Guest guest Posted January 15, 2008 Report Share Posted January 15, 2008 I received a call this evening from the head of our local EDS foundation. She is the friend of a friend. I shared with her our experiences with the rheumtology and pain clinic departments at our Children's hospital. She shared with me that this is the fourth similar experience she has heard in the last three months. She is also extremely involved in our local AF chapter and founded our local EDS foundation. She listened sympathetically to my story about Hannah (I was proud of myself for not losing it as I often do when I talk about Hannah like this). She is going to personally make some calls on our behalf and see if she can get me some names of doctors who would be willing to take on Hannah's challenging case (she said she contacts in Madison, Cincinnati & St. Louis). She agreed that Hannah is definitely not textbook. In fact she said Hannah sounds very similar to her own situation. She was diagnosed with EDS at the age of 29. It angered her when I told her that the pain clinic tried to tell us it " was in Hannah's head " and that I did not appreciated the doctor's egos in those departments. So, I will keep you all posted. On a side note, we are California bound, we bought our airline tickets on Sunday! Beth & Hannah, 11, unspecified arthritis; hypermobility; asthma; gerd; migraines Sending prayers & happy thoughts, Beth :-) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2008 Report Share Posted January 15, 2008 Beth, I hope that you will finally get connected to the doctor that can properly diagnosis/treat Hannah. That's wonderful you have purchased your tickets for the conference! Did you decide if all of you are coming? Hope Hannah is doing okay. (, 17, poly, cvid, migraines) Beth Yohnk <yohnkmom@...> wrote: I received a call this evening from the head of our local EDS foundation. She is the friend of a friend. I shared with her our experiences with the rheumtology and pain clinic departments at our Children's hospital. She shared with me that this is the fourth similar experience she has heard in the last three months. She is also extremely involved in our local AF chapter and founded our local EDS foundation. She listened sympathetically to my story about Hannah (I was proud of myself for not losing it as I often do when I talk about Hannah like this). She is going to personally make some calls on our behalf and see if she can get me some names of doctors who would be willing to take on Hannah's challenging case (she said she contacts in Madison, Cincinnati & St. Louis). She agreed that Hannah is definitely not textbook. In fact she said Hannah sounds very similar to her own situation. She was diagnosed with EDS at the age of 29. It angered her when I told her that the pain clinic tried to tell us it " was in Hannah's head " and that I did not appreciated the doctor's egos in those departments. So, I will keep you all posted. On a side note, we are California bound, we bought our airline tickets on Sunday! Beth & Hannah, 11, unspecified arthritis; hypermobility; asthma; gerd; migraines Sending prayers & happy thoughts, Beth :-) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2008 Report Share Posted January 15, 2008 I have no time to chat, but I am excited you are going to CA too!!!! Talk more on the other part tongiht............hugs n and Holly (14) Systemic jra since 9/94 **************Start the year off right. Easy ways to stay in shape. http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2008 Report Share Posted January 16, 2008 Sounds Terrific!!! MAybe you should email the people on that show " Mystery Diagnosis " ... It might help people in the future. Maybe one day... who knows. Hope that I will see you all at AJAO since I live in San Diego! LOL.. Issadora On Jan 15, 2008 8:13 PM, nancy barnes <nancyb315@...> wrote: > Beth, > > I hope that you will finally get connected to the doctor that can properly > diagnosis/treat Hannah. > > That's wonderful you have purchased your tickets for the conference! Did > you decide if all of you are coming? > > Hope Hannah is doing okay. > > (, 17, poly, cvid, migraines) > > Beth Yohnk <yohnkmom@... <yohnkmom%40sbcglobal.net>> wrote: I > received a call this evening from the head of our local EDS foundation. She > is the friend of a friend. I shared with her our experiences with the > rheumtology and pain clinic departments at our Children's hospital. She > shared with me that this is the fourth similar experience she has heard in > the last three months. She is also extremely involved in our local AF > chapter and founded our local EDS foundation. > > She listened sympathetically to my story about Hannah (I was proud of > myself for not losing it as I often do when I talk about Hannah like this). > She is going to personally make some calls on our behalf and see if she can > get me some names of doctors who would be willing to take on Hannah's > challenging case (she said she contacts in Madison, Cincinnati & St. Louis). > She agreed that Hannah is definitely not textbook. In fact she said Hannah > sounds very similar to her own situation. She was diagnosed with EDS at the > age of 29. It angered her when I told her that the pain clinic tried to tell > us it " was in Hannah's head " and that I did not appreciated the doctor's > egos in those departments. > > So, I will keep you all posted. On a side note, we are California bound, > we bought our airline tickets on Sunday! > > Beth & Hannah, 11, unspecified arthritis; hypermobility; asthma; gerd; > migraines > > Sending prayers & happy thoughts, > Beth :-) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2008 Report Share Posted January 16, 2008 Oh Beth, I am so happy for you. I hope that she will be able to help you decide what direction to go. It is a shame that there are so many others who have been treated in this manner at your local hospital. Its a sad commentary on the state of our medical system. I am also so glad to hear that you are California bound!! Wish I could go as well...I have dreamed of going as a volunteer one of these days... Keep us posted on what you find out! Glad to hear a bit of good news. and Rob 18 JAS interesting phone call > I received a call this evening from the head of our local EDS > foundation. She is the friend of a friend. I shared > with her our experiences with the rheumtology and pain clinic > departments at our Children's hospital. She > shared with me that this is the fourth similar experience she > has heard in the last three months. She is also extremely > involved in our local AF chapter and founded our local EDS foundation. > > She listened sympathetically to my story about Hannah (I was > proud of myself for not losing it as I often do when I talk > about Hannah like this). She is going to personally make > some calls on our behalf and see if she can get me some names of > doctors who would be willing to take on Hannah's challenging > case (she said she contacts in Madison, Cincinnati & St. > Louis). She agreed that Hannah is definitely not > textbook. In fact she said Hannah sounds very similar to > her own situation. She was diagnosed with EDS at the age > of 29. It angered her when I told her that the pain clinic > tried to tell us it " was in Hannah's head " and that I did not > appreciated the doctor's egos in those departments. > > So, I will keep you all posted. On a side note, we are > California bound, we bought our airline tickets on Sunday! > > Beth & Hannah, 11, unspecified arthritis; hypermobility; asthma; > gerd; migraines > > Sending prayers & happy thoughts, > Beth :-) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2008 Report Share Posted January 16, 2008 i understand completely about trying to keep composure. we see a dr a childrens in cincinnati, caleb has been sick nearly 3 months we have no answers. now they are back to thinking its canecer again. after we got a diagnosis lasy week of systemic that they are not sure of now. caleb has to see hemog again, have another bone scan and another bone marrow biopsy. i totally feel the same way. > > I received a call this evening from the head of our local EDS foundation. She is the friend of a friend. I shared with her our experiences with the rheumtology and pain clinic departments at our Children's hospital. She shared with me that this is the fourth similar experience she has heard in the last three months. She is also extremely involved in our local AF chapter and founded our local EDS foundation. > > She listened sympathetically to my story about Hannah (I was proud of myself for not losing it as I often do when I talk about Hannah like this). She is going to personally make some calls on our behalf and see if she can get me some names of doctors who would be willing to take on Hannah's challenging case (she said she contacts in Madison, Cincinnati & St. Louis). She agreed that Hannah is definitely not textbook. In fact she said Hannah sounds very similar to her own situation. She was diagnosed with EDS at the age of 29. It angered her when I told her that the pain clinic tried to tell us it " was in Hannah's head " and that I did not appreciated the doctor's egos in those departments. > > So, I will keep you all posted. On a side note, we are California bound, we bought our airline tickets on Sunday! > > Beth & Hannah, 11, unspecified arthritis; hypermobility; asthma; gerd; migraines > > Sending prayers & happy thoughts, > Beth :-) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2008 Report Share Posted January 16, 2008 Hi : Hannah is doing ok. Still having lots of joint pain and has had a chronic sore throat since Thanksgiving. I'm sure it's viral because she's had 2 negative strep tests. We'll just add it to the list. I think our next step will be a genetics doctor. We'll have to see what Lynn (that's the person who called me last night) comes up with for us. We have decided that all of us are coming. Midwest Express was having an airfare sale over the weekend and we were able to get good rates and flights that allow Mike to use his free frequent flyer ticket, so we only paid for three tickets. Jay also wants to come. He is really interested in meeting kids his age with arthritis. He thinks some day he wants to work with special needs kids and I think this would be a good experience for him too. How are all of you, including your mom? Beth & Hannah, 11, unspecified arthritis; asthma; gerd; migraines Sending prayers & happy thoughts, Beth :-) Re: interesting phone call Beth, I hope that you will finally get connected to the doctor that can properly diagnosis/treat Hannah. That's wonderful you have purchased your tickets for the conference! Did you decide if all of you are coming? Hope Hannah is doing okay. (, 17, poly, cvid, migraines) Beth Yohnk <yohnkmomsbcglobal (DOT) net> wrote: I received a call this evening from the head of our local EDS foundation. She is the friend of a friend. I shared with her our experiences with the rheumtology and pain clinic departments at our Children's hospital. She shared with me that this is the fourth similar experience she has heard in the last three months. She is also extremely involved in our local AF chapter and founded our local EDS foundation. She listened sympathetically to my story about Hannah (I was proud of myself for not losing it as I often do when I talk about Hannah like this). She is going to personally make some calls on our behalf and see if she can get me some names of doctors who would be willing to take on Hannah's challenging case (she said she contacts in Madison, Cincinnati & St. Louis). She agreed that Hannah is definitely not textbook. In fact she said Hannah sounds very similar to her own situation. She was diagnosed with EDS at the age of 29. It angered her when I told her that the pain clinic tried to tell us it " was in Hannah's head " and that I did not appreciated the doctor's egos in those departments. So, I will keep you all posted. On a side note, we are California bound, we bought our airline tickets on Sunday! Beth & Hannah, 11, unspecified arthritis; hypermobility; asthma; gerd; migraines Sending prayers & happy thoughts, Beth :-) Quote Link to comment Share on other sites More sharing options...
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