Wayney,
I saw your post and I hope everything goes alright with your little one. You are definitely right about knowing that if he has arthritis--you are the best parent to handle it. My son has been lucky--thats how I look at it. At least I know how to handle whatever comes our way.
And on rainy humid days (which bother us the most) we snuggle up on the couch, eat chocolate and watch a scary movie!!! But also I let him do whatever he feels like he wants to attempt. He plays baseball, he is in ice skating class and I certainly let the instructors know about his condition but I am very adamant about him not being treated like a baby.
My mom did that to me and I never attempted anything--I just always was told that I couldn't even try it out. I had to fight her to become a cheerleader.
I promised myself I would never do that to him and so far so good. But I do know his limits and when he gets tired--I just let him reach those points on his own.
And when he does and he comes to me and says he is hurting---then I do baby the heck out of him!!!
Thats when it is snuggle time galore!!!!! I know he will grow up too fast--even though he will always be my baby!!
Sorry I can go on and on about him!! I should say that his older brother loves him to death too and protects him like crazy. He also understands because he knows what it is like when I am hurting-- he hates that his little brother has this disease but we all do alright.
And you will too. I think that its great that you have documented everything. You are already ahead in the game because that is exactly what they ( the docs) will want from you. Keep a close eye on everything. I cannot believe they thought he was just mimicking you!!
That same thing happen to me!! And they said I was paranoid too!! I certainly wasn't with my first son but something was just off and different with Lucas. I could recognize symptons in him that were all too familiar to me.
Don't let them bully you. Mothers intuition is usually dead on. That should be a medical profession !! hee hee!!
Good Luck--sorry this was so long. It was too close to my heart to not respond to your post.
Keep me updated on what happens. I will be thinking about the two of you!!
MarcyI just wanted to say that I am so touched by what you wrote. I
will have to respond a bit better in the morning as I am half out of it
right now....so sleepy.
hugswayney
Ok, all rested and now ready to respond..if my internet connection lets
me. My mom never pushed me but did let me do what I thought I
could. The main thing she outlawed was bike riding...or learning
to ride a bike. My Dad tried teaching me but it was right after I
was diagnosed and I remember it hurt like crazy. I always
was worried about falling off and causing more pain. So Mom
finally told him to give it up.
I was also pulled from gym classes in middle and high school. The
teachers weren't ready to adapt for me and my docs were adamant that I
only do certain things. In middle school I had to go to the
classes and sit on the side lines. Until the teacher hit on the
idea of making me do laundry for him. Lucky me...my grade was
based on the ability to wash, dry and fold gym towels. In high
school, they let me work in both the library and guidance offices to
replace the gym class. That was much better.
So I definitely do not want him held back at things. One
person I spoke to looked at it this way, by doing the right thing and
getting a dx and treatment, I'm almost opening him up to a lable in
school. And I well remeber that. It's not easy being
different. But on the other hand, if we don't put emphasis on
that lable, then who needs to know other than teachers and all.
Even now, if all Bastian wants to do is hang out and watch TV, I let
him because I know he may be in pain but not verbalizing it. He's
sure got the grumpies that I get when I'm in pain. So, while I
haven't documented that part yet, I will. He's also got the sleep
issues. And yesterday, just on a whim, I touched some of the
fibro tender points. He said they hurt, but when I touched them later,
they didn't. I was just curious about that.
Well, only 8 more days to wait. If nothing comes of this appt or
I get treated like I am crazy....y'all will hear one big huge rant!
hugs, wayney
I just posted on the other one about my son, then he comes in from school crying his knees hurt and its not even damp today, too much running about maybe? just soaked in a bath and now vegging in front of tv, like you say, the grumpiness is there but i'd never thought about that, he was miserable as sin this morning, crying at everything, so i guess that could be the reason, although my brain the way it is was sure he was just out to get me
I can't believe that you had to do laundry for a grade,
I sympathize with you moms. My daughter started having shoulder problems at the age of 10, she even cried on the way to pick out a new puppy. That incidence made me set up an appt with an Orthopod to have her checked. He found out she had scoliosis of the spine and had no interest in her shoulder pain.
Barb
Cris well as if i haven't wasted enough time in appointments like that one!! Apparently there is nothing they can do about childhood arthritis, even if it was diagnosed so there's little point in putting him through blood tests at 5 if nothing to be done anyway. prods and pokes his knees and says they seem fine to me, i explained that they weren't yesterday!! His answer was well if your arthritis is as bad as you say, then you would know that if his knees were so bad yesterday that he cried every time he stood up, there's no way they could be ok today!! I said really?! could you tell my joints to behave like they should then?? He doesn't even believe that his knees were that bad yesterday, and said if he's only moaning about his knees then it probably isn't arthritis and to be honest he doesn't think it is(for about the 100th time) I don't know whether to be pleased he doesn't think it is, or scream WHY AREN'T YOU LISTENING TO ME??? He said to carry on writing down when he's bad (although i can't see much point!)<his words. I told him my rheumy had said to get him checked out and the previous GP had started the ball rolling just before we moved, he said i can't see why they would waste time doing it, there's no point with children!!
So now i think all i can do is wait the possibly 6 months till my appt with new rheumy is through and ask them what they think i should do. I hate the british medical system!!! Tori; That doctors a dumbass!! (sorry for my language you guys) Tori, Go to the Arthritis Foundation, USA, website. Down the lt side of the page you will see a boy and Juvenile Arthritis. Click here. Your GP does not keep up with the newest treatments. Children are given the same medications as we are, trying to avoid joint damage. Good luck to you and your little one. Barb
What a total idiot that guy is. If you were'nt so far away I might think it was the same guy Oscar saw last week. What a Pr_ck!! Sorry but that just makes me sooOOOooo
I'm sorry you had this awful experience. What does he know about the pain and how long it does or does'nt last at any given time. No treatment for a children.....HELLO, what about damage control?? It's hard to believe that this is what you get, for all the schooling and training a Dr goes through to come out not knowing SCHMOTZ is just a waste. You are a wonderful mom doing research, trying your hardest to take care of the love of your life and you come up against Dr's that not only know nothing about the situation, but act like they do and are mean on top of it. I think it could be time for that Voo Doo doll!! I'll be thinking of you and watching for your updates, Pam
Voodoo doll hey what an idea! If we stabbed joint areas then maybe they'd have some idea?? Sorry thats probably just my-its 6am and i didn't fall asleep till after 1am, been awake since 5am and woke twice in between head talking
That gym class thing is all too familiar. I worked in the high school office instead of taking gym!! Its really too bad you had to do laundry. I know having a label at school is quite difficult at such a young age. That is one of my biggest fears--that Lucas will get teased. Because my school years were a horror story!! Kids were so mean to me!!! To this day I actually remember their first and last names!!! Thats what kind of impact it made on me. And I am definitely the kind of mother that would not take too kindly to another child making fun of mine. I would bring the issue directly to their parents--thats for sure. I had to suffer alone when I was getting made fun of--my mom had way too many other issues in her life to actually help me out. ( boy-- but thats another website support group!!! HA! HA! )
I also somtimes think about the fibro thing and tender points. Lucas's rheumy told me that kids at that age cannot get fibro. But I am not so sure I believe her.
But I also hope that he isn't just hearing me when I complain like you said. Although I've never actually said to him that I have fibromyalgia--he just thinks its all the arthritis. Who knows. But there was some one else that posted something about their kid and checking tender points--so I wonder.
I sure hope that kids cannot get fibro too. My little one has enough on his plate.
Anyways thanks for you response and I hope everything works out for you and your son.
Like I said before--keep me updated. Lucas is fascinated when I tell him that there are other kids like him. Sometimes I know he feels like he is the only kid with this. He met a boy one time at the hospital that had it really really bad--much worse than Lucas and as much as he felt bad about the another boy--he got a little scared too--that his would get that bad.
Its just a tough thing when your that little--as we both know. I was the only kid with arthritis in my state so all the doctors would have classes around me when I came in for my appointments!! I felt like a rat in a lab. It wasn't a common thing back then. Un fortunately it is now.
Take care,
Marcy
hugs,
wayney
good idea wayney, i'll look up some stuff now anything anyone thinks would be useful will be gratefully recieved. I think he must have gone to the same school as the doc who told me i probably didn't have arthritis and there was little point in giving me the depo medrone injection!http://kidshealth.org/parent/medical/arthritis/jra.html
http://tinyurl.com/cngtw
http://mywebmd.com/content/article/104/107559.htm
http://www.goldscout.com
http://www.hss.edu/Conditions/Juvenile-Rheumatoid-Arthritis
Ok, here are some links I've found. Some of them may be older
articles (the HSS one in particular) but I've found it is decent basic
info.
Re: the gym teacher who made me do laundry....he was a major
jerk....creepy too. seemed to have a looking problem at
females. although no reports of anything more than having an
appreciation for staring at times. and oddly...outside of
school....not so creepy or as big a jerk...my best friend was his
neighbor. i didn't mind the laundry as much as being bored.
no point in studying as i was caught up in classes. and in high
school...i loved the library and guidance office work.
re:fibro in kids...
http://www.sover.net/~devstar/rheum.pdf
it asks the question who gets fibro....
http://www.thepaincenter.com/risk_fibromyalgia.htm
discusses fibro and heredity and juvenile fibro.
http://www.angelfire.com/on/teenfms/teenfms.html
is a site by a teen with fms...it hasn't been recently updated but....contains some info.
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