- This topic has 7 replies, 3 voices, and was last updated 16 years, 1 month ago by
.
-
Posts
-
Old-timers, I know you are familiar with my pattern. Newbies, feel free to ignore my rambling LOL, sometimes it just helps me to write it out.
My daughter has an appt. with the ped rheum in a few weeks. Last visit, he said he would buy us both lunch if her arthritis was gone by this visit. That sarcasm was directed at me, but she came home that day thinking we had a lunch date. Even had her big sister begging to come along. Sigh.
So of course her arthritis is not gone, not that I expected it to be. Stable still best describes things. We are fine with stable. We like stable. Wait, though, he told me “Stable is not stable” one time. So you see what I am up against.
Remember awhile ago when I posted about meeting a grandmother at my daughter's dance class? She knew a little boy with JRA, who sees the same ped rheum we do. She could not believe how well my daughter is doing, and thought she must have a mild case (dx is severe poly JRA).
After speaking with her, I couldn't understand why the boy wouldn't be on Enbrel, as we are constantly told is necessary for our daughter. She knew about the gallons of Motrin and joint injections, like we had started with. I wondered why the parents hadn't moved up the ladder, if the boy was still suffering so much.
It turns out a friend of mine had him in a preschool classroom. I felt much better when she said she couldn't tell anything was wrong with him, on the days he came to school. Key words – “on the days he came to school”. I assumed he started Enbrel or something, and was having some good days. She said about every two weeks, he would miss three or four days.
(On Zith, my daughter hasn't missed any school except for a fever and dr. appts. – and she goes to a fullday program.)
I saw the grandmother again this weekend. I told her it sounded like the boy was doing better, from what my friend said. She was very surprised! She said, “Couldn't she tell that he limped?” I said I didn't know, and if my daughter's wrist was a knee or ankle, she would limp, too, from damage done while we waited for a dx.
Then what she said broke my heart: “Even on the days he was able to go to school, at night all he could do was whimper in pain. His parents just gave up trying to do anything because nothing helped and it just became their routine that his dad would hold him and let him whimper and moan.”
You know what I think? I think what my friend saw is like what the ped rheum sees. I think my friend saw a happy little boy when he was in her class, like she sees my daughter as a happy little girl.
I think the ped rheum does a joint count and exam, and in that short time, my daughter looks just like the little boy does to him. He probably thinks they are the same.
He doesn't see either patient, at home at night. My daughter, dancing from room to room or chasing her big sister. The little boy, whimpering in his father's lap.
I don't think my husband realized how different our lives would be without AP, until he heard this story. It really affected him. He has been supportive, but I think he thought she would be the same on traditional meds, too, “or why would they prescribe them”.
Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.
Oh, Suzanne, your note brought tears to my eyes. How helpless to have a child in such pain. I wouldn't wish my worse days on anyone, espeically children.
Are you going the AP route for your child? As I have said on other topic posts, I have found rheumatologists to be the worst people to help–I got diagnosis from one and fled for my neurologist, who was at least sympathetic. Then I found the Roadback Foundation and strong-armed one rheumy into writing the script. Once my results started showing up in much better blood test results, my GP and neurologist looked astonished, and said, “Whatever you are doing, keep doing it” and continue to write the scripts.
We all do what we are told and the “right” things for our children, following the doctors. Then we learn the truth–medicine is an art, not a science. If the doctors who think they're “God” won't help, we have to find our own way.
Please keep us all posted on avenues to help your child.
Thanks, Dena, and yes, my daughter is on AP.
It is not easy at all to find a doctor willing to treat a very young child, so we have traveled quite far twice to see AP drs. (the first retired). Local pediatricians are supportive, but are clearly nervous about interfering with a specialty. So we have stayed with the ped rheum because we need someone closer who knows her history, etc. The wait to see a ped rheum can be months, so it is to her benefit to stay in the 'system' there. We 'never say never'; if the time came when she needed Enbrel, he's very experienced with using it.
And, even though he does not believe in AP, he told me he is always willing to see her, no matter what. (This visit will still be a 'no matter what' visit LOL).
Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.
Oh Suzanne,
I feel for you and your daughter. It certainly isn't easy but you are doing the right thing. Last week I watched a 20/20 and there was a story about a woman who had a fishy smell and I thought of your daughter (wasn't it you who told us about the fish odor on clothes)? Anwyay, this poor woman had to quit teaching little children because she could not bear the comments about her smell. Now, I know your daughter's smell was short-term, or at least, that's what I presume and remember.
Anyway, you are being pragmatic and diplomatic, but your story reminds me somewhat of the children I used to work with with ADHD or sensory integration disorder. Some kids could hold it together at school but when they got home they would be a mess, behavioral problems, tantrums, etc. would ensue. They would lose it at home. Parents were seeing a different child compared to teachers. Same thing with physicians. The DSM now states that ADHD diagnosis has to consider different contexts and be observed over certain periods of time. I think the full effects of a disease like JRA has to be considered similarly; the effect of the disease has to be considered throughout one's daily routines. What do you think?
I see my local rheumy who has a terrible bedside manner because he's more convenient. He has the nerve to put his hand next to mine and say “Your joints don't look normal.” um, DUUUHHH!Yes, my daughter was the fishy one, but she is fine now. Another dilemma for this appt., I'm afraid. When I told the ped rheum we were going to try fish oil, he was all for it, and even told me where to get it. I just nodded, didn't say we were getting it from the AP dr., because…well, he was all in a snit about that, anyway.
I guess I don't have to say anything, unless he remembers and asks how it is going with the fish oil. If he thinks she looks better, he probably will bring it up, to say that is what helped, not Zith.
Maybe I'll just take the Gummy Fish in. That is all she takes now, and only when she asks. I could take the unopened Carlson's too, and show it to him, like I need to know how much to give her. The AP drs. nurse couldn't answer that for me, so it is a legimate question.
Yes, I agree the effects of the disease need to be considered throughout the day. It is why I get so frustrated with every rheum we have ever seen. Doesn't matter that we never treat for pain, doesn't matter that she is only four but goes to school all day and never naps, doesn't matter that she still uses her worst hand/wrist dominantly (but stopped when she first got sick), doesn't matter that she bops right down the stairs every a.m., dances around all night. They see swelling, she needs the big guns.
Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.
I don't know if this will help but the article I was reading mentioned Juvenile chronic arthritis, saying that there's “the possibility, therefore, that Chlamydial pneumoniae might be responsible for some cases of junevile chronic arthritis” and should not be ignored (Taylor-Robinson & Kent, 2001, “How can a causal role for small bacteria in chronic inflammatory arthritides be established or refuted?”, Annals of the Rheumatic Diseases, Vol. 60).
I think you should ask away – and see how he responds. Good luck!
She's been tested (and tested) for that and more. All negative. “Multiple titers for brucellosis” got her the first round of antibiotic treatment, but that was stopped when no infection was proven.
She's negative/normal for everything – RF, ANA, anti-CCP, HLA-B27. She still has a high CRP though.
The ped rheum will never treat her with AP. It is a teaching children's hospital, she was seen by infectious disease, and they have sent her blood to Mayo more than once. I think he feels confident there is no infectious cause to be found and I'm not beating that dead horse with him any more.
I've got a new Enbrel study that just came out about kids on it for three years. It compares mtx, Enbrel, and mtx/Enbrel. He is adamant that she needs Enbrel, so my questions are going to be about this study – he should be able to show me or explain to me why it will help her more than Zith is. He has his work cut out for him.
Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.
The topic ‘ overthinking everything’ is closed to new replies.