Guest guest Posted January 10, 2006 Report Share Posted January 10, 2006 In a message dated 1/9/2006 6:44:01 PM Central Standard Time, nxakmo@... writes: > HI Becki. I would like to have a copy of the regimen you use for excema. > I have never heard of the " wet wrap " therapy. I have both excema and > psoriasis and would like to try this and see if it helps. I look forward to hearing > from you. You can e-mail me direct at either nxakmo@... OR > xcm_idfhelps@... > > Thanks!!!!! > > Me too, please! (mom to , age 6-1/2, dairy intolerant-related GERD -- currently has polysaccharide antibody def, previously had transient IgG, IgA, t-cell & other defs... and also to Kate, age 3!, more dairy intolerant but very healthy!) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2006 Report Share Posted January 10, 2006 In a message dated 1/9/2006 6:44:01 PM Central Standard Time, nxakmo@... writes: > HI Becki. I would like to have a copy of the regimen you use for excema. > I have never heard of the " wet wrap " therapy. I have both excema and > psoriasis and would like to try this and see if it helps. I look forward to hearing > from you. You can e-mail me direct at either nxakmo@... OR > xcm_idfhelps@... > > Thanks!!!!! > > Me too, please! (mom to , age 6-1/2, dairy intolerant-related GERD -- currently has polysaccharide antibody def, previously had transient IgG, IgA, t-cell & other defs... and also to Kate, age 3!, more dairy intolerant but very healthy!) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2006 Report Share Posted January 16, 2006 Xan, I FINALLY figured out how to send an attachment..would you still like a copy of the wet wrap regement? Sorry it took so long! Becki Becki HI Becki. I would like to have a copy of the regimen you use for excema. I have never heard of the " wet wrap " therapy. I have both excema and psoriasis and would like to try this and see if it helps. I look forward to hearing from you. You can e-mail me direct at either nxakmo@... OR xcm_idfhelps@... Thanks!!!!! Xan, Mom to , 17 & Kaitlyn, 12, CVID, Asthma, Chronic Sinusitis, and still slight Reflux Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2006 Report Share Posted February 28, 2006 , I would definitely have to say that my thought is the Neocate can't hurt. It's just expensive unfortunately! Our dr. wrote a letter of necessity saying Reagon had to have it and that it was her only means of " survival " and the insurance agreed to pay for it! I was pleased with National Jewish in some senses, but disappointed in others. Reagon has severe eczema and their " wet wrap " treatment has been a true blessing for us. That alone probably made it worth the trip for us, but we didn't get many answers immune wise. That wasn't entirely their fault though..our dr. had insisted doing IVIG the month before we went saying that it only takes 3 weeks to completely get out of their system, when I argued it took 3 months. I turned out to be right and therefore Dr. Gelfand couldn't get a " true " picture of her immune system. They want us to come back..but with 3 older children, I just haven't had the time. The nurses on their lung line are very, very nice and helpful, but I would just make it real clear your financial situation when or if you go. They did take care of everything with my insurance for me, but they also told me our part would be between $600-$700 total. I got the bill after getting home and our part was $2,500! I know there were other people there that had made financial arrangements before coming...so I'd recommend checking into all that right off the bat. I also just let them run what ever kind of tests they wanted thinking that was all part of it and not knowing that each test they ran was adding up. So part of that was my fault. It sounds like you will only need labwork done, so that should not be near as costly. We were there for 2 full weeks and had 24 hr ph probes, catscans of lungs & sinuses, skin biopsies, allergy testing, eczema treatment and numerous other things done while we were there. Dr. Gelfand is supposed to be one of the best and was a very, very nice man. He really listens to you and interacts with the children very well. Reagon is almost 5 now (birthday is in May) and is doing wonderfully. Those first 2 years were so tough and she was on mainly Neocate for 18 months, but around 2 years old she started doing better and better. I'd say by 2 1/2 or 3 she was able to eat almost anything she wanted. She still has a handful of foods she reacts to,but nothing like she used to! She is still very small and skinny for her age (10%), but healthy, happy and very, very active. You would never know she was sick by looking at her! Please feel free to keep asking questions!! Becki Reagon (4 yrs.) CVID, asthma, allergies Becki Maybe I will try the neocate. It can't hurt right? Were you happy with the docs at National Jewish. I was going to call them today and just talk to them. Maybe that would be the best place, I've heard a lot of good things. How old is Reagon now? Ana eats rice cereal, peaches, peach cobbler and sweet potat. She had reacted to carrots at eight months with blood in her stool so we stopped that, and have now tried to reintroduce it, but she hates the taste. We are working with a feeding clinic but they treat it as a behavioral problem, which I don't think it is. Thanks for the encouragement. Hopefully we'll get somewhere with this! > > > Hello all, > > > > > > Thank you for letting me join this community. Dayna directed > me > > to > > > it and I can already see it will be very helpful. I live in > > > Woodbury, MN and am mother to a one year old little joy named > > Ana. > > > She was born in Waconia, MN 10 days early, I had toxemia. She > was > > > healthy until around 11 weeks. Started then with croup. At 3 > > > months hospitilized with RSV for a week. That was followed by > 2 > > > pneumonia's. I started asking questions about this being > normal > > and > > > was told it was just bad luck. Luckily had a very good peds > doc > > who > > > humored me by checking Ana's immune system at six months. She > > came > > > back with very low IgG levels. She refered us to an allergist > who > > > said it was normal at six months. We went to a different > > > immunologist at nine months and they rechecked, her levels had > > > dropped further. Since six months she has had ongoing sinus > and > > ear > > > infections. Off of the antibiotics for less then 3-4 days > before > > it > > > comes back every time. We are now waiting for 12 month > recheck > > > results then I will push for them to do more for her. She is > not > > > growing. Has dropped from the 75% at six months for weight to > > below > > > the 10% at 12 months. Less then a pounds in the last six > months. > > > They say she has dairy allergy, though it doesn't seem like a > true > > > allergy to me, and all the allergy tests were negative. But > she > > and > > > I (she is still nursed at night) are off dairy. She loves to > read > > > books and cuddle. Very lovey little girl, my joy. I look > forward > > > to swapping ideas with everyone and can not express how > thankful I > > > am going to be for the support from people who understand. > What a > > > Godsend! Hope to talk to each of you soon. > > > > > > Fritze > > > mom to Ana Marie, my angel > > > > > > > > > > > > > > > > > > > > > This forum is open to parents and caregivers of children > diagnosed > > with a Primary Immune Deficiency. Opinions or medical advice > stated > > here are the sole responsibility of the poster and should not be > > taken as professional advice. > > > > > > To unsubscribe -unsubscribegroups (DOT) > > > To search group archives go to: > > /messages > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2006 Report Share Posted February 28, 2006 , I would definitely have to say that my thought is the Neocate can't hurt. It's just expensive unfortunately! Our dr. wrote a letter of necessity saying Reagon had to have it and that it was her only means of " survival " and the insurance agreed to pay for it! I was pleased with National Jewish in some senses, but disappointed in others. Reagon has severe eczema and their " wet wrap " treatment has been a true blessing for us. That alone probably made it worth the trip for us, but we didn't get many answers immune wise. That wasn't entirely their fault though..our dr. had insisted doing IVIG the month before we went saying that it only takes 3 weeks to completely get out of their system, when I argued it took 3 months. I turned out to be right and therefore Dr. Gelfand couldn't get a " true " picture of her immune system. They want us to come back..but with 3 older children, I just haven't had the time. The nurses on their lung line are very, very nice and helpful, but I would just make it real clear your financial situation when or if you go. They did take care of everything with my insurance for me, but they also told me our part would be between $600-$700 total. I got the bill after getting home and our part was $2,500! I know there were other people there that had made financial arrangements before coming...so I'd recommend checking into all that right off the bat. I also just let them run what ever kind of tests they wanted thinking that was all part of it and not knowing that each test they ran was adding up. So part of that was my fault. It sounds like you will only need labwork done, so that should not be near as costly. We were there for 2 full weeks and had 24 hr ph probes, catscans of lungs & sinuses, skin biopsies, allergy testing, eczema treatment and numerous other things done while we were there. Dr. Gelfand is supposed to be one of the best and was a very, very nice man. He really listens to you and interacts with the children very well. Reagon is almost 5 now (birthday is in May) and is doing wonderfully. Those first 2 years were so tough and she was on mainly Neocate for 18 months, but around 2 years old she started doing better and better. I'd say by 2 1/2 or 3 she was able to eat almost anything she wanted. She still has a handful of foods she reacts to,but nothing like she used to! She is still very small and skinny for her age (10%), but healthy, happy and very, very active. You would never know she was sick by looking at her! Please feel free to keep asking questions!! Becki Reagon (4 yrs.) CVID, asthma, allergies Becki Maybe I will try the neocate. It can't hurt right? Were you happy with the docs at National Jewish. I was going to call them today and just talk to them. Maybe that would be the best place, I've heard a lot of good things. How old is Reagon now? Ana eats rice cereal, peaches, peach cobbler and sweet potat. She had reacted to carrots at eight months with blood in her stool so we stopped that, and have now tried to reintroduce it, but she hates the taste. We are working with a feeding clinic but they treat it as a behavioral problem, which I don't think it is. Thanks for the encouragement. Hopefully we'll get somewhere with this! > > > Hello all, > > > > > > Thank you for letting me join this community. Dayna directed > me > > to > > > it and I can already see it will be very helpful. I live in > > > Woodbury, MN and am mother to a one year old little joy named > > Ana. > > > She was born in Waconia, MN 10 days early, I had toxemia. She > was > > > healthy until around 11 weeks. Started then with croup. At 3 > > > months hospitilized with RSV for a week. That was followed by > 2 > > > pneumonia's. I started asking questions about this being > normal > > and > > > was told it was just bad luck. Luckily had a very good peds > doc > > who > > > humored me by checking Ana's immune system at six months. She > > came > > > back with very low IgG levels. She refered us to an allergist > who > > > said it was normal at six months. We went to a different > > > immunologist at nine months and they rechecked, her levels had > > > dropped further. Since six months she has had ongoing sinus > and > > ear > > > infections. Off of the antibiotics for less then 3-4 days > before > > it > > > comes back every time. We are now waiting for 12 month > recheck > > > results then I will push for them to do more for her. She is > not > > > growing. Has dropped from the 75% at six months for weight to > > below > > > the 10% at 12 months. Less then a pounds in the last six > months. > > > They say she has dairy allergy, though it doesn't seem like a > true > > > allergy to me, and all the allergy tests were negative. But > she > > and > > > I (she is still nursed at night) are off dairy. She loves to > read > > > books and cuddle. Very lovey little girl, my joy. I look > forward > > > to swapping ideas with everyone and can not express how > thankful I > > > am going to be for the support from people who understand. > What a > > > Godsend! Hope to talk to each of you soon. > > > > > > Fritze > > > mom to Ana Marie, my angel > > > > > > > > > > > > > > > > > > > > > This forum is open to parents and caregivers of children > diagnosed > > with a Primary Immune Deficiency. Opinions or medical advice > stated > > here are the sole responsibility of the poster and should not be > > taken as professional advice. > > > > > > To unsubscribe -unsubscribegroups (DOT) > > > To search group archives go to: > > /messages > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2006 Report Share Posted February 28, 2006 Thanks for all the info. Was Dr. Gelfand able to give an idea of what was going on digestively or did you just wait it out. If we do go I want to get answers on both sides, immunology and GI. Did they do more extensive testing of the immune system then your local doc? I just want to make sure it is worth it. I will chat with their nurses though. Is Reagon still on IGIV? Do they think she will grow out of it? Five years seems so long right now, even if Ana does grow out of this, I just feel like something needs to change in the mean time. Thanks! > > > > Hello all, > > > > > > > > Thank you for letting me join this community. Dayna > directed > > me > > > to > > > > it and I can already see it will be very helpful. I live > in > > > > Woodbury, MN and am mother to a one year old little joy > named > > > Ana. > > > > She was born in Waconia, MN 10 days early, I had toxemia. > She > > was > > > > healthy until around 11 weeks. Started then with croup. > At 3 > > > > months hospitilized with RSV for a week. That was > followed by > > 2 > > > > pneumonia's. I started asking questions about this being > > normal > > > and > > > > was told it was just bad luck. Luckily had a very good > peds > > doc > > > who > > > > humored me by checking Ana's immune system at six months. > She > > > came > > > > back with very low IgG levels. She refered us to an > allergist > > who > > > > said it was normal at six months. We went to a different > > > > immunologist at nine months and they rechecked, her levels > had > > > > dropped further. Since six months she has had ongoing > sinus > > and > > > ear > > > > infections. Off of the antibiotics for less then 3-4 days > > before > > > it > > > > comes back every time. We are now waiting for 12 month > > recheck > > > > results then I will push for them to do more for her. She > is > > not > > > > growing. Has dropped from the 75% at six months for > weight to > > > below > > > > the 10% at 12 months. Less then a pounds in the last six > > months. > > > > They say she has dairy allergy, though it doesn't seem > like a > > true > > > > allergy to me, and all the allergy tests were negative. > But > > she > > > and > > > > I (she is still nursed at night) are off dairy. She loves > to > > read > > > > books and cuddle. Very lovey little girl, my joy. I look > > forward > > > > to swapping ideas with everyone and can not express how > > thankful I > > > > am going to be for the support from people who > understand. > > What a > > > > Godsend! Hope to talk to each of you soon. > > > > > > > > Fritze > > > > mom to Ana Marie, my angel > > > > > > > > > > > > > > > > > > > > > > > > > > > > This forum is open to parents and caregivers of children > > diagnosed > > > with a Primary Immune Deficiency. Opinions or medical > advice > > stated > > > here are the sole responsibility of the poster and should > not be > > > taken as professional advice. > > > > > > > > To unsubscribe -unsubscribegroups (DOT) > > > > To search group archives go to: > > > /messages > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2006 Report Share Posted February 28, 2006 Thanks for all the info. Was Dr. Gelfand able to give an idea of what was going on digestively or did you just wait it out. If we do go I want to get answers on both sides, immunology and GI. Did they do more extensive testing of the immune system then your local doc? I just want to make sure it is worth it. I will chat with their nurses though. Is Reagon still on IGIV? Do they think she will grow out of it? Five years seems so long right now, even if Ana does grow out of this, I just feel like something needs to change in the mean time. Thanks! > > > > Hello all, > > > > > > > > Thank you for letting me join this community. Dayna > directed > > me > > > to > > > > it and I can already see it will be very helpful. I live > in > > > > Woodbury, MN and am mother to a one year old little joy > named > > > Ana. > > > > She was born in Waconia, MN 10 days early, I had toxemia. > She > > was > > > > healthy until around 11 weeks. Started then with croup. > At 3 > > > > months hospitilized with RSV for a week. That was > followed by > > 2 > > > > pneumonia's. I started asking questions about this being > > normal > > > and > > > > was told it was just bad luck. Luckily had a very good > peds > > doc > > > who > > > > humored me by checking Ana's immune system at six months. > She > > > came > > > > back with very low IgG levels. She refered us to an > allergist > > who > > > > said it was normal at six months. We went to a different > > > > immunologist at nine months and they rechecked, her levels > had > > > > dropped further. Since six months she has had ongoing > sinus > > and > > > ear > > > > infections. Off of the antibiotics for less then 3-4 days > > before > > > it > > > > comes back every time. We are now waiting for 12 month > > recheck > > > > results then I will push for them to do more for her. She > is > > not > > > > growing. Has dropped from the 75% at six months for > weight to > > > below > > > > the 10% at 12 months. Less then a pounds in the last six > > months. > > > > They say she has dairy allergy, though it doesn't seem > like a > > true > > > > allergy to me, and all the allergy tests were negative. > But > > she > > > and > > > > I (she is still nursed at night) are off dairy. She loves > to > > read > > > > books and cuddle. Very lovey little girl, my joy. I look > > forward > > > > to swapping ideas with everyone and can not express how > > thankful I > > > > am going to be for the support from people who > understand. > > What a > > > > Godsend! Hope to talk to each of you soon. > > > > > > > > Fritze > > > > mom to Ana Marie, my angel > > > > > > > > > > > > > > > > > > > > > > > > > > > > This forum is open to parents and caregivers of children > > diagnosed > > > with a Primary Immune Deficiency. Opinions or medical > advice > > stated > > > here are the sole responsibility of the poster and should > not be > > > taken as professional advice. > > > > > > > > To unsubscribe -unsubscribegroups (DOT) > > > > To search group archives go to: > > > /messages > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2006 Report Share Posted February 28, 2006 > > Maybe I will try the neocate. It can't hurt right? Neocate has been a lifesaver for us! My son was on Neocate and rice until he was 18 months old because he reacted to everything else we tried with terrible GI symptoms like vomiting, diarrhea, bloody stools, bloating, etc. and some ectopic symptoms including an all-over body rash (eczema) and some hives. I had nursed him for 3 months, but even with eliminating all dairy, soy, beef, etc. he still had bloody stools and diarrhea. We tried Alimentum which made things even worse and lead to the eczema. He went on the Neocate at 4 months old and did very well after just a couple weeks...his stools were better, eczema cleared...and he LOVED it! It definately can't hurt to give it a try for a couple weeks...I think it takes at least that long for the GI tract to heal. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2006 Report Share Posted February 28, 2006 It definately can't hurt to > give it a try for a couple weeks...I think it takes at least that long > for the GI tract to heal. Oops...I forgot to mention that the stools do get very strange as soon as you start the Neocate...Will's were very dark almost like meconium all over again. After about 2 to 3 weeks the gut heals and the stools look more normal. Krista Mom to --2 yrs old, " undefined " Hypogammaglobulinemia with history of multiple food intolerance and reflux and --almost 5 yrs old, asthma, lactose intolerant, moderate/severe environmental allergies > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2006 Report Share Posted February 28, 2006 , We were able to resolve Reagon's digestive issues with the Neocate. By the time she was 18 months her gut was healed and she was on her way to eating regular food. We still see a gastro. doc & food allergist just to stay on top of things, but we only go about twice a year. Once she did start eating regular foods she was on an oral medicine before meals called Gastrocrom that helped prevent reactions to foods. She has been off of it for awhile, but we are actually in the process of debating putting her back on it. I don't know that National Jewish has a GI dr...we didn't need to address that when we were there. They did run some very extensive bloodwork, but none of it seemed to give us any more answers than we already had. If you get a good immunologist he should be able to get a pretty good picture of where her immune system is. I would be sure and tell them you want to check her eosinophil levels..not all drs. will check for that and that could be playing a big part in her digestive problems. Reagon is currently not on IVIG..much to her drs. dismay. Two of her drs. want her back on and one says she doesn't need it for now. She has been off of it for almost 9 months and has been doing great. During the middle of 2004 we started only giving it to her every 3 months and then took her off completely in July 2005. She is doing fine and shows no signs of lung damage, but we do still watch her like a hawk and have her labs run once a month. They keep telling me though that by this age they don't think she will outgrow it. I just keep praying she will stay healthy until they come up with a gene therapy that works for her type of B cell defect. They did talk to me briefly at National Jewish about this and it's something I'd love to know more about. Apparantly they are working on it. Reagon started doing soooo much better when we put her on the Neocate. Hang in there...things will get better once you get some answers from the immunologist. When do you go see the new dr.? Becki Re: Becki Thanks for all the info. Was Dr. Gelfand able to give an idea of what was going on digestively or did you just wait it out. If we do go I want to get answers on both sides, immunology and GI. Did they do more extensive testing of the immune system then your local doc? I just want to make sure it is worth it. I will chat with their nurses though. Is Reagon still on IGIV? Do they think she will grow out of it? Five years seems so long right now, even if Ana does grow out of this, I just feel like something needs to change in the mean time. Thanks! > > > > Hello all, > > > > > > > > Thank you for letting me join this community. Dayna > directed > > me > > > to > > > > it and I can already see it will be very helpful. I live > in > > > > Woodbury, MN and am mother to a one year old little joy > named > > > Ana. > > > > She was born in Waconia, MN 10 days early, I had toxemia. > She > > was > > > > healthy until around 11 weeks. Started then with croup. > At 3 > > > > months hospitilized with RSV for a week. That was > followed by > > 2 > > > > pneumonia's. I started asking questions about this being > > normal > > > and > > > > was told it was just bad luck. Luckily had a very good > peds > > doc > > > who > > > > humored me by checking Ana's immune system at six months. > She > > > came > > > > back with very low IgG levels. She refered us to an > allergist > > who > > > > said it was normal at six months. We went to a different > > > > immunologist at nine months and they rechecked, her levels > had > > > > dropped further. Since six months she has had ongoing > sinus > > and > > > ear > > > > infections. Off of the antibiotics for less then 3-4 days > > before > > > it > > > > comes back every time. We are now waiting for 12 month > > recheck > > > > results then I will push for them to do more for her. She > is > > not > > > > growing. Has dropped from the 75% at six months for > weight to > > > below > > > > the 10% at 12 months. Less then a pounds in the last six > > months. > > > > They say she has dairy allergy, though it doesn't seem > like a > > true > > > > allergy to me, and all the allergy tests were negative. > But > > she > > > and > > > > I (she is still nursed at night) are off dairy. She loves > to > > read > > > > books and cuddle. Very lovey little girl, my joy. I look > > forward > > > > to swapping ideas with everyone and can not express how > > thankful I > > > > am going to be for the support from people who > understand. > > What a > > > > Godsend! Hope to talk to each of you soon. > > > > > > > > Fritze > > > > mom to Ana Marie, my angel > > > > > > > > > > > > > > > > > > > > > > > > > > > > This forum is open to parents and caregivers of children > > diagnosed > > > with a Primary Immune Deficiency. Opinions or medical > advice > > stated > > > here are the sole responsibility of the poster and should > not be > > > taken as professional advice. > > > > > > > > To unsubscribe -unsubscribegroups (DOT) > > > > To search group archives go to: > > > /messages > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2009 Report Share Posted September 15, 2009 Becki, Ok, no appology needed. But you did confuse me for a minute until I read the second post.? Jaye also has migrains but I did not remember posting about them in that post so I had to reread what I had posted.? I used to get migrains when I was younger quite often. Now for me to get a bad migrain is very rare. Jaye and Kristie Jo both deal with them on a regular basis.? But I think I have noticed that Kristie Jo is not getting them as often as she used to also so wonder if she is outgrowing them.? Veri & Jaye 15 poly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2011 Report Share Posted April 23, 2011 Becki how long did it take for to be in remission? What drugs was he on? ________________________________ From: Becki Larson <sojramom@...> Sent: Tue, April 19, 2011 8:52:57 PM Subject: Re: so frustrated... Hi, We drive 6 hrs up to Cincinnati Children's from Tennessee and they are a godsend. They are the best of the best and because they are always leading some sort of research study they are very aggressive in therapy. My guess is that they will want to do some joint injections and or start MTX. They are a GREAT group of doctors that do not believe that with todays meds that a child should suffer.They will get your girl up and running in no time. We make our drive up there tomorrow because they got my son in remission and now off meds. Good luck, I know they can help. Who are you seeing? We see Lovell. Becki and 12 systemic onset ________________________________ From: " danmanley47@... " <danmanley47@...> Sent: Tue, April 19, 2011 8:36:06 PM Subject: so frustrated... Hi everyone, I posted last week that we were going to see our rheumatologist on Friday. The visit did not go very well, in my opinion. She stated she did still have some fluid in one of her knees, some synovial thickening in her left wrist, swelling in her ankle, and atrophy in one of her calves. However, she was hesitant to make a change in her medications. She said she needs physical therapy, which I do agree with. However, she was not even going to change her meds, until I insisted that what she was on was not working. She has been on various NSAIDS for about three months, and they have not worked at all. She just switched her from Sulindac to Indocin. Today she has been in as much pain as ever. We do not hve a follow up visit until July! I think this is crazy. We are leaving for Florida on Thursday from Michigan, and I have made an appointment to see a rheumy in Cincinatti on our way down. Does anyone have any experience with the very large group there? It is five hours from our house, but if they are able to help, I would drive it every week if I needed to. I feel she needs to be on methotrexate at this point, as she can barely walk and her hands are just kiling her. She also has very severe Raynauds. Today, her family doctor did prescribe Ultram; hopefully that will give her some relief. I just want to ge her going on some meds beore she gets any permanent joint damage! Jeanette Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2011 Report Share Posted April 23, 2011 around 15-18 months the first time.He got sick at age 2 and was so sick he had to wait 2 weeks before starting DMARDS.High doses of Prednisilone,maxed out on Ibuprphen,MTX and Plaquenil.We entered a Enbrel trial at CCHMC at 4 and that changed his life.We did have to post pone the first trip because had 2 steroid injections prior AND WAS IN A HARD CAST. was on triple DMARD therapy but the first drug to drop was the Plaquenil.He made NOTHING but improvement til age 6 and got down to 2.5mg MTX for 2 1/2 moths then both wrists hit hard. It took about another year to get the all clear sighn as far as NOTHING. will be 13 in late July been off the MTX for well over a yr and last shot of Enbrel was Feb. 7. He is doing GREAT! He plays LL baseball and has already been told he made the alllstar team as starting pitcher and that he he is gifted at it ________________________________ From: Amy Spurger <mom2anz@...> Sent: Sat, April 23, 2011 8:06:56 AM Subject: Re: Becki Becki how long did it take for to be in remission? What drugs was he on? ________________________________ From: Becki Larson <sojramom@...> Sent: Tue, April 19, 2011 8:52:57 PM Subject: Re: so frustrated... Hi, We drive 6 hrs up to Cincinnati Children's from Tennessee and they are a godsend. They are the best of the best and because they are always leading some sort of research study they are very aggressive in therapy. My guess is that they will want to do some joint injections and or start MTX. They are a GREAT group of doctors that do not believe that with todays meds that a child should suffer.They will get your girl up and running in no time. We make our drive up there tomorrow because they got my son in remission and now off meds. Good luck, I know they can help. Who are you seeing? We see Lovell. Becki and 12 systemic onset ________________________________ From: " danmanley47@... " <danmanley47@...> Sent: Tue, April 19, 2011 8:36:06 PM Subject: so frustrated... Hi everyone, I posted last week that we were going to see our rheumatologist on Friday. The visit did not go very well, in my opinion. She stated she did still have some fluid in one of her knees, some synovial thickening in her left wrist, swelling in her ankle, and atrophy in one of her calves. However, she was hesitant to make a change in her medications. She said she needs physical therapy, which I do agree with. However, she was not even going to change her meds, until I insisted that what she was on was not working. She has been on various NSAIDS for about three months, and they have not worked at all. She just switched her from Sulindac to Indocin. Today she has been in as much pain as ever. We do not hve a follow up visit until July! I think this is crazy. We are leaving for Florida on Thursday from Michigan, and I have made an appointment to see a rheumy in Cincinatti on our way down. Does anyone have any experience with the very large group there? It is five hours from our house, but if they are able to help, I would drive it every week if I needed to. I feel she needs to be on methotrexate at this point, as she can barely walk and her hands are just kiling her. She also has very severe Raynauds. Today, her family doctor did prescribe Ultram; hopefully that will give her some relief. I just want to ge her going on some meds beore she gets any permanent joint damage! Jeanette Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2011 Report Share Posted April 24, 2011 Wow what a long road, I am so happy he is doing so well now!  Very cool about the baseball!  Thanks for sharing that with me, it does give hope but I can't imagine going through that with one so young.  Amy mom to Avery 17 systemic  ________________________________ From: Becki Larson <sojramom@...> Sent: Saturday, April 23, 2011 11:52 PM Subject: Re: Becki  around 15-18 months the first time.He got sick at age 2 and was so sick he had to wait 2 weeks before starting DMARDS.High doses of Prednisilone,maxed out on Ibuprphen,MTX and Plaquenil.We entered a Enbrel trial at CCHMC at 4 and that changed his life.We did have to post pone the first trip because had 2 steroid injections prior AND WAS IN A HARD CAST. was on triple DMARD therapy but the first drug to drop was the Plaquenil.He made NOTHING but improvement til age 6 and got down to 2.5mg MTX for 2 1/2 moths then both wrists hit hard. It took about another year to get the all clear sighn as far as NOTHING. will be 13 in late July been off the MTX for well over a yr and last shot of Enbrel was Feb. 7. He is doing GREAT! He plays LL baseball and has already been told he made the alllstar team as starting pitcher and that he he is gifted at it ________________________________ From: Amy Spurger <mom2anz@...> Sent: Sat, April 23, 2011 8:06:56 AM Subject: Re: Becki Becki how long did it take for to be in remission? What drugs was he on? ________________________________ From: Becki Larson <sojramom@...> Sent: Tue, April 19, 2011 8:52:57 PM Subject: Re: so frustrated... Hi, We drive 6 hrs up to Cincinnati Children's from Tennessee and they are a godsend. They are the best of the best and because they are always leading some sort of research study they are very aggressive in therapy. My guess is that they will want to do some joint injections and or start MTX. They are a GREAT group of doctors that do not believe that with todays meds that a child should suffer.They will get your girl up and running in no time. We make our drive up there tomorrow because they got my son in remission and now off meds. Good luck, I know they can help. Who are you seeing? We see Lovell. Becki and 12 systemic onset ________________________________ From: " danmanley47@... " <danmanley47@...> Sent: Tue, April 19, 2011 8:36:06 PM Subject: so frustrated... Hi everyone, I posted last week that we were going to see our rheumatologist on Friday. The visit did not go very well, in my opinion. She stated she did still have some fluid in one of her knees, some synovial thickening in her left wrist, swelling in her ankle, and atrophy in one of her calves. However, she was hesitant to make a change in her medications. She said she needs physical therapy, which I do agree with. However, she was not even going to change her meds, until I insisted that what she was on was not working. She has been on various NSAIDS for about three months, and they have not worked at all. She just switched her from Sulindac to Indocin. Today she has been in as much pain as ever. We do not hve a follow up visit until July! I think this is crazy. We are leaving for Florida on Thursday from Michigan, and I have made an appointment to see a rheumy in Cincinatti on our way down. Does anyone have any experience with the very large group there? It is five hours from our house, but if they are able to help, I would drive it every week if I needed to. I feel she needs to be on methotrexate at this point, as she can barely walk and her hands are just kiling her. She also has very severe Raynauds. Today, her family doctor did prescribe Ultram; hopefully that will give her some relief. I just want to ge her going on some meds beore she gets any permanent joint damage! Jeanette Quote Link to comment Share on other sites More sharing options...
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