My daughter who is ten,I posted that she may have ra, and grammaskittles posted pictures for me. Well, yesterday she was hurting so bad she was in tears, I called her docs office and they said warm bath, massage and her anti-inflammatory...which she is taking every 12 hrs anyway. We got thru yesterday, and I took her in to their office today. Her temp was 101.2, and her joints very inflamed. The doc was saying possible lupus today, and Haley is scared. She is asking so many questions about auto-immune disorders, another phrase the doc kept throwing out. Haley is very smart, and has read alot of veterinary medicine books as she has horses. So she is familar with some medical terms. She is afraid that she won't be able to ride her horses. She is concerned about long term. And we won't even be able to see a rhemy til June! She is one hurting, scared little girl, and I guess I am venting because she is so afraid and I can't seem to calm her fears.
Ginni
Sorry to hear that your little girl is having such a bad time. I can imagine how scared she must be as its bad enough when we are adults but to a young child it so frightning. Try to keep positive as this will pass on to your daughter, keep her well informed about remissions rather than the long term over all problems. Once she sees the rheumy things will move along and treatment can be started aggresively. My youngest is also a horse rider and the stables we use have a disabled section, there is a boy there with JRA he is 14 and hasnt stopped riding or caring for his horse, he just needs a bit more help than before.He is on the biologics and has been in remission for 6 years now.
Take care and give Haley big gentle hugs I was diagnosed with RA as a teenager and also rode hunter/jumpers. I
did cut back on my schedule initally but was able to return. I was even
able to join my college team.
I am now 30. I have stopped riding recently but that is more in
connection with a serious fall I took back in september. I am planning on
getting up again this summer as soon as I get the dr.'s ok.
Please tell her about all the advancements that are happening. My dr.
actually said that I was "blessed" to have been diagnosed now. There is
so much stuffing coming down the road from the research labs.
Please give her a hug from all of us,
Becky
((Ginni)) I know exactly how you feel and what both of you are going thru. I do feel as others have said that she will be able to ride no matter what her diagnosis is. Many stables do have a disabled section. Also, they have found that horses are great therapy for those that are physically challenged and great improvements in physical conditions have been made.
JRA is treated incredibly aggressively because they are finding the more aggressively you treat JRA, the better the chances are for a remission and a long lasting one. My doc has also said that there are great new meds coming out very soon for RA and for JRA.
In the meantime while waiting on the rheumy appt., answer any questions she has honestly. If you don't have the answer, look it up together online. She will go thru the stages of grief (without even having a firm dx.) and your family will also. It is a huge blow to deal with. It's one thing for us to have it as adults...but something entirely different for your kid to have it. Danielle and I have cried together many times. It does and it will emotionally get better. Call your doc for alternative things you can do for her until you get into the rheumy. If she has localized issues (like her hands) maybe cortisone injections like we did for Danielle to bring her some relief. Warm soaks for her hands and warm baths. Maybe some pred for her also. Also, get in contact with her teachers and let them know what is going on with her. School is almost out and if you can get them to accommodate her until the end of the year that would be great. If not...threaten with 504 Plan right NOW instead of next school year. I will email you more info on that stuff.
I am so sorry Ginni this happened with Haley. I am always open for you to talk with if you need to talk about anything. You have my email addy and my AIM name is in my profile. Please use them if you need to.
How awful you must feel...unable to take her pain as mother always wants to. It is sooo very frustrating not to be able to kiss their boo-boos away.Dear Ginni, yes I feel your pain as a mom, and her's too. Poor little girl! I think the hardest 'test' for us is sorting out these drugs that take so long! I went mad until I got a shot and 3 predisone a day, and am still waiting for the drugs I take to 'work'. (Remicade)
So, it will be important for her to get on something to relieve the pain while she 'has to wait' for the other's to work. I don't know what to tell you....please know I'm thinking about you two. Sarah
Im soo sorry that your little girl has to go through this at such a young age. I couldnt even imagine what she is going through and also what you are going through as a mom. Please know that she will be in my prayers to get some relief and also for you for strength.