out that I had given it to my daughters through pregnancy I was devastated with guilt. Not only that but after 15 years of being misdiagnosed with CFS and fibromyalgia, etc. I felt no better finding out that I had the most controversial disease in the US! But that was 5 years ago now and I am much better and my kids have been off antibiotics for over a year now. After I picked myself off the floor I began to focus ONLY on getting us better (my husband has Lyme too) and kept the faith that we would get over this with the right treatment. We decided we weren't going to mess around but see the best doctors we could find in the country. You are so close to the number 1 pediatric Lyme specialist in the country, Dr. Ray in New Haven, CT. We traveled all the way across the country for years to see him because he was the only one we trusted with our children. It will take months for you to get your son an appt so in the meantime stick with the ID doctors or ask for other recommendations but DO have him see a lyme literate doctor in addition to an ID doctor. As others have said through experience your son will not get the correct treatment to cure him from the ID doctors because of politics that if you delve into will only make you feel worse. Hang in there, your son WILL get better with the right treatment, don't hesitate to call Dr. and get on his waiting list! Barbara    ------------ --------- --------- ------ Lyme Disease News continually updated from thousands of sources around the net: http://www.topix. net/health/ lyme-disease MedWorm: The latest items on: Lyme Disease http://tinyurl. com/23dgy8 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2010 Report Share Posted January 21, 2010 Tiffanie, it is understandable that you feel overwhelmed. I felt overwhelmed too when they put a picc line in my then 8 year old daughter. I remember it was a very difficult time, especially because in our case, doctors did not know for sure what she had and she looked so fragile after all the complications and 20 days in the hospital. It was very very scary, but we went through it. Doctors were good and the picc line was good until it wasn´t. We kept it clean, and it was a very practical way to administer medicine. Then my daughter had what I think was a reaction to the medicine, maybe it was 2-3 months afterwards and started complaining her arm hurt. At that point I did not hesitate and took it off. Taking it off is very very easy. The doctor switched her to oral antibiotics and mepron and after two years she is off the medicine and doing well. Hang in there. It is difficult but you will overcome. This too shall pass. I will pray that you find the right answer and treatment that feels right in your heart and takes you to a full recovery of your son soon. ________________________________ From: Tiffanie <tiffanies_towing@...> Sent: Tue, January 19, 2010 7:07:23 PM Subject: Re: [ ] for Mom Tiffanie  Thank you for your kind words and response. After reading about this picc line and complications etc. I dont think I can go through with it....So now do I wait for a second opinion ..omg... i'm so confused. I feel lke I'm having a breakdown. From: Barbara Spaulding <barbspaulding> Subject: [ ] for Mom Tiffanie Lyme Treatment Date: Tuesday, January 19, 2010, 7:23 PM Tiffanie, When I was diagnosed with Lyme in 2005 and then soon found out that I had given it to my daughters through pregnancy I was devastated with guilt. Not only that but after 15 years of being misdiagnosed with CFS and fibromyalgia, etc. I felt no better finding out that I had the most controversial disease in the US! But that was 5 years ago now and I am much better and my kids have been off antibiotics for over a year now. After I picked myself off the floor I began to focus ONLY on getting us better (my husband has Lyme too) and kept the faith that we would get over this with the right treatment. We decided we weren't going to mess around but see the best doctors we could find in the country. You are so close to the number 1 pediatric Lyme specialist in the country, Dr. Ray in New Haven, CT. We traveled all the way across the country for years to see him because he was the only one we trusted with our children. It will take months for you to get your son an appt so in the meantime stick with the ID doctors or ask for other recommendations but DO have him see a lyme literate doctor in addition to an ID doctor. As others have said through experience your son will not get the correct treatment to cure him from the ID doctors because of politics that if you delve into will only make you feel worse. Hang in there, your son WILL get better with the right treatment, don't hesitate to call Dr. and get on his waiting list! Barbara    ------------ --------- --------- ------ Lyme Disease News continually updated from thousands of sources around the net: http://www.topix. net/health/ lyme-disease MedWorm: The latest items on: Lyme Disease http://tinyurl. com/23dgy8 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2010 Report Share Posted January 21, 2010 Dear Tiffanie, I remember the fear I felt when my daughter had to go on IV therapy. We were between a Picc Line and a Port and opted for the port in her chest. She has had it replaced once and has had it in place for 5 years now. She was on IV antibiotics for over 2 years and now uses it for her IVIG treatments each month. We have had several wonderful home care nurses who helped us with all the issues of IV care. I learned to do everything myself which truly increased her independence. The IV antibiotics are what truly gave her her life back. She has been ill since about age 4 and at age 15, when she got the port, was only managing about 4-5 hours of good time a day. The rest of her day was in a chair resting or sleeping and multi symptoms. Within a week of starting the IV she had her first 8 hour day in 10 years! Now she is 19, still in treatment, and doing much better than 5 years ago. Her main issue is fatigue and some other mild on and off issues, but she has a life!! I know it was the IV that gave that too her. No parent allows an Port or a Picc line to be put in their child without fear. Fear of the unknown, fear of the complications, etc. But there is also much Hope that goes along with this, and most LLMDs do not do this lightly, but when they feel it will truly be of benefit. I knew several folks who did the daily IV therapy so was a bit more comfortable with it. I hope that you are too, and that this is a course of treatment that you can go forth with, if you are comfortable with it. Good luck to you and your child in whatever you decide. Hugs, Z Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2010 Report Share Posted January 21, 2010 Its hard but try to focus on the positive here, and there is a positive. A picc line will administer the treatment more effectively and treatment time can be shorter than orals. Hopefully he will get better faster and feel better faster. And he won't have to swallow gross tasting meds or pills he won't like. You have lots of support here and we are all on your side of this disease. You're doing just what you're suppose to do and that is to be there for your baby. Let the doctors deal with his meds now and turn your attention on making him stress free, smile and laugh. Good luck. Suzanne Sent from my iPhone On Jan 21, 2010, at 5:49 AM, <faces@...> wrote: > Dear Tiffanie, > > I remember the fear I felt when my daughter had to go on IV therapy. > We > were between a Picc Line and a Port and opted for the port in her > chest. > She has had it replaced once and has had it in place for 5 years now. > She was on IV antibiotics for over 2 years and now uses it for her > IVIG > treatments each month. We have had several wonderful home care nurses > who helped us with all the issues of IV care. I learned to do > everything > myself which truly increased her independence. > > The IV antibiotics are what truly gave her her life back. She has been > ill since about age 4 and at age 15, when she got the port, was only > managing about 4-5 hours of good time a day. The rest of her day was > in > a chair resting or sleeping and multi symptoms. Within a week of > starting the IV she had her first 8 hour day in 10 years! Now she is > 19, > still in treatment, and doing much better than 5 years ago. Her main > issue is fatigue and some other mild on and off issues, but she has a > life!! I know it was the IV that gave that too her. > > No parent allows an Port or a Picc line to be put in their child > without > fear. Fear of the unknown, fear of the complications, etc. But there > is > also much Hope that goes along with this, and most LLMDs do not do > this > lightly, but when they feel it will truly be of benefit. I knew > several > folks who did the daily IV therapy so was a bit more comfortable with > it. I hope that you are too, and that this is a course of treatment > that > you can go forth with, if you are comfortable with it. > > Good luck to you and your child in whatever you decide. > > Hugs, > > Z > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2010 Report Share Posted January 22, 2010 Did I see gross tasting pills? Flea? Sent via BlackBerry from T-Mobile Re: [ ] for Mom Tiffanie Its hard but try to focus on the positive here, and there is a positive. A picc line will administer the treatment more effectively and treatment time can be shorter than orals. Hopefully he will get better faster and feel better faster. And he won't have to swallow gross tasting meds or pills he won't like. You have lots of support here and we are all on your side of this disease. You're doing just what you're suppose to do and that is to be there for your baby. Let the doctors deal with his meds now and turn your attention on making him stress free, smile and laugh. Good luck. Suzanne Sent from my iPhone On Jan 21, 2010, at 5:49 AM, <faces@...> wrote: > Dear Tiffanie, > > I remember the fear I felt when my daughter had to go on IV therapy. > We > were between a Picc Line and a Port and opted for the port in her > chest. > She has had it replaced once and has had it in place for 5 years now. > She was on IV antibiotics for over 2 years and now uses it for her > IVIG > treatments each month. We have had several wonderful home care nurses > who helped us with all the issues of IV care. I learned to do > everything > myself which truly increased her independence. > > The IV antibiotics are what truly gave her her life back. She has been > ill since about age 4 and at age 15, when she got the port, was only > managing about 4-5 hours of good time a day. The rest of her day was > in > a chair resting or sleeping and multi symptoms. Within a week of > starting the IV she had her first 8 hour day in 10 years! Now she is > 19, > still in treatment, and doing much better than 5 years ago. Her main > issue is fatigue and some other mild on and off issues, but she has a > life!! I know it was the IV that gave that too her. > > No parent allows an Port or a Picc line to be put in their child > without > fear. Fear of the unknown, fear of the complications, etc. But there > is > also much Hope that goes along with this, and most LLMDs do not do > this > lightly, but when they feel it will truly be of benefit. I knew > several > folks who did the daily IV therapy so was a bit more comfortable with > it. I hope that you are too, and that this is a course of treatment > that > you can go forth with, if you are comfortable with it. > > Good luck to you and your child in whatever you decide. > > Hugs, > > Z > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2010 Report Share Posted January 22, 2010 Should read Flagyl not flea. Darn auto correct! Sent via BlackBerry from T-Mobile Re: [ ] for Mom Tiffanie Its hard but try to focus on the positive here, and there is a positive. A picc line will administer the treatment more effectively and treatment time can be shorter than orals. Hopefully he will get better faster and feel better faster. And he won't have to swallow gross tasting meds or pills he won't like. You have lots of support here and we are all on your side of this disease. You're doing just what you're suppose to do and that is to be there for your baby. Let the doctors deal with his meds now and turn your attention on making him stress free, smile and laugh. Good luck. Suzanne Sent from my iPhone On Jan 21, 2010, at 5:49 AM, <faces@...> wrote: > Dear Tiffanie, > > I remember the fear I felt when my daughter had to go on IV therapy. > We > were between a Picc Line and a Port and opted for the port in her > chest. > She has had it replaced once and has had it in place for 5 years now. > She was on IV antibiotics for over 2 years and now uses it for her > IVIG > treatments each month. We have had several wonderful home care nurses > who helped us with all the issues of IV care. I learned to do > everything > myself which truly increased her independence. > > The IV antibiotics are what truly gave her her life back. She has been > ill since about age 4 and at age 15, when she got the port, was only > managing about 4-5 hours of good time a day. The rest of her day was > in > a chair resting or sleeping and multi symptoms. Within a week of > starting the IV she had her first 8 hour day in 10 years! Now she is > 19, > still in treatment, and doing much better than 5 years ago. Her main > issue is fatigue and some other mild on and off issues, but she has a > life!! I know it was the IV that gave that too her. > > No parent allows an Port or a Picc line to be put in their child > without > fear. Fear of the unknown, fear of the complications, etc. But there > is > also much Hope that goes along with this, and most LLMDs do not do > this > lightly, but when they feel it will truly be of benefit. I knew > several > folks who did the daily IV therapy so was a bit more comfortable with > it. I hope that you are too, and that this is a course of treatment > that > you can go forth with, if you are comfortable with it. > > Good luck to you and your child in whatever you decide. > > Hugs, > > Z > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2010 Report Share Posted January 28, 2010 I just went to ID dr. today and was peeking at 's chart, he has Lyme meningitis ?? Why was I never told about this ? thats why she was trying to push the picc line. Why not freaking tell me before ?? So in 3 weeks we go back and may need more treatment, she did agree to go with a midline instead of picc line if need be. I cant believe this. I'm reading lyme meningitis isnt as bad as viral or bacterial. She said something about CNF test and white blood cells. what is that ? At spinal tap they said no meningitis, I'm so confused now, I was in such shock I didnt understand what she was saying. > Dear Tiffanie, > > I remember the fear I felt when my daughter had to go on IV therapy. > We > were between a Picc Line and a Port and opted for the port in her > chest. > She has had it replaced once and has had it in place for 5 years now. > She was on IV antibiotics for over 2 years and now uses it for her > IVIG > treatments each month. We have had several wonderful home care nurses > who helped us with all the issues of IV care. I learned to do > everything > myself which truly increased her independence. > > The IV antibiotics are what truly gave her her life back. She has been > ill since about age 4 and at age 15, when she got the port, was only > managing about 4-5 hours of good time a day. The rest of her day was > in > a chair resting or sleeping and multi symptoms. Within a week of > starting the IV she had her first 8 hour day in 10 years! Now she is > 19, > still in treatment, and doing much better than 5 years ago. Her main > issue is fatigue and some other mild on and off issues, but she has a > life!! I know it was the IV that gave that too her. > > No parent allows an Port or a Picc line to be put in their child > without > fear. Fear of the unknown, fear of the complications, etc. But there > is > also much Hope that goes along with this, and most LLMDs do not do > this > lightly, but when they feel it will truly be of benefit. I knew > several > folks who did the daily IV therapy so was a bit more comfortable with > it. I hope that you are too, and that this is a course of treatment > that > you can go forth with, if you are comfortable with it. > > Good luck to you and your child in whatever you decide. > > Hugs, > > Z > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2010 Report Share Posted January 29, 2010 , Why didn't you ask your doctor to explain it? Leaving you in the dark does not work very well does it? I'm not a doctor but, I think " Lyme Meningitis " just means they found the spirochetes in the spinal fluid. People get various different effects from Lymes which usually ends up in a specific Lymes diagnosis. For example, many people get Neurological Lymes, which means it is affecting their brain. But all in all it's all Lyme Disease and there are different types of spirochetes I think too but they are all spirochete bacteria. They affect everyone in their own way but they are ALL pretty much treated the same way with western medicine..... antibiotics! Unless you go the Holistic route and treat with herbs or machines or oxygen chambers or Uric acid injections or whatever it is that makes you feel better. I even know I guy that went to Mexico and had stem cell injections (didn't work, btw). The reason that site said it wasn't " as bad " is because it doesn't usually kill you right away like strep meningitis does. And Lymes is not a virus it's a bacteria. So it doesn't just go away on it's own like a virus. It can go dormant making most symptoms subside or be nonexistent. The problem with dormant spirochetes is that an illness or chemistry change can bring it out of dormancy and " reinfect " you so to speak full force. That's one reason you want to treat it asap and for as long as it takes. And that is going to be longer than a month. If it's congenital as in my case, I feel like I was born with it dormant until puberty since my symptoms raged during that time and I was never the same until after treatment 25 years later. A good book to better understand the history of the spirochete and how it derived is Biography of a Germ, by Arno Karlen. It's a small book. It's interesting and you will learn a lot. Take care, Suzanne On Jan 28, 2010, at 2:12 PM, Tiffanie wrote: > I just went to ID dr. today and was peeking at 's chart, he > has Lyme meningitis ?? Why was I never told about this ? thats why > she was trying to push the picc line. Why not freaking tell me > before ?? So in 3 weeks we go back and may need more treatment, she > did agree to go with a midline instead of picc line if need be. I > cant believe this. I'm reading lyme meningitis isnt as bad as viral > or bacterial. She said something about CNF test and white blood > cells. what is that ? At spinal tap they said no meningitis, I'm so > confused now, I was in such shock I didnt understand what she was > saying. > > > > > Dear Tiffanie, > > > > I remember the fear I felt when my daughter had to go on IV therapy. > > We > > were between a Picc Line and a Port and opted for the port in her > > chest. > > She has had it replaced once and has had it in place for 5 years > now. > > She was on IV antibiotics for over 2 years and now uses it for her > > IVIG > > treatments each month. We have had several wonderful home care > nurses > > who helped us with all the issues of IV care. I learned to do > > everything > > myself which truly increased her independence. > > > > The IV antibiotics are what truly gave her her life back. She has > been > > ill since about age 4 and at age 15, when she got the port, was only > > managing about 4-5 hours of good time a day. The rest of her day was > > in > > a chair resting or sleeping and multi symptoms. Within a week of > > starting the IV she had her first 8 hour day in 10 years! Now she is > > 19, > > still in treatment, and doing much better than 5 years ago. Her main > > issue is fatigue and some other mild on and off issues, but she > has a > > life!! I know it was the IV that gave that too her. > > > > No parent allows an Port or a Picc line to be put in their child > > without > > fear. Fear of the unknown, fear of the complications, etc. But there > > is > > also much Hope that goes along with this, and most LLMDs do not do > > this > > lightly, but when they feel it will truly be of benefit. I knew > > several > > folks who did the daily IV therapy so was a bit more comfortable > with > > it. I hope that you are too, and that this is a course of treatment > > that > > you can go forth with, if you are comfortable with it. > > > > Good luck to you and your child in whatever you decide. > > > > Hugs, > > > > Z > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2010 Report Share Posted January 30, 2010 I was under the impression that Lyme Meningitis referred to the type of symptom -- i.e., stiff neck, headaches, malaise, fever (much lower in Lyme than in vm). Lyme is Lyme. If you have it and have had it for more than a few weeks, it is going to end up disseminating -- in my kids, one got it in the brain and another in all the joints and neck. Then you have to kill it aggressively, as others have said. Meningitis is a scary word, but I think with Lyme it is different. Lots of articles on line about it if you google. Glad you are getting treatment for your son. If I could make a suggestion borne out of years of experience advocating for my kids out of necessity, not personality: read as much as you can about Lyme. Look at symptoms checklists and ask you son about his symptoms (a good list exists on the CALDA website, also CANLyme). Make a list of all his symptoms. Then talk to your doctor about ALL the symptoms, what they mean, how they need to be treated (for example, my daughter and I are on rifampin to get at the Lyme in our brains, plaquenil as a cyst-buster and to get into the joints, and azithromycin to boost the others and kill as they are born throughout my system.) A LLMD or an article about the different Lyme treatments should be able to give you the information you are looking for about why and what and how long. I have found that having more information from a variety of sources is comforting and puts me in a position of being able to ask the doctor proactively -- doctors (esp non Lyme doctors) half the time are kind of flying blind and you would not necessarily know that if you don't question them and ask why they are giving the treatment they are choosing. In any event, sorry you are having to go through this scary time. It can be exhausting, frustrating and terrifying all at once. You are not alone. Natasha > > > Dear Tiffanie, > > > > I remember the fear I felt when my daughter had to go on IV therapy. > > We > > were between a Picc Line and a Port and opted for the port in her > > chest. > > She has had it replaced once and has had it in place for 5 years > now. > > She was on IV antibiotics for over 2 years and now uses it for her > > IVIG > > treatments each month. We have had several wonderful home care > nurses > > who helped us with all the issues of IV care. I learned to do > > everything > > myself which truly increased her independence. > > > > The IV antibiotics are what truly gave her her life back. She has > been > > ill since about age 4 and at age 15, when she got the port, was only > > managing about 4-5 hours of good time a day. The rest of her day was > > in > > a chair resting or sleeping and multi symptoms. Within a week of > > starting the IV she had her first 8 hour day in 10 years! Now she is > > 19, > > still in treatment, and doing much better than 5 years ago. Her main > > issue is fatigue and some other mild on and off issues, but she > has a > > life!! I know it was the IV that gave that too her. > > > > No parent allows an Port or a Picc line to be put in their child > > without > > fear. Fear of the unknown, fear of the complications, etc. But there > > is > > also much Hope that goes along with this, and most LLMDs do not do > > this > > lightly, but when they feel it will truly be of benefit. I knew > > several > > folks who did the daily IV therapy so was a bit more comfortable > with > > it. I hope that you are too, and that this is a course of treatment > > that > > you can go forth with, if you are comfortable with it. > > > > Good luck to you and your child in whatever you decide. > > > > Hugs, > > > > Z > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2010 Report Share Posted January 30, 2010 I was just in such shock when she told me that its in the brain and he has meningitis, I kind of blanked out, I didnt know what to say or ask. I was in like a brain fog, > > > Dear Tiffanie, > > > > I remember the fear I felt when my daughter had to go on IV therapy. > > We > > were between a Picc Line and a Port and opted for the port in her > > chest. > > She has had it replaced once and has had it in place for 5 years > now. > > She was on IV antibiotics for over 2 years and now uses it for her > > IVIG > > treatments each month. We have had several wonderful home care > nurses > > who helped us with all the issues of IV care. I learned to do > > everything > > myself which truly increased her independence. > > > > The IV antibiotics are what truly gave her her life back. She has > been > > ill since about age 4 and at age 15, when she got the port, was only > > managing about 4-5 hours of good time a day. The rest of her day was > > in > > a chair resting or sleeping and multi symptoms. Within a week of > > starting the IV she had her first 8 hour day in 10 years! Now she is > > 19, > > still in treatment, and doing much better than 5 years ago. Her main > > issue is fatigue and some other mild on and off issues, but she > has a > > life!! I know it was the IV that gave that too her. > > > > No parent allows an Port or a Picc line to be put in their child > > without > > fear. Fear of the unknown, fear of the complications, etc. But there > > is > > also much Hope that goes along with this, and most LLMDs do not do > > this > > lightly, but when they feel it will truly be of benefit. I knew > > several > > folks who did the daily IV therapy so was a bit more comfortable > with > > it. I hope that you are too, and that this is a course of treatment > > that > > you can go forth with, if you are comfortable with it. > > > > Good luck to you and your child in whatever you decide. > > > > Hugs, > > > > Z > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2010 Report Share Posted January 30, 2010 Tiffanie ~ It may help you for the time being (until you get " settled " into this diagnosis and get some more research " under your belt " ) to take another trusted adult to dr's appointments with you. Not someone in your family who has a close relationship that may also be affected by the info, but rather someone from church, or a good friend that you can trust. Someone who is removed enough from the situation that they can question the information the dr gives you at each appoint. Someone that will write down the info the dr says, and asks questions that you may not consider because you " blank out " or are shocked. Basically, they are in background with a notepad and pen, writing down everything, but have permission from you to ask questions to clarify info, a diagnosis, or treatment plans and options. Once you get " settled " into dealing with the Lyme Disease, you may find the need to have someone accompany you to appointments lessens, or you may decide that it's quite helpful and continue having some go with you. Charlotte (Please note new email address, effective immediately) iamwhimsy@... http://whimsy.t35.com Re: [ ] for Mom Tiffanie I was just in such shock when she told me that its in the brain and he has meningitis, I kind of blanked out, I didnt know what to say or ask. I was in like a brain fog, > > > Dear Tiffanie, > > > > I remember the fear I felt when my daughter had to go on IV therapy. > > We > > were between a Picc Line and a Port and opted for the port in her > > chest. > > She has had it replaced once and has had it in place for 5 years > now. > > She was on IV antibiotics for over 2 years and now uses it for her > > IVIG > > treatments each month. We have had several wonderful home care > nurses > > who helped us with all the issues of IV care. I learned to do > > everything > > myself which truly increased her independence. > > > > The IV antibiotics are what truly gave her her life back. She has > been > > ill since about age 4 and at age 15, when she got the port, was only > > managing about 4-5 hours of good time a day. The rest of her day was > > in > > a chair resting or sleeping and multi symptoms. Within a week of > > starting the IV she had her first 8 hour day in 10 years! Now she is > > 19, > > still in treatment, and doing much better than 5 years ago. Her main > > issue is fatigue and some other mild on and off issues, but she > has a > > life!! I know it was the IV that gave that too her. > > > > No parent allows an Port or a Picc line to be put in their child > > without > > fear. Fear of the unknown, fear of the complications, etc. But there > > is > > also much Hope that goes along with this, and most LLMDs do not do > > this > > lightly, but when they feel it will truly be of benefit. I knew > > several > > folks who did the daily IV therapy so was a bit more comfortable > with > > it. I hope that you are too, and that this is a course of treatment > > that > > you can go forth with, if you are comfortable with it. > > > > Good luck to you and your child in whatever you decide. > > > > Hugs, > > > > Z > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2010 Report Share Posted January 30, 2010 We have all been there. Don't beat yourself up. We went through a day when the doctor told us our daughter had eosinophilic leukemia. Talk about not having any response! We cried for a full 24 hours before they said " oops, our bad. "  Of course, a completely rare leukemia is so much more likely than lyme, when you have 3 positive bands, but it was " No, no Lyme -- must be this rare thing. "  It is not too late to call and leave a message asking what it means that your daughter has Lyme meningitis. Most doctors will call back and give you the 30 second explanation, which is all you need to get some sense of what it means. My experience with my daughter's fatal leukemia (ha!) taught me that I had to be really with it, know more than the doctors, and write things down in our meetings so that I didn't miss anything. I still miss stuff but it helps. We finally -- after 5 years -- have a great LLMD so I feel the burden is off of me, but until then I felt like I had to basically diagnose my daughter myself. Clearly, my guess was as good as theirs! So sad but true. Until now I mean. Now, I just listen and learn. Hang in there. Natasha PS: About its being in the brain, that basically just means it mobilized away from local. Rifampin is what our very experienced LLMD uses specifically to target the lyme in the brain. We see huge progress, no more icepick headaches, lifting brain fog etc after 6 months. > > > Dear Tiffanie, > > > > I remember the fear I felt when my daughter had to go on IV therapy. > > We > > were between a Picc Line and a Port and opted for the port in her > > chest. > > She has had it replaced once and has had it in place for 5 years > now. > > She was on IV antibiotics for over 2 years and now uses it for her > > IVIG > > treatments each month. We have had several wonderful home care > nurses > > who helped us with all the issues of IV care. I learned to do > > everything > > myself which truly increased her independence. > > > > The IV antibiotics are what truly gave her her life back. She has > been > > ill since about age 4 and at age 15, when she got the port, was only > > managing about 4-5 hours of good time a day. The rest of her day was > > in > > a chair resting or sleeping and multi symptoms. Within a week of > > starting the IV she had her first 8 hour day in 10 years! Now she is > > 19, > > still in treatment, and doing much better than 5 years ago. Her main > > issue is fatigue and some other mild on and off issues, but she > has a > > life!! I know it was the IV that gave that too her. > > > > No parent allows an Port or a Picc line to be put in their child > > without > > fear. Fear of the unknown, fear of the complications, etc. But there > > is > > also much Hope that goes along with this, and most LLMDs do not do > > this > > lightly, but when they feel it will truly be of benefit. I knew > > several > > folks who did the daily IV therapy so was a bit more comfortable > with > > it. I hope that you are too, and that this is a course of treatment > > that > > you can go forth with, if you are comfortable with it. > > > > Good luck to you and your child in whatever you decide. > > > > Hugs, > > > > Z > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2010 Report Share Posted February 6, 2010 omg.. I cant even imagine how you felt. Did the eos in the blood count come back high, is that why they thought that ? 's is high too. I have an appt. at Scneider's Childrens Hospital Monday. I sent the application back to Dr. so now I wait to hear. I met a lady in walmart the other day and her son has lyme too. He's 7. He has problems with pain in his hands and the arches of his feet, he's also learning disabled. She just got approved for disbility for him. > > > Dear Tiffanie, > > > > I remember the fear I felt when my daughter had to go on IV therapy. > > We > > were between a Picc Line and a Port and opted for the port in her > > chest. > > She has had it replaced once and has had it in place for 5 years > now. > > She was on IV antibiotics for over 2 years and now uses it for her > > IVIG > > treatments each month. We have had several wonderful home care > nurses > > who helped us with all the issues of IV care. I learned to do > > everything > > myself which truly increased her independence. > > > > The IV antibiotics are what truly gave her her life back. She has > been > > ill since about age 4 and at age 15, when she got the port, was only > > managing about 4-5 hours of good time a day. The rest of her day was > > in > > a chair resting or sleeping and multi symptoms. Within a week of > > starting the IV she had her first 8 hour day in 10 years! Now she is > > 19, > > still in treatment, and doing much better than 5 years ago. Her main > > issue is fatigue and some other mild on and off issues, but she > has a > > life!! I know it was the IV that gave that too her. > > > > No parent allows an Port or a Picc line to be put in their child > > without > > fear. Fear of the unknown, fear of the complications, etc. But there > > is > > also much Hope that goes along with this, and most LLMDs do not do > > this > > lightly, but when they feel it will truly be of benefit. I knew > > several > > folks who did the daily IV therapy so was a bit more comfortable > with > > it. I hope that you are too, and that this is a course of treatment > > that > > you can go forth with, if you are comfortable with it. > > > > Good luck to you and your child in whatever you decide. > > > > Hugs, > > > > Z > > > > > > Quote Link to comment Share on other sites More sharing options...
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