Kickas.org Forums Treatments, Drugs and Alternatives NSD and diet-related; Need advice for 11 year old son

Hi Jingabee16, sorry to hear about your son I was in a similar situation when I was around his age with pain on my hips which alternated.

At one stage I was walking to the toilet pushing an office chair since I could not stand up and eventually spent a month in bed,
Long story short I went to the hospital and I got steroid injections directly into my hip joints. Till this day I never suffered with my hips again. However the disease later moved up my spine after many years.

I am telling you this because if things get out of control, there's something you can try.

Good to hear that diet makes a difference.

All the best to you and your son.

Thank you L33, It's helpful to hear from people who have had back/hip issues from a young age. It's difficult trying to figure this all out on my own and I don't feel like his rheumatologist is very informative. She pretty much didn't leave time for questions and dismissed his case as being a mechanical problem since it improved. This is after she wrote me an email stating he was showing signs of back arthritis. Granted we do PT and go to an OMD but those therapies work best with diet. I switched him to another dr. after the last appt. Hopefully, she will be a better fit.

I had a similar experience with a rheumatologist. When all of my tests came back negative, she became curt and dismissive. Told me the pain was in my head, even though she had seen my puffy, swollen fingers at previous appointments.

By then I had found this site and was already improving. Since all I wanted was to be pain free, I didn't see the need to pursue a diagnosis. I had also come to realize that rheumatology doesn't have much to offer....just medications that are expensive and potentially harmful in the long term.

In the end, the only good thing that came from meeting with a rheumatologist was that it led me to learn about AS....which led me straight here and the NSD.

I hope you have better luck with the next one. (No 11 year old gets arthritis from wear and tear.) But if not, it sounds like you already have a treatment plan that is working.

The remarks about doctors can really get me going and so I'll stop already since it isn't productive. Yes, just find a different doctor and in my estimation it could easily take more than ten different doctors before you find a competent and empathetic one!!! Sadly most must be in the business for the status, money and their over-inflated fragile ego.

But I know a case of a woman that spent 15 years going from doctor to doctor being diagnosed with bulimia. Finally the last one she met decided to ignore the history file and opinions of other doctors and listen to the patient. He discovered that she actually had Chron's disease and she improved after all those years of suffering.

My mother broke her arm and an incompetent surgeon decided that she didn't need surgery. After a year of monthly visits with him telling her that she's getting better according to the monthly "rigged" X-Rays despite her telling him that the pain is not going away. I finally got frustrated with the situation and I took her to a different doctor at a non-government run clinic that did a thorough evaluation. Upon the next visit you could see his fear regarding her case and he told us that he can not get involved since she is the responsibility of another surgeon. We immediately called the original surgeon for a visit. Upon walking into his office (I was already about to take his head off before ever seeing him) he spun around on his chair stating that surgery was planned and that the best surgeon would be taking care of her. Obviously the doctor at the private clinic called the surgeon lacking enough sympathy for he suffering. The surgery worked. I don't know why that doctor would let her suffer for over a year with a broken arm that was never going to heal. He deliberately had her arm positioned in the X-ray to hide the break and I can only imagine that the technician was involved in the fiasco as well.

I have at least a dozen stories like this and it has given me a very biased perspective of the whole medical establishment -- there is ample incompetence and they definitely cover each other's arses! It is a sad fact that doctors score lower on medical school entry exams in comparison to physics majors, engineering majors, and many others. Perhaps it is a good idea to interview the doctor regarding what their undergraduate major was and their GPA. "Just 51 percent of students who enrolled in medical school in 2012 graduated with degrees in biology, according to the Association of American Medical Colleges data." -- https://www.discover.com/student-loans/college-planning/majors/become-a-doctor.html

So, on a positive note, don't fight with any doctors. Get a different one and try rating your MD http://ratemd.com/

Thanks for all the support and advice Kellybells and Robin H. It's comforting hearing your stories and helps me figure out a plan. I agree that being pain free is more important than a diagnosis. Keeping the inflammation down to prevent damage also equally important and go hand in hand. It sounds like it's tough finding a good Dr. I will ask around for recommendations. Many Doctor's don't have reviews.

I have another general question for everyone. My son was doing better up until last week when his PT went overboard. He had him do a bunch of lunges at a time when he still avoiding stairs. I knew at the time it was too much for him but didn't speak up because he was doing so well, like he was riding his bike 4 times a week for 30 minutes and able to participate in a little more PE. So I thought maybe I was being overprotective, and maybe the PT knew better. Apparently not, next time I will speak out.

It took a week to recover and he was out of commission all of last week. He felt better on Sunday but then went to a bday party and overdid it again. This morning he said he is feeling better.

Do you find that physical exertion can also flare up the joints or are flare ups mostly diet related? His flare up was at the top of the femur and to a lesser extent in the si joints. It was not muscle pain.

Just wanted to add he went from a pain level of 0-1.5 to pain level 2-3, so it wasn't a major flare just an irritation. But it was enough to keep him from wanting to exert himself. He still did his stretches and plenty of walking.

I am also considering having him switch to yoga or pilates instead of PT. What do you think?

Hello Jingabee16:

Exercise:

I think knowing basic yoga is a must. I am not familiar with Pilates but it's also probably good. Swimming is another excellent low impact physical activity. There are many threads about how exercise is important (it's a no brainer!) The stretching is essential but some resistance training is important too because it reduces inflammation, promotes growth hormone which is essential to healing, and many other positive benefits. There seems to be some benefit from high impact too for AS people but perhaps AS people should limit it -- at least find their own limits. I often ran and still can. The impact seems to do the spine good for me and improve rest.

Get your son to learn to listen to what his body tells him it needs; i.e experiment and push but learn his personal boundaries. Mind you, our instincts can be counter-intuitive. Pain usually tells us to stop moving but sometimes the pain is usually from not moving enough. So experiment an learn.

If your son has learned all that he could from PT then perhaps it is time to move on. It could be a hard decision for both of you. As they say "people can remember all the wonderful things that you do but fart just once!..."

As to stretching. There is debate and research about what kind is best -- slow steady holds or fast jerking movements. Old wisdom, based on I don't know what, said that the method of jerking stretches caused injury, and I would agree it is true when the muscles are cold. But modern studies are proving that rapid stretching is best. You will see sprinters doing such warm ups just before a run. They will be swinging their legs at maximum range and doing it fast while standing; they are seldom seen sitting on the ground and holding their toes in a stretch. I suggest that you dig up articles and decide for yourself what is best or even talk to the PT about the pros and cons of the different stretching methods. Since AS people's bodies don't respond to injury normally then perhaps slow and gentle stretching is best since we probably are not looking to become sports stars.

New and Old Injuries:

Old soft tissue injuries or recently strained soft tissue are strongly attacked by my immune system now creating symptoms of burning in enthesis and tendons, spasm in associated muscle, and these symptoms do not go away. They worsen with muscle overuse resulting in micro-injury, fatigue, lack of sleep, being dehydrated, consuming too much coffee, and starch. I am not on any medicines and avoid pain killers like the plague since they damage the gut and make me more sensitive to foods.

Gut Healing:

John, the webmaster, I think has good advice on using fats/oils in gut healing. It is a step in a sound protocol that I have been negligent on. I have been overly focused on rotating the use of natural antibiotics and then using probiotics along with nutraceuticals, hence I may have a decent microbiome (containing a few nasties) but the integrity of of my gut is still poor. John has a number of articles which include gut healing that I need to revisit. They include using dietary supplements (borage seed oil, etc) and fasting.

https://www.dropbox.com/s/mh3lrsm8208glge/ASonlineGUIDE1112.pdf

and he briefly discusses the use of borage seed oil and many other nutrients at the following URL
:
https://www.kickas.org/ubbthreads/ubbthreads.php?ubb=showflat&Number=516907#Post516907

Also, every month some people do a three day apple fast on the weekend to eliminate parasites, allow some microbes to die off and give the gut a rest. The theory is that it will heal if it isn't busy. I do have a concern about fasting and how it creates ketones. Ketones can be a food to promote some parasites and also encourage them to morph into an aggressive state. But believe that John states that those parasites (Candida Albicans in particular) should have been eliminated before doing the fast. Someone please correct me if I am wrong.

I hope this helps. It helps me revise and fix the many things that I am doing wrong to myself. HAHA!

Just one more note:

People need to respect a person's limits:

AS should teach him to learn to be kindly assertive in a mature way (no wining or long winded explanations unless he feels it is necessary or the other party needs an explanation) and not allow people to push him to do things he feels are not good for him: not a family member, not peers, not even evil bosses! People pleasing can make a person sick.

Hopefully when he is older and might find himself in a job that he can't afford to loose he will have the wisdom to let it go and hopefully have supportive people around him.

My symptoms are primarily mediated by diet now. But once I'm inflamed (I get a bit cheaty with NSD now and then, I confess) then exertion makes things worse.

Pre-dietary modification I was pretty much always in pain, and exertion very clearly made things worse. My knee would double in size, or my lower back would spasm, or I would get a strange pain deep in my hip joint when I overdid it (long walk, big workout at the gym, etc.) Could keep me off my feet for days.

I've only been doing NSD since January but I had been grain and dairy free for years - I think this massive reduction in my starch and dairy intake gave my joint cartilage time and space to actually start healing and improving. My joints are much better now than they were 10 years ago, even though I'm that much older and in my 40s now.

It's possible that your son's pain is triggered by exertion because his joints haven't had enough time to heal. To get to the point of visible damage on xray or MRI, there has to be significant and sustained inflammation. My guess is that takes time to really heal and recover.

One thing that I found really accelerated my joint healing was plain gelatin. I would mix it with juice and drink it down or make jello. There are lots of expensive variations on the market: type 2 collagen, collagen hydrosolate, keratin hydrosolate, etc. but I felt I got the same type of connective tissue benefits from plain old gelatin.