Kickas.org Forums Ankylosing Spondylitis General Discussion Helpful Tips AS and my dd

My daughter is 18 and has just been diagnosed with AS. She just started taking prednisone Tuesday as she is too sensitive to the Lodine, Relafen, and Celabrex. So far she is feeling much better today. She has had extreme pain and swelling in her knee, ankle and elbow as well as neck pain and back pain.OH and rib pain. WE are realizing she may have had this since at least jr high school. She always told me it hurt to do sit ups. I didn't understand that but we did have her checked but nothing was found to explain her not being able to do sit ups without pain. I am here to learn as much as I can to help her through her bad days.

Hi Kathy,

Sorry to hear that. Please check out the No Starch Diet information on this site and get a copy of Carol Sinclair's book "The IBS Low Starch Diet"

Many people with A.S. (myself included) have found relief through following a low starch diet. The earlier this can be started the better.

All the best,
Ruby7

Dear Kathy
The symptoms of your daughter who is just 18 years old is much more than AS at this age and stage. I wonder if or not she is suffering from another disease rather than AS. It is AS then it is very severe perhaps grade IV type and she needs much more than NSAIDs or prednisolone. May be TNF alpha blocker or some biological agents should be given otherwise the joints structure get damaged early.
Best Wishes

Well not all the blood work is back from the dr. yet. What other disease could it be if not AS? Your scarin me

Yes her and I have both talked about changing her diet. She has been a non red meat eater since the age of 12. She does eat chicken, turkey, and fish.

Kathy,
Welcome to kickas.

I have Undifferentiated Spondyloarthropy (related to AS) and my 17 year old daughter is showing signs of having something similar. She has pain in her ankles, knees, hips, SI and neck.

When I started the No Starch Diet and experienced significant relief, I suggested she try it also. She has been mostly on the NSD since October. When she is consistent about the diet, her pain levels go way down. When she cheats, she starts to hurt again. It's hard because she can't eat like other teenagers-no pizza, hamburgers, chips, etc, but it's worth it to get relief from the pain.

You might want to check out the NSD forum her at kickas. It has helped many people.

I do hope you can find some answers for your daughter. She is lucky to have a mom who cares about her so much.

Karen

HI,
Welcome. When I was 12 I started having pain. By the time I was 18, I wondered if I should just go away and die. No one believed how much pain I was in. It is difft. for all of us. But encourage her to go NSD! Also challenger her to stay active as possible.
This is a great site, but keep looking until you have a protocal that works. She is blessed to have a loving mom like you.

My partner has suffered with AS for the last 12 years, but only recently the pain has been that bad, she wanted to end it all, so I had to do something about it and have done some research.

The strength and amounts of medication she was taking was ridiculous, but what do you do when you are in constant pain?

I found out that the medication can have an adverse affect and speed up the development of AS. The doctors won't tell you this, although when the question was put to the doctor he didn't deny it either.

Based with this in mind, we had to look at alternatives.

1. We cut out most dairy products.
2. We cut out starch
3. Replaced vitamins that the body was not producing in
sufficient quantities, with a supplement.

Evening primrose oil
Cod liver oil
Wheat Germ. (Bags of vitamin E)

4. Included sea food more in the diet.

5. Invested in a juicer. Breville JE4 which is expensive. Cost me £275 but a joy to use, cleans very easily. Just takes apart and rinse under hot tap. Probably the best juicer on the market. The quality of juice is brilliant.

6. My partner uses this all the time.

We started approx 12 weeks ago

With-in 2 weeks she had stopped all medication and has been pain free ever since. Considering the amount of tablets she was taking I find this amazing. Now her life as changed 1000%. She can do things now without being in pain.

Everyone is different but this is not rocket science, and once you can get a balance the changes are almost over night.

I for one did not believe this until I saw it with my own eyes.

What have you to lose ?

All I can say is WOW!!!!

I have been trying to incorperate some of these....Im so glad she has had good results.

Please keep us updated.

Take Care,

Lisa

She will be starting Enbrel this coming week.