Just want to vent.

[araceli]

After 3 days of being nervous and scare due to my daughter having belly pain and gas, finally she feels better. Yesterday my son called me from school, he had stomach pain and loose stools, I picked him up.
He was put on celebrex for his joint pain about a month ago, it gave him just little relief. He already tried everything for pain so I don't know what else the Doctor can give him. We are going to pain clinic in 2 weeks. Anyway, yesterday and today with the belly pain and loose stools, his joint pain sky rocket, back, neck, coccyxs, rib sides, right side under rib cage. He feels better today about his belly but worse about his joints.:confused2::confused2::confused2: I don't know what else to do or where to go to take his pain away, even that sometimes is just a 3 on the pain scale and it never reach a 9 or a 10. It is crazy that he is always in pain.

 

[Clash]

Hugs!!!:ghug:

 

[Maya142]

Have you seen a pediatric rheumatologist araceli? You son's symptoms sound a lot like my daughter's and she was about his age when she was diagnosed with spondyloarthritis. She tried Celebrex and many other NSAIDs before finally settling on Mobic, which is one of the few that helped her pain and didn't make her too nauseous. Maybe trying a different NSAID would help?

 

[araceli]

Maya, Yes he went to a Pedi Rheumy in Dallas, did all kind of tests, everything comes negative. GI did a colo/endo due to constipation problems, his joint pain and his sister's history. biopsies show granulomas consistent with Crohn's. But since he does not have any positive blood test and no other symptoms we don't have the diagnosed yet. Unofficially he has early crohn's and Ibd associated spondyloarthropathies. Both GI and Rheumy think that sooner or later he is going to show more symptoms. He does not have inflammation markers. Anyway he has been prescribed all kind of NSAID's that don't work for him, but prednisone does. Of course they will not put him on prednisone for long. I know is very confusing. yesterday he had very loose stools and today he has not been able to have a movement, only 3 little pieces the size of dime, which tells me his gut has a lot of inflammation. Called the GI and he is out for family emergency. I will look into mobic. Thanks for the info. One question, if you don't mind. How do they diagnosed your daughter with AS. Is she HLA B 27 positive?

 

[Maya142]

She is HLA B27 positive. My husband has AS which is probably why we got the diagnosis so quickly. Her ESR and CRP are never elevated, even when her joints are red and swollen.
However her MRIs did show inflammation in her sacroiliac joints when she was 14 which is one of the things they look for, she was then diagnosed with spondyloarthropathy.
She was officially diagnosed with AS until this year when her MRI showed that her sacroiliac joints where fusing (called "ankylosis" I think). I think it's quite rare to have fusion at her age.
NSAIDs do help her to some extent but she absolutely needs to be on a biologic. We've tried all three approved for spondyloarthropathies (for kids) - Enbrel, Humira and now Remicade. They completely change her quality of life.
One another thing- of all the NSAIDs we've tried, she's only been able to tolerate one. I think we tried like 7 before we settled on Mobic. So don't lose hope if Celebrex isn't working for your son yet! You may just have to try a couple more.
Good luck!

 

[araceli]

Thank you very much for all the info. I have read a lot about AS and I know is hard to diagnose especially if you are HLA negative, but a small percentage can have the disease anyway. He did use mobic for about 15 days. Probably we should give it a chance longer. I really hope your daughter keeps improving. Right know is like we know whats wrong but waiting to have some test to support the diagnostic. Rheumy talked about Remicade but since it is a anti inflammatory drug and he does not show inflammation, they don't have support to prescribe. THANKS

 

[kimmidwife]

Araceli,
Celebrex kills my stomach and gives me horrible diarrhea. Maybe that is what is upsetting his stomach? I personally can't take any NSAID drugs. We were also told that people both Crohn's should not take NSAIDs. Maybe they need to change him to a different medication for his joint pain.

 

[Devynnsmom]

((((hugs))))) my daughter always seems to have some kind of pain too. If its not her tummy, its her joints.

 

[araceli]

Thank you all for your support. I am very hopeful that the visit to the kids pain management clinic is going to bring some answers and relief to my son. I will let you know how it goes. Thanks again and I hope that all our kids get better soon.

 

[Devynnsmom]

(((hugs)))) I hope so too!