Finally saw Rheumatology and back on Pred :(

[Twiggy930]

Haven't started a thread for a while so I will give a quick update. My son has been unable to bear weight on his leg for 3 months now. He has had an xray and been seen by ortho and they have ruled out avascular necrosis. Waited for a while to see if it would heal. Started physiotherapy. Got shiny new bright green forearm crutches. Still not better. While at a GI appointment I asked them to refer my son to rheumatology, they did but the appointment we got was in OCTOBER! So I have been on a mission to find a way to get him seen by rheumatology sooner.

In my quest to get an earlier appointment date we got referred to a pediatrician. Went to see him and he took the history and looked at the file and said... "What you need is an enforcer to keep all these specialists in line. I can do that for you." (I may be in love :ybiggrin. He then got rheumatology on the phone and we had an appointment 2 days later!!! I am soooooooo happy to have found this pediatrician.

So went to rheumatology and they said that my son has inflammation in his muscle and tendons that surround the hip joint but the inflammation is not in the joint itself. They still treat it like arthritis. So they have put him back on prednisone and started sulfasalazine. I pointed out that the leg issue started while he was on 35 mg of prednisone and that he tried Pentasa (sulfasalazine gets metabolized to 5-ASA) but the rheumatologist still wants to give it a try. He also told us that the pred should work, and work well, within a week and if it doesn't to call and we can revisit the plan. So he is back on a short course of pred

 

[Sascot]

Your poor boy, must be so frustrating for him not being able to walk! Wow, your new paediatrician sounds fab :ybiggrin:, it is so great when they actually try to help! Sorry he's back on the Pred - hope this starts to help soon. At least it's a plan and they will change it if it doesn't help. Best of luck!

 

[crohnsinct]

YAY NEW PED!!!! Our ped does the same for us and she is my new BFF!

Sorry he has to go back on a med and one that didn't work but at least you now have people paying attention and working on it. I hope it sorts itself out quickly!

 

[my little penguin]

SOrry about the pred- are u sure we don't have the same kiddo.

Hope it works this time.

 

[Twiggy930]

He is already walking WAY better. Even climbed some monkey bars at the park and rode his bike a short distance! I can't believe it!!! I hope it continues.
:dance::dance::dance::dance::dance::dance:

 

[my little penguin]

:yoshijumpjoy::yoshijumpjoy::yoshijumpjoy:

Great to hear

 

[Tesscorm]

:mario2: Wow!!!!! What great news!!!! :mario2::mario2:

 

[crohnsinct]

GET OUT!!!!!!! That is amazing! I am hoping and praying (and you know I am going to be doing a lot of that on my mission trip) that it only gets better and better!

 

[DustyKat]

Yeehaw!!! I am so happy that you have a fab paed in your corner!!!

Is the Pred still weaving its magic??? Hoping and wishing it is!

Dusty. xxx

 

[Mom2oneboy]

The new ped sounds awesome! I'm sorry S has to go back on the pred but so glad to hear it's relieving some of the pain. Praying things continue to improve!!

 

[Twiggy930]

So far the pred is still working out well. He has been on it 1 week and is now completely off his crutches and barely limping, although the leg gets tired easily. This past week was his first week of summer vacation so the increased mobility has come at a good time. The icky pred side effects are starting to show up, he has insomnia, flushing, sweats, and his poor cheeks are getting swollen again. We started the taper yesterday so hopefully the side effects won't last too long. His energy levels still aren't what they used to be and he still gets a sudden and overwhelming feeling of being unwell where he looks pale and awful but hopefully that will start to ease soon. Looking forward to having a good and relaxing summer.

 

[Sascot]

That's grea that he's off the crutches. Hope he feels well and has a great summer.

 

[DustyKat]

Sending loads of luck and well wishes for a relaxing and well Summer!...

Dusty. xxx

 

[crohnsinct]

More good news and progress. Hoping it just gets better and better!!!!!

 

[momoftwinboys]

Great news about the new ped. Awesome news about the change in the leg symptoms. Hope he enjoys his summer break and goes back to school with lots of good fish stories. Hope the taper is smooth sailing

 

[Twiggy930]

Argh!!!!!!!!!!!!!!!!!

He felt so good yesterday it was fabulous! Walked to the store for a slurpee with some friends, rode his bike, even tried running! We ended the day at a neighbor's house and my son was enjoying their trampoline until... he wrenched his back! :voodoo:

He is now in agony again. :hallo3::hallo3::hallo3:

Seriously, when will this all end.

 

[dannysmom]

Hi ... I hope the back pain goes away soon. I was happy to read about your new ped. It is simply fabulous to have a dr help coordinate the specialists!

 

[crohnsinct]

Stupid Trampoline!:voodoo::voodoo::voodoo:

I hope it is just a simple injury and it clears up super fast!

 

[DustyKat]

Oh no Twiggy! I hope it is nothing serious and your boy is soon feeling on top of things again...:hug:

Good luck!

Dusty. xxx

 

[Tesscorm]

OMG, poor kid! What rotten luck!! I hope it's just a minor injury and he's back to running and biking in a couple of days

 

[Catherine]

Hopefully the set back is short term only.

 

[Mom2oneboy]

Oh, no!! He has to be feeling like the world is against him :-(. I'm hoping this turns out to be minor issue so he can get on with enjoying his summer. (((hugs to you both))))

 

[Twiggy930]

Thanks for all the well wishes.

It looks like his back is getting better quickly. Holy moly I was worried!!!! I think I will steer him clear of trampolines for the rest of the summer!

 

[crohnsinct]

Well then..the good news is he got hurt like a normal healthy kid. YAY that he was able to play like a normal kid and double yay that the back is getting better!!!!!!!!! Never thought I would see the day I was glad to see a trampoline injury:ywow:

 

[Catherine]

That's a good point, he was well enough to get injury and is getting better.

 

[Sascot]

Glad his back is getting better! I know what it's like - poor Andrew hasn't been allowed to do much since his op on the abcess. Just starting to get out and about with friends again. I always send him off with a warning not to hurt himself :ylol:
We are off on holiday on Sunday - Andrew went off with friends to play football a couple days ago - I was even warning his friends not to trip him up or tackle him. Could just imagine trying to get on an airplane with crutches - :ysmile:

 

[Farmwife]

I glad to here he is doing better.
I hope Grace gets good results when she sees one. We just have to figure out which spec. to see. Not a bad spot to be in.

Farmwife