Kickas.org Forums Treatments, Drugs and Alternatives NSD and diet-related; 14 year old son - help please

My 14 year old has just been diagnosed with 'enthesitis related arthritis (formerly known as juvenile AS). He has pains in his feet, ankles, wrists, elbows, knees and hands - some deformity in 2 fingers on each hand and in his toe joints. He has back stiffness on waking, but no back or hip involvement so far. The rheumy suggested exercise and drugs plus orthotics to help his walking and put him on NSAIDs. The basic diagnosis is "we don't know where this is going, but over 50% of children go on to develop AS." Because the rheumy was really slow getting the prescription to us, I was lucky enough to find this site and
I've spent the last 10 days reading non-stop, mostly in this forum. Thank heavens for the internet as otherwise the overall message about AS is pain and more pain. You are all so positive and have given me such hope that his future will not be so dire. Thank you all so much!!!!!
Anyway, we've started a low starch diet at home and he's doing well but, being 14, doesn't want his friends to know, so there's no way of going totally NS at the moment, although he's eating very little starch at school and virtually none at home.
I've had invaluable help already from one ASer (I can't thank her enough), but has anyone else any experience of kids on a low starch diet and how this affected symptoms of juvenile AS? I'd really appreciate any further information. Needless to say after reading this forum, there's no way of him starting NSAIDs if we can do anything else first!!

Thanks so much - you're amazing!

FW, I can't help you with your specific question, but I just wanted to add my shoulder to the load you're carrying. I can only try to imagine how you must feel watching your son go through this. He's very lucky to have a mom like you. I hope you go into the Family & Friends forum and that you link up with one or two of our other AS moms. There's nothing like talking it out with someone who undertands.

Many hugs,

Hello,

Sorry I can not help with the secific question as well, but glad you found this website. It has been a life saver for me when I had to come off of medications.

Concerning the diet... if he is responding that is good to hear. I believe in the leaky gut as a reason the bacteria are an issue for some of us here (gut becomes more permeable). If that is the case with your son similar to me, he is probably in a good position to take advantage of the diet. More NSAID's and alcohol you drink, the more of a leaky gut you may have IMHO.

So... if he is responding to diet, once he feels better he could try some what I call "fringe foods" that are a bit more safe that may allow his diet to seem more normal to other kids. These are some foods to look at...

1. Brown rice (more easily digested starch)... ditto quinoa, aromath etc... all of the whole grains.

2. Chocolate.... the darker the better. I have been eating quite a bit lately myself. I have been on diet for over 5 yrs now and needed quite a bit of time for healing gut due to past NSAID/alcohol consumption. But now I enjoy without issue.

3. All natural ice cream... only brand I could tolerate in states now and again was Breyer's, but you may want to check natural health food stores. I can eat ice cream down here in Argentina without issue... and it is sooooo good!

Of course for me, blueberries with yogurt (with probiotics like Stoneyfield Farms), pineapple, grapes, strawberries, cherries are always excellent treats... ditto raisons, walnuts, Craisons....

I would look into probiotics as well, maybe discuss with doctor first. But they are what really helped me turn corner with my personal healing plan.

Best to you and your son,

Tim

Hi & Welcome,

You are SO NOT alone and neither is your son..

There are so many things you can do to help him, my 2 youngest are starting to exhibit some of the signs although we dont know for sure Tori my 13 year old wants to get tested so she will know, Ethan who is 9 haven't really talked to him about it. I also have a daughter who is 24 she seems fine right now.

We have slowly been eliminating things from Tori's diet, I am so proud of her she has given up ALL drinks and just drinks water which is just amazing to me, I cant do that I still have to have my tea or pop. I have been pushing alot more fruits (natural) I saw in the book store the other day a book on inflammation and the roll it plays I wanted to get it but got in another area and forgot about it..lol I will let you know about it when I get it.

Just post where ever you need to we are all here to help. Sorry your son has to suffer like this, it is horrible to see anyone suffer but especially hard when it is one of our wee ones.

Take Care,

Lisa

i,m sure that your son will be better ,i do the diet it helps me 70% since last year ,but still take medication. i tried the medication alone ,it is not effective alone .so far i combine ,and hope the diet would be my only way to control my AS.
for the starch ,your son still can get his energy ,from glucose and fructose in fruits or dried fruits.

Good luck

has anyone else any experience of kids on a low starch diet and how this affected symptoms of juvenile AS?

When I was a patient at Prof Ebringer's clinic he told me about an AS patient of his who told him his daughter had bad foot pains. Ebringer suspected possible juvenile AS and asked for the girl to attend his clinic. She responded well to the diet and all the pain went away. Unfortunately her dad never did change his diet, he preferred potatoes and pain. I hope your boy has more sense! Actually some sportsmen now advocate a high protein low carb diet so perhaps you could sell it as a macho thing. Little boys - sometimes we never grow up.

Thank you to everyone who responded so quickly to my posting I really appreciate your help and support. It's great to hear a success story about someone with JAS - there is hope! I know what you mean about processed foods. The first time I stood in the supermarket and could have wept. No problem with fresh fruit, veg and meat but everything else had starch (even organic yogurts). I had no idea it was in so many foods.
Angelmom - I'm so sorry to hear about your kids. It's bad enough being scared stiff about one, let alone two. Tori sounds to be a very brave, determined young lady but even so, I really hope your worst fears are unfounded. Thanks again everybody. You're all great and boy, did I need a boost!

If looking for yogurt and your son can tolerate Stoneyfield Farms is a national brand in the states you find at quite a bit of grocers now. I loved it on top of frozen blueberries, blackberries or strawberries (of course let the berries thaw).

Tim

Thanks - here in the UK, I managed to find Rachel's Organic which is also starch free. Good job, as yogurt has been a breakfast staple for years!