Guest guest Posted October 8, 2009 Report Share Posted October 8, 2009 Wow! I'm amazed how the topic vaccines can bring out the worst in some people especially families. It's. A scary subject and don't give up! You're fortunate to have your husband back u up on this and keep hoping you can break the cycle in the family on being pro vax. I remember someone telling me once, "Don't be the weak link in your family." That helped me stay strong when families goes against me.Sent on the Now Network™ from my Sprint® BlackBerryFrom: "Kate" <ktietje85@...>Date: Thu, 08 Oct 2009 15:22:20 -0000<Vaccinations >Subject: So Frustrated... Just need to vent and it's vaccine related.So we found out a few days ago (I posted) that Bekah has some serious deficiencies, which, if not treated or if mixed with vaccinations, could lead to autism. And I'm scared because I've already seen some signs of regression. Some words she had 4 - 5 months ago she doesn't ever use anymore, and she looks at me like I'm crazy if I ask her to say them (although she still understands and if I ask her a question using them she'll answer).I've posted a bit about what's going on on my Facebook page, and my belief about vaccines - autism. Some people have gotten pretty nasty about it, unfortunately mostly (distant) family members. This morning one of them said " If I had all that time to read articles, I'd spend it enjoying my kids instead. " I really lost it with her, because she's not even a parent, and reading those articles may have SAVED my kid! She has no idea what she's talking about.Five minutes after I posted a rather rude response to her, her MIL (my cousin by marriage) told me she's trying to have a baby and can't get pregnant, so since we can't all get along, they're all going to have to unfriend both me and my husband on Facebook. I'm so frustrated with that because it's going to make my MIL unhappy. My husband said " good, so be it " because he's really sick of this too. He's been backing me up on everything the last day or so. But ugh! I don't go on their pages to criticize all their choices. They have no idea what I'm going through. I only responded to what they said on my page.Then, I posted several reasons not to vaccinate with many (38) sources, to which several " medical " people (most are still students) said " those are not credible sources " because they only believe (biased) medical journals. So we actually found an article published in JAMA that showed that incidence of disease declined steadily until vaccines were introduced, and then began to climb. All they said about that was " it's too old " (10 years old, but, um, is data from 1900 - 1980 going to have changed in the last 10 years?) and " that only proves correlation, not causation " (regarding disease rates AFTER vaccination introduction...to which I said " then you can't prove that vaccines actually caused rates to decline in the first place " ).Anyone else have any journals they'd like to throw on this one? They won't change their minds, because they like to say " show me real evidence and I'll change my position " but they don't mean it. We also asked one person to produce some of the 'many' studies she said existed to prove vaccines were good, since she didn't like our sources that said they weren't, and she said she prefers to just back up what she says with her own knowledge! Talk about the fox guarding the chickens, right?Anyway, I just needed to vent. I'm so tired of all these pro-vax people. And now, knowing that my daughter has a few issues anyway and that vaxxing her could have seriously caused permanent brain damage and who knows what, and people STILL trying to tell me I'm wrong...well, I just have no patience with it. Thanks.--KateMommy to Rebekah, 1-26-08, 7-16-09 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2009 Report Share Posted October 8, 2009 In my personal experience (and of course this is just my opinion), I do not ‘touch’ the vaccine subject with family members who adamantly believe they are essential and a valued piece of preventative medicine. Naturally, those in my family who believe this have done absolutely no research on the subject whatsoever (almost all are on my husbands side of the family) and are indoctrinated with what the mass media has to say on the subject. I love my family and they will be my family for all my life and my children’s life. I value the relationship my children have with them and want them to continue to grown with them and to be a part of their lives. As such, the vaccine issue is incredibly divisive. “They” know not to broach the subject with me, less they are actually willing to have a mature dialogue and not just take pot-shots in an attempt to “set me straight”. This issue, in my opinion, is not worth losing loved ones over. Chris From: Vaccinations [mailto:Vaccinations ] On Behalf Of Lnanaa@... Sent: Thursday, October 08, 2009 9:16 AM Vaccinations Subject: Re: So Frustrated... Wow! I'm amazed how the topic vaccines can bring out the worst in some people especially families. It's. A scary subject and don't give up! You're fortunate to have your husband back u up on this and keep hoping you can break the cycle in the family on being pro vax. I remember someone telling me once, " Don't be the weak link in your family. " That helped me stay strong when families goes against me. Sent on the Now Network from my Sprint® BlackBerry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2009 Report Share Posted October 8, 2009 I wouldn't discuss vaccines with them. You won't convince them of anything and you'll waste a lot of time and energy trying to do so. These kinds of people just like to see people jump and jump and jump. If they were truly interested, they'd look up info themselves rather than challenging you to find the "perfect" document over and over again. You know you're right, and you know you're doing the right thing for your daughter. And I don't think I'd consider it regression just because a 1-yr old child refused to repeat what you ask. Sounds to me like she's moving on to new words and new experiences--perfectly normal. Winnie So Frustrated...Vaccinations > Just need to vent and it's vaccine related.> > So we found out a few days ago (I posted) that Bekah has some > serious deficiencies, which, if not treated or if mixed with > vaccinations, could lead to autism. And I'm scared because I've > already seen some signs of regression. Some words she had 4 - 5 > months ago she doesn't ever use anymore, and she looks at me > like I'm crazy if I ask her to say them (although she still > understands and if I ask her a question using them she'll answer).> > I've posted a bit about what's going on on my Facebook page, and > my belief about vaccines - autism. Some people have gotten > pretty nasty about it, unfortunately mostly (distant) family > members. This morning one of them said "If I had all that time > to read articles, I'd spend it enjoying my kids instead." I > really lost it with her, because she's not even a parent, and > reading those articles may have SAVED my kid! She has no idea > what she's talking about.> > Five minutes after I posted a rather rude response to her, her > MIL (my cousin by marriage) told me she's trying to have a baby > and can't get pregnant, so since we can't all get along, they're > all going to have to unfriend both me and my husband on > Facebook. I'm so frustrated with that because it's going to > make my MIL unhappy. My husband said "good, so be it" because > he's really sick of this too. He's been backing me up on > everything the last day or so. But ugh! I don't go on their > pages to criticize all their choices. They have no idea what > I'm going through. I only responded to what they said on my page.> > Then, I posted several reasons not to vaccinate with many (38) > sources, to which several "medical" people (most are still > students) said "those are not credible sources" because they > only believe (biased) medical journals. So we actually found an > article published in JAMA that showed that incidence of disease > declined steadily until vaccines were introduced, and then began > to climb. All they said about that was "it's too old" (10 years > old, but, um, is data from 1900 - 1980 going to have changed in > the last 10 years?) and "that only proves correlation, not > causation" (regarding disease rates AFTER vaccination > introduction...to which I said "then you can't prove that > vaccines actually caused rates to decline in the first place").> > Anyone else have any journals they'd like to throw on this one? > They won't change their minds, because they like to say "show me > real evidence and I'll change my position" but they don't mean > it. We also asked one person to produce some of the 'many' > studies she said existed to prove vaccines were good, since she > didn't like our sources that said they weren't, and she said she > prefers to just back up what she says with her own knowledge! > Talk about the fox guarding the chickens, right?> > Anyway, I just needed to vent. I'm so tired of all these pro-> vax people. And now, knowing that my daughter has a few issues > anyway and that vaxxing her could have seriously caused > permanent brain damage and who knows what, and people STILL > trying to tell me I'm wrong...well, I just have no patience with > it. Thanks.> > --Kate> Mommy to Rebekah, 1-26-08> , 7-16-09> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2011 Report Share Posted April 19, 2011 I think you are doing the right thing. Cincy is very highly regarded. I am sure someone will chime in with specific docs there. You want to stop the disease progression, and NSAIDs don't do that. Your child shouldn't need pain meds. The disease should be better controlled. ( n, 22, systemic) Sent from my iPhone On Apr 19, 2011, at 6:36 PM, danmanley47@... wrote: > 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 19, 2011 Report Share Posted April 19, 2011 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 19, 2011 Report Share Posted April 19, 2011 Thank you . I don't know why our rheumatologist is so hesitant to change her meds; it is like she is trying to minimize the pain she is having. It seems the goal should be to stop the pain and prevent any joint damage. My daughter has been in constant pain for three months. Jeanette ________________________________ From: Price <bc.price@...> " " < > Sent: Tue, April 19, 2011 9:45:18 PM Subject: Re: so frustrated...  I think you are doing the right thing. Cincy is very highly regarded. I am sure someone will chime in with specific docs there. You want to stop the disease progression, and NSAIDs don't do that. Your child shouldn't need pain meds. The disease should be better controlled. ( n, 22, systemic) Sent from my iPhone On Apr 19, 2011, at 6:36 PM, danmanley47@... wrote: > 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 19, 2011 Report Share Posted April 19, 2011 Hi Becki, We have an appointment with Dr Wilkenson. I am so happy to hear that you have had such positive results with this group. It seems like the docs we have seen here in Michigan have been not much help at all. Amelia's knee is so bad, I am sure she could benefit from an injection. Like you, I would drive any amount of hours to make my child feel better! Jeanette ________________________________ From: Becki Larson <sojramom@...> Sent: Tue, April 19, 2011 9:52:57 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 19, 2011 Report Share Posted April 19, 2011 That is unacceptable to me. Go to Cincy. Sent from my iPhone On Apr 19, 2011, at 7:00 PM, Dan Sauer <danmanley47@...> wrote: > Thank you . I don't know why our rheumatologist is so hesitant to change > her meds; it is like she is trying to minimize the pain she is having. It seems > the goal should be to stop the pain and prevent any joint damage. My daughter > has been in constant pain for three months. > > Jeanette > > ________________________________ > From: Price <bc.price@...> > " " < > > Sent: Tue, April 19, 2011 9:45:18 PM > Subject: Re: so frustrated... > > > I think you are doing the right thing. Cincy is very highly regarded. I am sure > someone will chime in with specific docs there. You want to stop the disease > progression, and NSAIDs don't do that. Your child shouldn't need pain meds. The > disease should be better controlled. ( n, 22, systemic) > > Sent from my iPhone > > On Apr 19, 2011, at 6:36 PM, danmanley47@... wrote: > > > 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 19, 2011 Report Share Posted April 19, 2011 Our appointment is actually with Dr. Hendrickson; my husband got it wrong. Does anyone out there have any experience with him? Jeanette > > Hi Becki, > We have an appointment with Dr Wilkenson. I am so happy to hear that you have > had such positive results with this group. It seems like the docs we have seen > here in Michigan have been not much help at all. Amelia's knee is so bad, I am > sure she could benefit from an injection. Like you, I would drive any amount of > hours to make my child feel better! > Jeanette > > > > ________________________________ > From: Becki Larson <sojramom@...> > > Sent: Tue, April 19, 2011 9:52:57 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 19, 2011 Report Share Posted April 19, 2011 Jeanette, I'm so glad to hear you're going for a second opinion in Cincinatti. There's nothing wrong with getting another doctor's thoughts and ideas. Our second opinion peds orthopedic found Lexi's JIA. Then we had a peds rheumy for my daughter that was only 80 miles away and ended up switching to one that is nearly 160 miles away because the first one wasn't aggressive enough. Lexi has also had a joint injection that has done wonders for her as well - we've been going to occupational therapy for over 13 months and they're finally talking about discharging her from their services! You shouldn't need to worry about pain control for your daughter because well controlled arthritis doesn't need much beyond tylenol occasionally. That's the big lesson I've learned since finding this website and getting my child's JIA controlled in the last few months. Thinking of you and your daughter. Be safe in your travels and please keep us updated with how her appointment goes. , daughter is 5, pauci > > 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 19, 2011 Report Share Posted April 19, 2011 Jeanette, I hope that your visit will be a good one. When you have a doctor that is not giving you the care you know you need then you need to change. We do not drive five hours but we do drive three hours each way to see our rheumy. We had one that was 30 minutes away that we started with but changed when she thought that we did not need a specialist but our pediatrician could take care of it all for us. Our ped was not thrilled with that idea eather. I know nothing about the doctors at Cincy except what I have read from the mom's on this list that there are a great group of them there. I pray that you will have a safe, enjoyable and painfree trip to Florida and that the rheumy will give you the encouragement and support you need. Veri & Jaye 17 poly 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 20, 2011 Report Share Posted April 20, 2011 Jeannette. I am so sorry your current doc is not being aggressive enough. I think you will love Cincinnati children's. We see Dr Huggins, she is great. Dr. Lovell is good also. I live here in Cincinnati. I am on the Northeast side of town, about 20 minutes from Children's but if you need anything or want to crash for the night after your appointment, let me know. IF you make a day of it here in Cincinnati, the Zoo is a couple blocks from the hospital. Here is my home email, just let me know if you have any questions or want to get together or have any needs. jbullock@... Joann, Mom to Zoe,(9), Pauciarticular JIA & Uveitis. > > 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 20, 2011 Report Share Posted April 20, 2011 Just a couple of things to add. Indocin can be tough on the tummy. It caused nausea, vomiting, and diarrhea for my daughter, but not for my son. Weird. PT is excellent. Our PT is a ped specialist and her care and expertise is priceless. Your doc. reminds me of our first rheumy. Just not aggressive enough and in my opinion, not caring enough. I am not waiting 6 or more weeks with my child in pain. That is not according to JA guidelines! Good going! Audra 14 poly 07 Peyton 13 poly 08 > > 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2011 Report Share Posted April 20, 2011 Sorry, I am not familiar with this particular Dr. but they have ALL trained with the best and are the best.Because you are on your way to Florida they will probably give you a couple of options to think about.So fire away with any questions. I will say if they want to do any injections that day " Go for it " Mtx takes weeks to months to kick in and the best rout is sub q injections or you are playing a game of Russion Roulette.When you take MTX pills' only so much is absorbed by the body but with shots you get the full prescribed dose. No one wants to give shots but practicing on an orange helps and for the first 3 months our peds nurse did it for free.Once got fairly comfortable and me too I started giving them. It was tough for a while but things got better,especially after he started to feel better.At age 6 there is a product called Emla Cream that realy does work. We left it on for 2 hrs and he didn't feel anything.You can use it on younger children but mental wise it doesn't help until atleast 6. Prayers and gentle hugs, Becki and 12 Systemic onset AKA The barefoot Tn Flash ________________________________ From: " danmanley47@... " <danmanley47@...> Sent: Tue, April 19, 2011 10:08:15 PM Subject: Re: so frustrated... Our appointment is actually with Dr. Hendrickson; my husband got it wrong. Does anyone out there have any experience with him? Jeanette > > Hi Becki, > We have an appointment with Dr Wilkenson. I am so happy to hear that you have > > had such positive results with this group. It seems like the docs we have >seen > > here in Michigan have been not much help at all. Amelia's knee is so bad, I >am > > sure she could benefit from an injection. Like you, I would drive any amount >of > > hours to make my child feel better! > Jeanette > > > > ________________________________ > From: Becki Larson <sojramom@...> > > Sent: Tue, April 19, 2011 9:52:57 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 I am so sorry, I hope she gets some relief soon. Amy mom to Avery 17 systemic ________________________________ 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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