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Joined: Sep 2014
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Ronelle Offline OP
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My son was just diagnosed with AS. Does anyone here have a child with this disease? If so, did you start with medications right away (what kind) or with diet? Or both? Please share any information that you may feel will help me support him in dealing with this. My mind is reeling!! TIA!


13 year old son dx 9/14
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Never realized how many little ones have such true AS. Wish I knew how that worked as compared to a classic SA to AS case. I can't believe these poor babies have to deal with this. Probably best you fill his day with sports and maybe some diet modification at night.

I'm so sorry to hear this.

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My children are older now, but two of my kids were diagnosed at approximately your son's age. Most pediatric rheumatologist's are very mindful of the permanent damage these diseases can cause and so tend to be pretty aggressive with medications and treatments to control inflammatory diseases. We started both of our kids on anti-TNF medications pretty quickly. With my daughter, we did try diet, exercise/PT, NSAIDs, and some alternative medicine options first. Her condition significantly worsened and she was started on Remicade. Eight years later, she is a happy, healthy, graduate student at a prestigious university. She manages her disease well, lives independently, and is still on Remicade. My son was started on Humira the day he was diagnosed. Three years later, he switched to Remicade. He is also happy, healthy, and doing very well. He attends college several hundred miles from home and manages all of his own medical care. He played varsity sports in high school and currently plays club sports in college. He too is still on Remicade.

There is nothing wrong with trying careful dietary modifications with your son. However, you need to understand that there is no universally accepted evidence that the low starch or no starch diet is truly effective for AS and other Spondyloarthropathies. (What you will read on the internet will be undocumented personal stories and some reissued papers based on old research.) Additionally, you need to be mindful that your son is entering his most significant developmental stage since infancy. The LSD/NSD is very difficult to do well while providing adequate calories and nutrients for his rapidly developing body. If you decide to try the diet, I would recommend that you do so only with the knowledge of his physician and the guidance of a nutritionist.

Getting him moving through sports, stretching, and PT is also very important.

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Hi. I first noticed symptoms when I was 12. The pain was awful and in my heels and my ma would let me take about 4 adult asprins and try to pass out (Still my fav way to escape pain, sleep, not asprin ) Berries help. Doxycycline may help it is what I have used all my disease' progress but also since I was diagnosed finally at age 30, I have never had a day without an opiod in it. I'm allergic to ibprophen. If you son can take that it's prob good. I was told to start slow on the pain meds as it will be worse as I got older.Thus I have not had more than a handful of vicoden in my life, no painpatches, no percadan, but I am currently on heavy opiods awaiting a shoulder surgery. Exercise does help. My back is bent so prob I should have spent more time doing the 20 minutes on my back then my front and sleep w/ no pillow under my head. I wish you and your son the best.


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My twins were diagnosed at 16 with AS. The guilt I felt was crushing. They responded well to nsaids for 4 years or so and are now both on Simponi, have Bachelor degrees in engineering fields and make more money then I ever did.


No families take so little medicine as those of doctors, except those of apothecaries.

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Hello there and welcome to Kickas.

There have been several parents over the years that post here for their children. The most frequent poster who rarely posts now is Sassy... you can send her a personal message here. Her son had AS since about 13 as well I believe.. but now is all grown up.

He was on several of the different TNF meds.

My advice... learn all you can about AS and the treatments. There is a lot we can do to help ourselves in fighting this disease. You can always combine diet with medications as well, it is not necessarily a one or the other.

Best to you and your child.

Tim


AS may win some battles, but I will win the war.

KONK - Keep ON Kicking
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Ronelle Offline OP
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Thank you to everyone who responded. I so appreciate your input! My husband and I are, at this point, on slightly different sides of the fence re: how to treat. Thank you to Stormy for speaking of how your two children progressed. I am more in favor of treating with tnf blockers to start (with dietary changes, as well) because I am very frightened of how much damage can occur during this time of great physical change. I am very glad that you reiterated my concerns. I am so happy to hear that all of you have children who have gone on to accomplish their goals. And, thank you Tim for the contact information. I will pm Sassy asap. Blessings to all of you!


13 year old son dx 9/14
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Ronelle,

My 21 year old daughter got dx'ed this year, but she had symptoms for about four years. I read posts here where rheumatologists put their children on biologics almost immediately, but my DD's rheumatologist is very conservative. She went on NSAIDs without much improvement, but she also has chronic nausea and vomiting from gastroparesis. The doctor did a course of steroids, but we are at an impasse now because her vomiting is interfering with med absorption. He really doesn't seem to want to put her on an anti-TNF--perhaps his natural conservatism, perhaps because of her other condition. She is down to Tylenol and is in pain a lot. If she walks for any distance at all she has to use a cane.

I hope you son finds some relief.

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I feel that while medication has potential dangers, no authorized med is as harmful as uncontrolled inflammation. Therefore, if a doctor is unwilling to prescribe something that can bring it under control, then get another doctor.

I was using crutches in my 20's while on corticosteroids (which hardly helped at all). Then a doctor put me on NSAIDs and I pretty much got my life back - for the last 22 years. If I can get off NSAIDs then that would be great, but NSAIDs ain't as harmful as uncontrolled inflammation. I hope you both find something that work for your children.

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Ronelle Offline OP
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Thank you for your responses and your insight. I hope that you both find relief from your pain and the effects of your medications.


13 year old son dx 9/14

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