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#517568 - 08/29/17 02:48 PM Re: Need advice for 11 year old son [Re: Jingabee16]
Kellybells Offline
Active_Member

Registered: 01/21/17
Posts: 63
Loc: Toronto, ON
Hi Jingabee, everything on your list of foods is on my 'generally safe' list, so I'd say you've done a great job at coming up with a plan! I've been slowly adding all of the fruits you listed over the last few months and have done really well.

I've had to give away the odd pineapple or bag of cherries because they were too underripe and tested starchy, but not often enough to stop me from buying them. I eat both fruits almost everyday. Of your list, pineapple and raspberries are both good sources of vitamin C, which is something I struggled to get enough of in the early days of NSD.

I'm so sorry your son hasn't shown any improvement yet. Tough to stick with a program without positive results, especially for someone so young. Hopefully he can get some relief soon.
_________________________
Suspected SpA. HLA B27, xray, u/sound, blood tests all -ve. Ancient history of plantar fasciitis, SI joint pain, knee arthritis. Recent history of tendinitis, neck pain, debilitating finger pain and stiffness (especially mornings). No diagnosis, no meds.

Jan 2017 - discovered NSD - 90-95% improvement in symptoms, continually amazed by my results, wish I'd found kickAS sooner
2014 - stopped eating all grains
2012 - stopped eating wheat
2010 - stopped eating dairy

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#517577 - 09/02/17 02:28 PM Re: Need advice for 11 year old son [Re: Jingabee16]
JayTeee Offline
New_Member

Registered: 04/05/17
Posts: 4
Hey Jingabee,

Just wondering how your son is doing now. It is very unusual in my opinion that he feels best in the morning and worst after activity - morning pain and stiffness, as well as decrease in pain with activity are key symptoms of inflammatory arthritis and are usually always present with AS. Have you tried giving him any NSAIDS (Ibuprofen, Diclofenac...not Acetaminophen) and if yes, how does he react to them? Do they help with the pain significantly?

Hope you guys are doing better, it is not fair for him to suffer at such young age

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#517592 - 09/10/17 11:39 AM Re: Need advice for 11 year old son [Re: Jingabee16]
Jingabee16 Offline
New_Member

Registered: 07/16/17
Posts: 12
Update: My son is doing better. Usual pain level from .5 to 1 these days. We are mostly on a no starch diet and it really took a month for improvements. We are still in denial that it is the diet that is making the improvements as it could be other changes we are making. We don't want it to be the diet but it looks as if it may well be. We have tried rice twice and both times his pain shot up to 3 within 2-3 days of eating the rice and lasted about 8 hours. Still not definitive proof as activity also can make him flair. We tried rice again yesterday and will avoid it, if the flair up happens again in 2-3 days. We are going to a functional medicine dr. in 2 weeks and getting tested for allergies, parasites and possibly other tests. Any advice on that front? What would you do if it were your kid?

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#517607 - 09/19/17 11:51 PM Re: Need advice for 11 year old son [Re: Jingabee16]
Jingabee16 Offline
New_Member

Registered: 07/16/17
Posts: 12
Just to update my son is doing better and it appears to be related to the NSD. It really took a month to notice improvements from a second hand perspective. Most days he is at a pain level .5-1 and once in a while at a zero. We have tried rice three times and every time after trying it, he has three days after pain level 3-3.5. Does it take others this long to see a flare after consuming starch? The first two times I was thinking it might not be related but now after the third time it just seems like too much of a coincidence.

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#517608 - Yesterday at 12:27 AM Re: Need advice for 11 year old son [Re: JayTeee]
Jingabee16 Offline
New_Member

Registered: 07/16/17
Posts: 12
Hi JayTeee,
Yes, I think it's strange he feels best in the morning too. I emailed his rheumatologist at Stanford children's hospital and she says that sometimes happens. She also says his MRIs show signs of back arthritis (I think they don't want to say AS, though there are other types of back arthritis) We have another MRI in about a month and she said we will know more then. I read that AS progresses differently in kids than in adults. I feel like they are doing absolutely nothing for him except waiting for him to deteriorate so they can get a diagnosis. Some activities really seem to make it flare especially stairs and high impact activities. We just got a new PT and he is awesome. When my son finishes a session with him he is at zero pain and one day he was at a three walking in the door. So maybe the wrong kinds of activity are bad but the right kinds help. He was on naproxen for about 6 weeks and I don't think it helped that much. It did take the edge off. He still had some really bad days while on naproxen. He is better now on the NSD than he was on naproxen. I wish I wouldn't have put him on that for so long. Still holding out hope it isn't AS but his positive response to the NSD isn't comforting, also it must be inflamitory if diet is working.

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#517609 - Yesterday at 12:40 AM Re: Need advice for 11 year old son [Re: Kellybells]
Jingabee16 Offline
New_Member

Registered: 07/16/17
Posts: 12
Thanks Kellybells,
It's good to know we're on the right track. We are able to add many more foods now. Blanched almonds are great, also onion, garlic, lemon, shrimp, cauliflower, broccoli, apples, dates, soy milk and avocado. Soy milk helped so much!

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