Guest guest Posted December 14, 2006 Report Share Posted December 14, 2006 Hi Kirsty, How have things been? Has Devon had another episode? I did some research on systemic jra when we were trying to decide whether to have more children, and somewhere I read that with systemic jra, an identical twin only had a 15% chance of getting it. For other siblings the chance of getting it was even less. I wish I remember where I read that. My daughter's pediatric rheumatologist said that in 15 years of practice he has not had one family with two children affected. Take care. Sophie 's mom, systemic jra, age 6 > > We finally got our first appointment to see a Rheumy on Jan. 19/07. I called and spoke with the nurse to find out what exactly would be happening. She said Devon would get a full exam of each joint, xrays and blood work. If any fluid needs to be drained then we will have to stay a few days and wait for OR time to have it done. She was very surprised that the Ped didn't put Devon on any meds, and with all the symptoms Devon has, she agrees with the diagnosis. She said that since the appointment was so close now, it wasn't worth starting the meds, as they will mask her pain, but when I told her we had been fighting this for over a year she flipped. Wasn't impressed at all. Anyhow, I was wondering if any of you have more than one child with JRA and especially would like to talk with anyone with twins with the disease. Devon is a twin, but they are not identical. Also, her twin has diabetes, so I know the auto- immune thing is there. Although he isn't symptomatic in anyway, what would be his chances of getting JRA as well? > Kirsty > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2006 Report Share Posted December 14, 2006 thanks Sophie. I just was a bit concerned about Jordan, we have had a hard enough time with the diabetes, didn't need anything else on top of it. Luckily, Devon hasn't had anything since October. But that is what usually happens. Then after Christmas she should have a couple more, and then none until summer. Not sure why though. Kirsty Re: Questions please Hi Kirsty, How have things been? Has Devon had another episode? I did some research on systemic jra when we were trying to decide whether to have more children, and somewhere I read that with systemic jra, an identical twin only had a 15% chance of getting it. For other siblings the chance of getting it was even less. I wish I remember where I read that. My daughter's pediatric rheumatologist said that in 15 years of practice he has not had one family with two children affected. Take care. Sophie 's mom, systemic jra, age 6 > > We finally got our first appointment to see a Rheumy on Jan. 19/07. I called and spoke with the nurse to find out what exactly would be happening. She said Devon would get a full exam of each joint, xrays and blood work. If any fluid needs to be drained then we will have to stay a few days and wait for OR time to have it done. She was very surprised that the Ped didn't put Devon on any meds, and with all the symptoms Devon has, she agrees with the diagnosis. She said that since the appointment was so close now, it wasn't worth starting the meds, as they will mask her pain, but when I told her we had been fighting this for over a year she flipped. Wasn't impressed at all. Anyhow, I was wondering if any of you have more than one child with JRA and especially would like to talk with anyone with twins with the disease. Devon is a twin, but they are not identical. Also, her twin has diabetes, so I know the auto- immune thing is there. Although he isn't symptomatic in anyway, what would be his chances of getting JRA as well? > Kirsty > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2006 Report Share Posted December 15, 2006 We have some friends whose daughter is named devon and she is 18. I like it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2006 Report Share Posted December 15, 2006 Thank you, me too. I was born in the County of Devon in England, and that is why she is named Devon. Kirsty Re: Re: Questions please We have some friends whose daughter is named devon and she is 18. I like it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2006 Report Share Posted December 15, 2006 --Kirsty, I was born in Swindon Wiltshire, England. I moved to the states 18 years ago when I married a Minnesotan!! Devon is a beautiful part of the country. I love both Devon and Cornwall. We spent many a summer holiday in that part of the country. hugs Helen and (9,systemic) - In , " Kirsty " <kmccarron@...> wrote: > > Thank you, me too. I was born in the County of Devon in England, and that is why she is named Devon. > Kirsty > Re: Re: Questions please > > > We have some friends whose daughter is named devon and she is 18. I like it. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2006 Report Share Posted December 17, 2006 Very pretty. My Aunt lives in Southampton. We had the opportunity to go back in 2001. My grandmother passed away and left the house to any grandchild who wanted it. With the cost of living over there, and the repairs required on the house, we decided it wouldn't be a good move. I would love to take the kids on a month long holiday to see it all though. Kirsty Re: Re: Questions please > > > We have some friends whose daughter is named devon and she is 18. I like it. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2009 Report Share Posted September 8, 2009 Can LDN be taken with Remicade or Humira? Has anyone ever had Erythema Nodosum while on LDN? What was the cause of your Erythema Nodosum? Did it clear? How soon? It is very painful to me. My Crohns is doing great but this is taking away the fun by limiting my mobility and HURTING bigtime. Thanks in advance, Quote Link to comment Share on other sites More sharing options...
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