Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Reactive arthritis in son?

Hello, my old and new KickAS friends. I hope you'll let me join in your conversations again after a LONG absence. Life is incredibly busy for a homeschool mom of 3 boys, but I think of y'all often and send people your way who need to know about AS. SO glad I found you over 7yrs ago.

I'd like to get advice, if I may:
My very active 10 y.o. son has had health issues in the last few weeks including a psoriasis-like lesion on his scalp, a horrific episode of GI pain and diarrhea lasting over a week, conjunctivitis (pink eye--clearing up nicely with antibiotics), and a puffy, inflammed and painful elbow. He has had joint pain in the past, but not the rest of the symptoms. His pediatrician called today after consulting with a ped. rhuemy and their suspicion is Reactive Arthritis due to the infection. Not good news, but not surprising. We'll be going to the ped. rheumy in Nov and an ophthalmologist soon to check for iritis.
So my request is just for advice. I treat my AS with NSD, but he is resistant to it because he loves his gluten-free pasta, pizza, etc. I suspect that is the way to go, but it will be hard. We are trying to incorporate more raw veggie dishes, but time is short around here and we don't have too many in our usual routine.

I appreciate any help you can offer!

Hi, Ann:

It would be very difficult for a pre-teen male to do the NSD! The hope would be that this really is an ReA only and that symptoms do not persist or evolve into AS as is often the case.

I would be concerned about susceptibility; whether You each carry the antigen, but in any event this could be skillfully nipped in the early stages perhaps enough to allow minimal attention to diet, long-term.

You probably know all about giardiasis and already had him tested, but this can mimic AS in early stages of course, but the main thing if finding the pathogen responsible for the ReA and treating it early, so that perhaps intestinal lesions can be avoided or healed enough to avoid future replacement by AS--that is the opportunistic bacterium K. pneumoniae will take over and KRA (Kleb-Reactive Arthritis) will supervene.

You are welcome to write to me for my own AP for AS as a guideline, and the RBF (Road Back Foundation) might be able to recommend a physician in Your area, if required.

HEALTH to You and Your son,
John

Ann,

So sorry for your son. It is the reason I do not ever stop researching and searching for a way to fight this disease:my 3 children.

This is a post from last week that I found super interesting and maybe could be offered to your doctor for a possible treatment:

The link by goztopee2002 is a full write up on the clinical trial.

https://www.kickas.org/ubbthreads/ubbthre...true#Post448891

Ann,
Although it is nice to see you; I feel bad that it is under these circumstances. I hope that your son gets some relief soon.

3 boys, wow! Boys are just little men, they need your love and encouragement to eat those raw vegies. I woudld like to see you sit at the dinner table with your family.

Blessings
Lon

Hello there Ann,

Recall you being here in past, wish you were checking in with better news.

I have 3 1/2 year old, hope he never has to make diet decisions as I have had to as it is tough.

Hope you can find some answers, sorry I do not have any at this point. How is his diet normally.. pretty good?

Take care and best wishes,

Tim

Hello again and thank you for your kind words and advice!!! I love KickAS!

Thankfully, my son's elbow and joint pain have mostly resolved after about a week. He had an antibiotic eye drop for conjunctivitis for a week which took the redness right away. But now, at the end of the week, his eyes are red again and somewhat painful. We're heading to a pediatric ophthalmologist in the morning. Hoping it is only sensitivity to the eye drops.

We eat pretty well here (with encouragement ;-) : a green salad every day, more veggies at dinner mostly organic, some dehydrated veggie snacks, etc. Our family has been gluten-free for over 7yrs and all healthier for it. I am the only one low starch. He does NOT like the idea of being low starch, so we aren't going there now. Unfortunately, GF food tends to be even starchier that "regular" food. We'll see, but we are hoping more dietary modification isn't necessary.

Antibiotic therapy is intriguing, but I wonder if it is necessary since he is pretty much over this acute illness. I am tempted to give away our "new" (to us) gecko who may harbor salmonella which can cause reactive arthritis. There were no cultures taken, so we may not know what caused all this.

I am grateful for the blessing of a new pediatrician who is very sympathetic and makes many phone calls on our behalf. She has had iritis and suffers joint pain. I recommened KickAS to her!

Thanks again, my KickAS friends. You always come through for me.
Many blessings,
Ann

So we spent the day with ophthalmology and pharmacy. I'm not thrilled that my 10 yo son has iritis/anterior uveitis in BOTH eyes, but I'm thankful we caught it early and there are no signs of damage. In order to know how often to monitor him in the future, it is important to know what the underlying condition(s) may be. Our rheumy consult was moved up to mid-October. Sad that pediatric rheumatology is such a busy place that that is the first available appt.

So if anyone has figured out how to avoid recurrences of iritis, I'd love to hear it! Otherwise, we are waiting until October for more info.
Dragonslayer, please PM any info you can offer--thanks!

I wish you all abundant health,
Ann

Ann, if it were my child, I would give him/her mega doses of vitamin C. You can read more about how this positively affects our bodies at www.doctoryourself.com

You give it in divided doses, titrating to bowel tolerance. The easiest method is buffered powdered vitamin C. I get mine at www.cforyourself.com

Good luck to you and your family. So glad you caught it so fast!

Take Care,
Donette

hiya,

my son started showing signs when he was about 10 swollen joints stiffness bad guts etc. the Dr's were a mixed bunch but what we did which really helped was not a full nsd, as the kids need carbs not just for energy but alot more.

We switched to wholemeal everything and reduced the starchey stuff to as little as possible he did n't notice and in 10 days he got healthy again. We had to do that a few times and it really helped.

We also got hiom out of contact sports and he started to learn the consequences of a boys rough and tough knocks. He's doing ok now but we had one really bad year with him after a injury playing rugby. the spondylitis went nuts.....

In me i had a period of rective arthritis, they tried heaps of anti biotics and the one that worked and got me in remision for a year was cipro ..... and your blood tests show iga igg is up alpha and gamma globlins...

Will my son was always getting sore throats and ear infections and once we got on top of that it seemed to help alot. He's going fine now without lots of meds and apart from stiff and sore sometimes and lots of cracks much better than I could have hoped 5 years ago! If your son had bad guts watch out for nsaids,,,,making them worse.

Good luch hope your son fixes up quickly!

Dave

Hi Ann, so nice to see you on here again but really sorry to hear about your son.

Iritis, oh boy that's awful at his age. Really glad they at least moved his rheumy appt forward. I had an iritis specialist here (years ago now) who told me that stress is associated with iritis attacks. I am not sure how much stress a 10 y/o would have but perhaps it is worth keeping in mind. I had acute attacks and chronic iritis for many years and but finally managed to get it into remission with Remicade treatments.

Iritis in AS patients will often attack repeatedly.. although I don't know the stats for those without an AS dx or what the stats might be for children and they could very well be different.

Wishing you both the best of luck in looking after your health!
mig