Guest guest Posted April 10, 2006 Report Share Posted April 10, 2006 , I talk with about what's in the Post's here. I also get her opinion about some of the Questions here. She told the Dr about the Kid's also. She said JRA kid's get rashes. She will talk about not only her but every Kid with JRA. Maybe this way with this Dr He will talk with other Derm Dr's to and see about it. One Voice is all it take to travel along way. I was sent a Questionaire before this Derm Appointment. Then was asked about the rash and first signs of it and How long it has been going on. As I told I am going to take Pictures of it also. So she has to tell me when it starts then I will do a Day by Day picture of how it get's. Then I will hand to the Dr as a back up. Robbin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2006 Report Share Posted April 10, 2006 > > Hi All, Robin, The idea of another skin biopsy sounds yucky but the fact that this dr is listening to your dtr and willing to research it more is pretty impressive. As you know, Aundrea has always had blotchy skin rashes. Worse with flares and sunlight and nothing has improved it. Unlike though, Aundrea's rash doesn't usually itch so we have avoided any treatment or biopsy's at this time. Please continue to let us know what happens along this line. You have a brave daughter! (Aundrea 10 systemic jra) > Hope this finds each with no pain and enjoying this nice weather. > and I went to get the Stitch out today and talked with the Dr. He > asked if had any new spots and she said Yes. He looked at them and said > I am going to have to take another Biopsy. He said not this visit but > when you come back to see me in May. said Why another one. The Dr > said well I know you have JRA and I did some research on this and I believe > this is all related to JRA. lolol laughed and said When did you figure > that one out lololol. said I KNEW it was related to my JRA. Problem > was is I need something for it. He asked if there was a Pattern to the pain and > the rash and she thought a minute and said YES. she said when I hurt i can > bet you I have a rash somewhere. He said just what I thought. The Dr said Now > Kids with JRA break out with Rashes. said Yes told him that > she just wanted something to stop the rashes, burning, stinking itching. He > said Ok I am going to do another Biopsy on your next visit. MELISSA said ok > now where are you taking it this time. He said from the back or the butt. > didn;t like that answer lololol. said look doctor. I know with me > agreeing to do these I am helping myself and other kids like me. I am for > that. He said I understand that to. He said I want to know more about the skin > and the effects JRA has on it. He gave her another prescription and said see > you in May or sooner depending if you have a break out before. This Derm Dr is > so cool. > We get out of the Office and was thinking and said Ma you know > that Dr is the only one who really listened to me and want's to help. She said > even though it sounds like I am a guinea pig. I know it's for the best of not > me but the other kids. Then her mind went to the Biopsy and where he's > going to take skin again lololol. She said he better make it where no one can see > it lolol. > The Dr also said She needs to keep up with the Lung Dr also. He thinks > her lungs are affected also. All in All we had a good day. > Robbin > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2006 Report Share Posted April 10, 2006 Those are good ideas Robbin about the pics...maybe you could post some on this site if doesn't mind. (aundrea 10 systemic jra) > > , > I talk with about what's in the Post's here. I also get her > opinion about some of the Questions here. She told the Dr about the Kid's also. > She said JRA kid's get rashes. She will talk about not only her but every Kid > with JRA. Maybe this way with this Dr He will talk with other Derm Dr's to and > see about it. One Voice is all it take to travel along way. > I was sent a Questionaire before this Derm Appointment. Then was asked > about the rash and first signs of it and How long it has been going on. As I > told I am going to take Pictures of it also. So she has to tell me when > it starts then I will do a Day by Day picture of how it get's. Then I will > hand to the Dr as a back up. > Robbin > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2006 Report Share Posted April 11, 2006 In a message dated 4/10/2006 7:50:40 P.M. Eastern Standard Time, Robbin40@... writes: Then her mind went to the Biopsy and where he's going to take skin again lololol. She said he better make it where no one can see it lolol. Hi Robbin: 's got a great sense of humor. It's great that she sees all sides of the pictures. To be able to know it will hurt, but that she can look at it as helping herself and others with JRA..........she's a wonderful young lady! Sounds like you have a great derm. Apparently, they are a rare breed in NH. We can't find any females near us and the wait is longer than in VA. We got Alyssa in yesterday for a couple of moles and a skin tag. He said on a scale of mild, moderate and severe, he'd rate one of hers as possibly severely abnormal, but puts on the return sheet " appointment when available! She can't get in until July 19! Makes me want to scream, IDIOTS it could be cancer take it out NOW! Of course, they are to busy for that, etc., but we all know how quickly something questionable can change:( So today, I will be calling derms more out of the way for an earlier appointment. Have a good one Robbin. Take care. Patty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2006 Report Share Posted April 11, 2006 Robbin - I am so glad to hear that her doctor took the initiative to do some research and is actually listening to ! I'm sorry she has to have another biopsy done, but she is a brave girl! Alia and Caroline, age 4, poly and uveitis ________________________________ From: [mailto: ] On Behalf Of Robbin40@... Sent: Monday, April 10, 2006 6:50 PM Subject: 's Stitches Out Hi All, Hope this finds each with no pain and enjoying this nice weather. and I went to get the Stitch out today and talked with the Dr. He asked if had any new spots and she said Yes. He looked at them and said I am going to have to take another Biopsy. He said not this visit but when you come back to see me in May. said Why another one. The Dr said well I know you have JRA and I did some research on this and I believe this is all related to JRA. lolol laughed and said When did you figure that one out lololol. said I KNEW it was related to my JRA. Problem was is I need something for it. He asked if there was a Pattern to the pain and the rash and she thought a minute and said YES. she said when I hurt i can bet you I have a rash somewhere. He said just what I thought. The Dr said Now Kids with JRA break out with Rashes. said Yes told him that she just wanted something to stop the rashes, burning, stinking itching. He said Ok I am going to do another Biopsy on your next visit. MELISSA said ok now where are you taking it this time. He said from the back or the butt. didn;t like that answer lololol. said look doctor. I know with me agreeing to do these I am helping myself and other kids like me. I am for that. He said I understand that to. He said I want to know more about the skin and the effects JRA has on it. He gave her another prescription and said see you in May or sooner depending if you have a break out before. This Derm Dr is so cool. We get out of the Office and was thinking and said Ma you know that Dr is the only one who really listened to me and want's to help. She said even though it sounds like I am a guinea pig. I know it's for the best of not me but the other kids. Then her mind went to the Biopsy and where he's going to take skin again lololol. She said he better make it where no one can see it lolol. The Dr also said She needs to keep up with the Lung Dr also. He thinks her lungs are affected also. All in All we had a good day. Robbin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2006 Report Share Posted April 11, 2006 , That would be a Great Idea. will not mind. lololol. Unless it's You know lolol Where the bra is lololol. Robbin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2006 Report Share Posted April 11, 2006 Robbin - glad that you all had a good day. How is doing these days other than with her biopsy. Hunter loved the pictures of her with the country stars. She looks all grown up in her graduation picture. Hunter saw Dr. Montgomery today (ish Rite). He thinks she has " temporary asthma " . We will treat it as if it were " real asthma " . He was a good doctor - I am just so tired of all the " what ifs " . I am probably not making since - I have a nasty cold and I am tired. Will contact you soon. Sandi Ken and Hunter (Systemic/Asthma 7) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2006 Report Share Posted April 11, 2006 Hi Alia, How are y'all doing? Did you get to meet Steve and his Family? Robbin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2006 Report Share Posted April 11, 2006 Sandi, Hope the Cold get's better. Maybe it's allergies with this Georgia weather it's possible. Wish we could have met when y'all were here. and I sat around for 2 hours waiting on our ride. lolol. We talked about what that Derm Dr told us. Kinda funny. I could have gotten home quicker on the Marta Train than just waiting on that ride lolol. When is your next appointment? Robbin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2006 Report Share Posted April 11, 2006 Sandi, Tell Hunter ... got the new Rascal Flatts CD for her Birthday today. She is upstairs listening to it. I listened to it and it has some good music on it. Did y'all watch the CMT Awards last night? Robbin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2006 Report Share Posted April 12, 2006 Yes we watched it - Hunter lives for country music. She bought the CD herself - counted out all her nickel and dimes - got Daddy to give her " real money " and went to Walmart and got it. I love the Country sang backwards song. She is sleeping right now - another day of school missed. I hate this disease. We will be back in Atlanta on the 20th. Will write more later Sandi. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2006 Report Share Posted April 13, 2006 Alia, Yes, Steve said he will be attending the AJAO. Can't wait to see everyone then. Robbin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2006 Report Share Posted April 13, 2006 Hey Robbin - Yes, we met him briefly. Very nice. We didn't get to speak with anyone for any lenght of time. It was crowded and very rushed... He said he was going to AJAo so hopefully we'll talk more then! Alia and Caroline, age 4, poly and uveitis ________________________________ From: [mailto: ] On Behalf Of Robbin40@... Sent: Tuesday, April 11, 2006 9:26 PM Subject: Re: 's Stitches Out Hi Alia, How are y'all doing? Did you get to meet Steve and his Family? Robbin Quote Link to comment Share on other sites More sharing options...
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