October 16, 2023 at 11:04 am #467573Brandon415Participant
Lost dad here. My son has had JIA since he could walk. Started in his knees, progressed to his wrists and fingers. Occasionally, he will complain about his feet. We’ve tried to go the holistic route- diet/supplements/exercise/etc. Started him on LDN a few months ago- and t has helped with the swelling in his fingers and range of motion in his wrist, but I can tell it just down regulating his inflammation and it not going to put him in remission. Read Road Back, and currently reading Katherine Poehlmann’s book. We’ve started a form of AP (Azithromycin since he is 8 and hasnt lost all his baby teeth) 250/mg daily- started beginning of October. About a week in, he is in the worst shape of his life. Everything is inflamed/ swollen/hurting. Every joint that has ever had an issue is bothering him right now. We are giving him aleve occasionally, and epsom salt/peroxide baths. I keep questioning if I made the right decision? I know you have to get worse before you get better, but he already has some permanent joint damage, and I don’t want it to get worse since he is still growing. Just hoping someone has gone through this and had a happy story to tell- because I am losing my mind. Up until we started AP, he had some degree of inflammation, but for the most part was under control, he could play, run, and keep up with other kids. This last week and a half he’s been limping around saying everything hurts. I’m just scared that this is damaging him. I currently see 2 rhuems- doctor S. in San Diego who is prescribing the Azithromycin, and Dr. Y. in Newport Beach who is prescribing the LDN. Dr Y. advised against the AP saying that there are studies that link antibiotics to JIA. I’m just so torn.
Edited provider’s surnames to initials only as per forum guidelines. Thank you for understanding.October 16, 2023 at 11:23 am #467575MazKeymaster
Hi Brandon, there have been a few parents who have posted here in the past and I will try to locate their user IDs so you can try to connect.
The upside is that you’ve read the Henry Scammell book, The New Arthritis Breakthrough, so you’re au-fait with Dr. Brown’s chapter on individual dose titration (I.e., titrating to patient tolerance). Did you talk with Dr. S. about titrating your son’s dose?
As described in the book and in the FAQ section of this site, a herxheimer is expected with AP and Brown had recommendations to manage things during this period.
Presentation by Thomas McPherson Brown, M.D., “Guidelines For Infectious Hypersensitivity Approach To The Treatment Of Rheumatoid Arthritis”
Also, FAQs 20-26 may be relevant to read at this stage, though reading through them all can provide a good primer.
Hope these resources help a bit and that others in your boat will chime in for support.October 16, 2023 at 11:29 am #467576MazKeymaster
Further to the above, here are JIA Stories on site to read:
One of the stories was written by Forum User, Evalon, if you’d like to try to private message her. Another forum participant who wrote a Story has user ID, Anonymous.October 16, 2023 at 5:43 pm #467579Brandon415Participant
Thank you Maz,
I am reaching out to our Dr. to see about possibly lowering/spacing out the dosage. Thank you for all the info, I agree that this might be a hypersensitivity issue, and it’s just too much for his little body to handle (he’s had this for a while). I have to go with my intuition, as I do feel as though this is the correct course of action for us, but at the same time I hate to see my child suffer. Since we’ve started AP we’ve noticed a significant decline from his baseline (which I know is expected) unfortunately, patience is not a quality I was blessed with, so I have to keep reminding myself to trust the process. Thank you again for your response.
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