Juvenile Ankylosing Spondylitis

[motherbear]

Hi everyone,

I will try to keep this short and factual as I want to read flag symptoms by using bold print for symptoms that go amiss with nearly all cases of Ankylosing Spondylitis or AS for short.

My son's first symptoms started when he was just 10 years old.

He had bilateral hip pain for two weeks. Xray's taken, normal. Bed rest ,.Symptoms cleared, no further problems.

Aged 11 years bilateral ankle swelling, no pain. Seen by GP, showed no concern and eventually they cleared up too.

Aged 12.5 years stiffness and pain in lower back and hips. Didn't mention anything to me as he thought it was growing pains. Note: growing pains only happen during the nighttime not daytime!

Aged 13 years. July 2007 Complete onslaught, hips, knees,ankles, back, jaw,neck,wrists,and hands painful and stiff! He couldn't walk or move in his bed.

No two people are the same and different joints can be affected at different times.

My son was tested for the HLA B27 gene and was poss. This can be passed down from a parent who has a family history of reactive arthritis and ankylosing spondylitis and a few other auto immune diseases.

Seen by Rheumy CRP and Sed Rate very high , this was not evident at all at the beginning. Put on high doses of Ibuprofen with no effect. To cut a long story short we went through a whole host of anti-inflammatory's with little or no effect. In the meantime I was doing everything for him as he was unable to even get out of bed.

Physio, Nutritionist's,acupuncture etc all played a part but in the end it was just a case of maintenance and I wanted more for him.

I trawled the internet to the very early hours of the morning when I wasn't turning him or massaging him or medicating him. It was a complete nightmare. So I kept trawling the net in the hope of finding something, anything. He was put on Enbrel which to this day I wish he hadn't. It helps but not enough to warrant the scary side effects.

I found Road Back and researched it to within an inch of it's life. The idea that every disease has a trigger factor struck a note. My son has  had one bowel infection after another. This was it! I thought back to every little thing that had happened to him over the years and it just made complete sense. His trigger factor was a bowel infection. Yes, he was HLA B27 Poss but that just made him more likely to acquire an auto immune disease given that he gets that trigger factor as well!

Months later we ended travelling down to Surrey in England from Scotland and saw a wonderful Doctor, DR. H. He examined my son and told me that he was the worst affected teenager with AS he had come across. He was more than happy to start him on a low pulsed dose of 50mg M.W.and F of Doxycyline with a view to up the med to 100mgs in a months time.

We came away and filled the prescription. I remember looking at the tablet and feeling quite sick because everything was hanging on this insignificant little tablet.

So here we are today, five weeks after starting AP Therapy. Previous to this he was anorexic, pale, underweight, in an enormous amount of pain not to mention the stiffness. Did I mention depressed.

Previous to him starting AP I had his CRP taken and it was 64 which is very high as the norm is 0.  We just received his new CRP results after 4 weeks of Doxy and his CRP was 33!! Yep 33!!

He is hungry and eats everything, put on 5lbs, his colour is back in his face thank God and his pain is ever so slightly reduced. We have a long way to go but it is going in the right direction.

Watch this space! 🙂

Caroline.

[motherbear]

Hi again,

Well it has been a rocky road. The first two months seeing improvement which had us all excited and then at the three month mark we increased his dose by 100mg Mon-Fri instead of M,W and Friday.
After about a week he had a huge flare up/ Herx? Still don’t know which one it is really.
We decreased his dose by 50mg on the Tues and Thurs and still after a couple of months he is in increased pain.
His lab results have worsened and his CRP has risen to 61 ! I never felt so disheartened. 🙁
Time has passed and he is still in a lot of pain. After a lot of thought and research I have decided that he is hypersensitive to his Doxy. So I am going to decrease his Doxy to the original dose and hope for the best.
This is so hard and although I have been absolutely convinced that bacterium is the cause of onset of this disease, I must admit I had lost faith for a while.
The thing is that it doesn’t hurt to keep it going so we have. Now for some strange reason I feel positive again. I think it is because I am being proactive.
All of you out there, keep it going! If you read the posts and threads you realise that everyone has gone through their ups and downs. There is no reason why he should be any different.
I remain convinced that this is the way to go. I will post again in a few months and let you know what is happening.
Until then fingers crossed that his pain levels reduce quickly.

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