Experience with Ankylosing Spondilitis Onset

Rita Community Member October 29, 2009
  • Hi, My son who is 13 was recently diagnosed with having a gene for SA but Rheumy said it does not mean that he will get it.  However, he has been experiencing RA symptons in his hands and feet along with back pain and weakeness in his legs.  It appears that it maybe the onset of AS? From what I have read it's difficult to diagnose RA in children. the tests come back negative.  He has complained of backpain since he was about 5 years old and doctors said there was nothing wrong as he got older he was sent for physical therapy.  It seems that now as he is going thru puberty and the hormonal change may have set it off?   Also he is lactose intolerant and when he has certain foods that have dairy products or processed foods/junk food it sets it off and he has flare ups.  Can anyone share their experience with having AS and what it was like as the onset of it?

    Thank you Blessings Rita    

7 Comments
  • Butterfly Warrior
    Nov. 16, 2009

    Okay, just a little tizzy of mine.. I have to say.. it'sJuvenile RA.. not RA... believe it or not, besides age, there IS significant differences between adultonset RA and Juvenile rheumatoid arthritis... now called Juvenile Idiopathic Arthritis. Their are 3 main subcategories in JIA and then some. With Juvenile AS.. which is very rare... it can be complex to ...

    RHMLucky777

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    Okay, just a little tizzy of mine.. I have to say.. it'sJuvenile RA.. not RA... believe it or not, besides age, there IS significant differences between adultonset RA and Juvenile rheumatoid arthritis... now called Juvenile Idiopathic Arthritis. Their are 3 main subcategories in JIA and then some. With Juvenile AS.. which is very rare... it can be complex to  dx. any rheumatic disease. it's IMPORTANT to see aPediatric Rheumatologist and I know they are a rare breed but adultrheumatologist are TERRIBLE at dx kids. I have had JRA since I was very young and now im 32.. it'sSTILL called JIA.. just b/c im an adult doesnt change the dx to RA. I find that most adult rheumatologist I have seen are not great at dealing with young adults with this disease so that'sakey factor.

     

    I haveto say that I carry a LEgene... Lupus Erythematosos but doesn't mean I have it. It does raise my risk/vulnerabilityof it in me and any offspring I could have in the future.

     

    One b ig issue I had is that myback has always been a significant issue but for many years my pain and immune systemissues were ignored or thought to be 'in my head.' I even got shingles when I was7... seems that wouldhave been a clue that my immune system is messed up.

     

    Anyways my main reason for writing is to suggest the JRA list on yahoo groups. it is an AWEESOMEEEEEE support system for parents of kids withrheumatic diseases and quite a few of us adults with JA are on it to. I was with it for along long time but not currently due to 2 muchstress to handle all o ftheemails and such. They accept people without a cleae diagnosis and there are several parents there who have kids that have JAS as well as other spondyarthropathies. Ankylosing Spondylitis is one of several SA conditions. And like all autoimmune type rheumatic issues, it can affect any area although some diseases are more prone to affect aparticular area as is the case with AS.

     

    Good fortune.. hope yourson doesn thave any SA or JIA etc. I also haveJuvenile onset fibromyalgia and a bunchof other random health issues. I finally got a good primary care doc and goodpediatric rheumatologist that got me on the right road... wish I still had them now butI outgrew them. Anyways, the list also has good information on ped rheumies in different areas too.

     

     

  • melanie
    Nov. 07, 2009

    hello rita, i'm melanie.  if you'll go back and read my previous posts you'll learn my history.  i have spondylosis in my hips/sacrum.  i'm now 51, but i know i've had this disease for my entire adult life.  my rheumy says i probably had juvenile RA that wasn't diagnosed.  i'm 6ft tall and had horrible "growing pains" in jr high and...

    RHMLucky777

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    hello rita, i'm melanie.  if you'll go back and read my previous posts you'll learn my history.  i have spondylosis in my hips/sacrum.  i'm now 51, but i know i've had this disease for my entire adult life.  my rheumy says i probably had juvenile RA that wasn't diagnosed.  i'm 6ft tall and had horrible "growing pains" in jr high and then after i finished nursing school in 1986 i had terrible pain in my neck and hips all the time.  eventually in my tailbone, so bad i worked nights and i couldn't sit down.  i went hours when we weren't busy, just walking around!  anyway, i test negative for everything, but have RA from both sides of my family.  i test neg for hla B-27 (i think it is) that is the genetic testing for spondylosis.  i haven't been told mine is ankylosing, but i know i have inflammation in my sacrum all the time.  my doctor injects my hips with steroids about twice a year, it's not painful....i get some pain relief, but not completely.  the best thing i've done in forever to help myself was to go buy a sacroiliac belt.  my doctor told me that was ok, just not to wear it all the time.  i wear it while i work, i still do a good bit of lifting and it helps tremendously.  heat and ultram are my buddies too.  i've taken ultram for 6-8 yrs, occasional hydrocodone.  i sure hate to hear about your son being only 13, but it's good to know what your dealing with so he will understand why he hurts.  you need to find a good physical therapist too.  that ibuprofen is going to eat up his stomach, be careful.  i've taken celebrex for years too and i couldn't function without it.  i know you are afraid of the big meds, but remember they will stop some of the damage and they really do help to get a handle on the pain.  i take methotrexate inj and humira both weekly.  it's scarey, but necessary.  make rice socks with old tube socks.  just pour cheap rice into them, tie a knot at the top and he can warm them in the microwave before bed and take it to bed to lie on.  you just can't imagine how much that helps and it's way safer than a heating pad.  they starts stinking after awhile!  my kids probably put them in for too long and they smell like burned popcorn!  but, they are cheap and i make zillions of them.  i even warm them up for my pets - i have a hairless dog and cat!! tell your son to think about becoming a rheumatologist when he grows up.  they don't take call - much!  we need more that REALLY understand the disease.  i wish you guys the best and good luck with all the decisions y'all will make about the meds.  if i can ever help, just let me know.  melanie

  • Anonymous
    Sharon
    Nov. 03, 2009

    As a small girl I would wake my mother at night crying because of pain in my legs, back and just overall pain.  My parents thought I was doing this because I was a twin and perhaps was wanting attention.  At the age of 13 they finally noticed that the pain was getting so much worse and that my spine was beginning to make a frightening change that...

    RHMLucky777

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    As a small girl I would wake my mother at night crying because of pain in my legs, back and just overall pain.  My parents thought I was doing this because I was a twin and perhaps was wanting attention.  At the age of 13 they finally noticed that the pain was getting so much worse and that my spine was beginning to make a frightening change that maybe I needed checked out.  I was finally diagnosed with Scoliosis and arthritis.  Scoliosis is something to check in to....I wore a Milwaukee brace until I supposedly quit growing.  Well, my spine continued twisting and I had to have my back fused with rods, screws, and I was then put in a body cast from my chin to my pelvic bone for nine months. (I was 27 at the time)  I am now 56 and I have since then had 3 surgeries on my neck and one on my right shoulder. Oh yes, I also had to have surgery to try and stabilize my low back which failed.  I live with chronic pain daily; along with terrible migraines.  I'm not trying to frighten you....just check it out. 

    God bless you Rita, and your precious son.  I have two of my own.Smile