Kellthebell , hope you receive this message:
Can’t answer query ( healthunlocked.com/jia/post... ), but can point you to JIA resources (& realistic hope):
. . . • healthunlocked.com/jia/post...
. . . • healthunlocked.com/nras/pos...
. . . • healthunlocked.com/veganfoo...
I’ll delete this post once you receive it & accessed (noted the links) for your reference. 👍👍
Very best wishes to you & your little one 👩👦, dear lady. ☺️ 🙏 🍀 🌺 🌞
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Thank you so much for responding Kai, i have specifically read your posts when joining the forums as I have come to the same conclusions as you on most matters but I still have much to learn.
My daughter has been flaring after a year of remission and we've been put on new meds, the sort I've tried to avoid. We were managing by alternative health supplements and an anti inflammatory diet, I knew her triggers and avoided them but the old tricks are not working and there is obviously a new trigger for me to tackle. It used to be sugar, stress, wheat, a virus, septic fingernails that caused a flare, now I suspect it may even be a growth spurt that is causing it because we are so careful and shes clearly shooting up! She’s intolerant to ibuprofen and methotrexate, maybe her body is stressed and recovering from that? Her esr cre levels have been fabulous since her original diagnoses so the flares are no longer showing in the blood. She was bitten by a snake or rat a few years ago and thats on my mind too, maybe that caused an imbalance, I read it can cause arthritis. Not enough info on that, all too vague.
I bought the essential Paddison Plan a month ago which I feel is how we should eat but we have very particular complications, I'm allergic to histamine and so many vegetarian dishes are high histamine. Maybe thats her problem too? We've been on the plan a month but we’re still flaring, but I'm probably not eliminating enough but I have little control over the food she has at school. We are essentially 90% vegetarian, gluten and dairy free now although people keep buying her ice lollies and her nan likes to make her a gf pancake (more sugar) and we eat nut butters, maybe she has too much fruit sugars.... that may be problem. That 10% might be halting our progress in healing the gut. It all takes time anyway. Well that was cathartic, I’ve let it all out now!
Im going to stop rambling and start reading the links now, many thanks squared for being such a ray of sunshine Kai. X
P.S if anyone wants to know the answer to the original podiatry question, the answer for us was getting a gp referral as different specialists have different views on podiatry and our rheumi team thought it was unnecessary but our physio therapist who specialises in hyper mobility thought it essential. We are on the waiting list!
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Oh my goodness, Kellthebell, you & your daughter are certainly working through the difficulties that arise! Well done!! 👍👍
Gawd bless you both for persisting in trying to figure out how best to handle each situation. 😌 🙏
(You’re very welcome. 😌 🙏 )
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Do you think it might help to try to connect with other JIA parents directly?
. . . • Such as, Christine (Cole’s mum paddisonprogram.com/reversi... ) or
. . . • Laura (Alisa’s mum paddisonprogram.com/alisa-o... )?
Their direct, 1st-hand experience working through each difficulty (as it arose) might help guide you through the inevitable maze of pitfalls & obstacles.
And, they may help ‘ease your mind’ 😌, especially during the early phases when everything is new & may even feel overwhelming.
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✔️ Glad to hear you keep working with your medical team 👩⚕️ 👨⚕️ & avoided ‘rookie mistake’ of dropping their professional assessment & invaluable monitoring 📈📉.
✔️ Yes, yes, keep learning 👩🏫 the dietary & lifestyle processes hand in hand 🤝 with your daughter (& extended family members 👨👩👧👦👨👩👦👦 ).
✔️ It may not seem so now, but over time, it will get easier as you fall into a new patterns (new routines) of healthy habits.
✔️ Gently 😌 , lovingly 🥰 , allow yourselves time 🕰 📆 🗓 to learn, practice, & adapt & to even make mistakes. (We ALL make mistakes. 🤭 Forgive yourself & move on. ☺️ )
✔️ It will become effortless — a 2nd-nature, good habit in time.
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A few other resources of support & useful common sense:
. . . 💁♀️ Jackie (Jacqueline Morrey-Grace paddisonprogram.com/jackie-... ) founder of charity ‘Without Wings, The Manx Autoimmune Arthritis Trust’. ( withoutwings.co.uk/living-p... )
. . . 💁♂️ andyswarbs ( healthunlocked.com/user/and... , paddisonprogram.com/andy-is... ). Andy is on ‘Healthy Eating’ forum (as well as others) & his alter-ego is JIAer Katy 👱♀️ ( healthunlocked.com/veganfoo... , paddisonprogram.com/katys-i... , paddisonprogram.com/katys-l... ), who may also be another outstanding contact for you, Kellthebell. 👍👍
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You & your daughter 👩👧are in very good hands 🤲.
Please continue to persist in your efforts. Your determined hard work — along with your daughter’s sincere, committed efforts — increase the probability of improving your beloved’s long-term QoL (Quality of Life). 👍👍
Please, hang in there — both of you. ☺️ 🙏 🍀 🌺 🌞
Keep following folks who are improving, doing well. They want to see your daughter improve/ heal just as much as you do. 🤗
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[Oh, if you’d like this post deleted, please let me know & I’ll remove it. If you’d prefer it to remain (for anyone else looking for JIA resources), just let me know. No problem either way — whatever you’re comfortable with. 😌 Very best wishes to you & your little girl👩👧, Kellthebell. 😊 🙏 ]
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Supplemental thoughts:
• Yes possible additional sugars (ice lollies, pancakes, school lunches) & oils (yes, even the nut butters can contain a bit too much oil) can fan embers of low smouldering inflammation 🔥 & result in a flare 😫 — or even re-ignite a cascading inflammatory process. 😳 😧 [Ditto for any animal products (meats, cheeses, milk, eggs, etc.).]
• Yes, am wondering too if hormones (involved in growth spurt) are re-awakening inflammatory process? 🤔 Good question.
• If histamine foods are problematic for you (& possibly her), best avoid them ( pinterest.com/pin/266627240... , connersclinic.com/high-hist... ) as much as possible. [I know, I know . . . "stating ‘the obvious’ " . . . 😂 😁 🙃 )]
• Is it possible to counterbalance with anti-histamine foods ( pinterest.com/pin/700098704... , pranathrive.com/natural-ant... ; pinterest.com/pin/237283474... , alisonvickery.com.au/anti-h... )? 🤔
• Perhaps it’s ‘a blessing’ she’s intolerant to ibuprofen? 🤔 [Merely personal opinion, avoiding/ minimising ibuprofen all together is best especially when we’re trying to ‘restore gut health’. Ibuprofen can be problematic for gut health (particularly for those of us already struggling to improve our already damaged guts): google.com/search?as_q=ibup... ]
• Yes, yes . . . a month is very much ‘early days’. It takes time to figure out what works for her (as well as you) over time. Patience & ‘tried & true’ experiential learning 😣🔨 will get you through. Follow the elimination & re-introduction process carefully using your common sense & tailoring it to her young age. 😊 Paying careful attention (noting 📝 / documenting 📸 / tracking 📊 ) reactions to ingested foods 🥗 , etc..
• Oh, please don’t overlook the movement 🧘♀️ / exercise 🤸♀️ (lifestyle) half of the programme. So many of us get so focused on just the food 🥙 half, we forget about the exercise half! 😳 🙃 🤭 [If your daughter is already active, enjoys sports or physical activities of whatever kind . . . she may need no encouragement in that area & the exercise half will take care of itself.🤞😊 ]
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[Oh, as an aside: merely be aware of how ‘truthfully’ accurate we’re being with what we say we’re ingesting & what we’re actually ingesting . . . 😯 🤭 😁 Sometimes we’re not exactly ‘accurate’ with ourselves (& others) in our recollection & recounting of what we’ve eaten (for whatever reasons) or we inadvertently let poor habits creep back in. 😳 🤭 Sometimes, as Dr. John McDougall says, what we’ve actually eaten is reflected in our body; our body ‘reveals the truth’ — despite what we ‘say’ we’ve eaten. 😯 🤭 😄 (Merely a thought. 🤔💭 ) And, of course, we can do everything ‘right’ — follow the process "to the letter" — yet still have difficulties bubble up along the way. (It’s not a ‘blame game’ by any means, it merely means we’ve more "troubleshooting" to sort through along the way.) Sigh . . . It’s not necessarily ‘smooth sailing’ ⛵️ for everyone. It’s just plain difficult at times. That’s the reality of ‘managing disease’ throughout our lives. ☺️ 😬 😁 Things change over time . . . We can slip, ‘fall off the wagon’, or have a great deal of difficulty working through a rough patch. Yet, ultimately it’s up to us to pick ourselves up & try & ‘try again’. You’re setting up your daughter (laying a solid foundation) for her to build upon for the rest of her life. You’re teaching her resilience — how to ‘bounce back’ from inevitable slips & falling down. You’re setting her off on a healthy path. 👍👍 Please be proud of your efforts, Kellthebell, as well as hers. 🤗 👏 💐 ]
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• 90% vegetarian, gluten and dairy free is excellent!! Well done. 👏 👏 To take a step further toward ‘managing disease’ it’s strongly suggested 100% unwavering compliance to achieve optimum results that our body will allow. It’s up to each of us as to ‘how far’ we’d like to go. It’s truly an individual decision. It’s in your daughter’s hands ultimately. [Listening to Christine & Laura’s podcasts might provide some useful insights & tips? 🤔 Mother to mother 👩👧 ↔️ 👩👦.]
[Speaking solely for myself, the 100% unwavering compliance has proved accurate for me; if I make errors (inadvertent or not), I pay for it in pain 😫. Pain is a merciless ‘motivator’. If I want to stay out of pain (improve my QoL), I need to be ever-vigilant. 🧐 The ‘pain motivator’ keeps many of us on the ‘straight & narrow’ path — ‘safe’ foods coupled with activity/ movement/ exercise, stress reduction, etc..]
• Fortunately, with experience, we make fewer errors & learn how to more readily ‘recover’ from lapses.
• And, over time, a wider variety of foods (& compliant recipes) open up to us. The unseen truths that many are not aware of (& are rarely spoken of) delicious foods/ meals open up to us as our gut healing progresses & out tastebuds 👅 change to enjoy simple, wholesome foods. [Who’d a thunk it?! 😯 🤗 😂 ]
• There’s no ‘lifetime of deprivation’ as we progress through each phase (as some folks seem to think 😆). Quite the opposite. Each phase opens up more choices, more enjoyment, more well-being . . . 🤗
• You & you’re daughter will learn & experience along the way that ‘safe’ food choices broaden out (& are remarkably tasty 😋 ). Learning new meal preparation 🥗 & cooking 🍛 techniques 👩🍳 is part of the enjoyable ‘learning curve’ 📈 .
• And, we learn what are ‘safe’ food choices to order if/ when we choose to eventually eat out at a restaurant 🍱 (or order ‘take away’). And, we learn how to order foods (no oil cooking requests) to ensure foods prepared are safe for us.
• A LOT to learn 📚 over time, yet well worth the effort. You reap long-term rewards down the road for near-term, short-term, ‘temporary sacrifices’.
You & your beloved daughter can do it, Kellthebell. ☺️ 🙏 🍀 🌺 🌞
There are living, breathing examples of people — of all ages (from young to old) — who are doing it.
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Thank you so much Kai, I cant tell you how much your guidance means. I'm embarrassed to say I fell into a rabbit hole and got in such a pickle that I made myself quite unwell through the stress. The psychology of it all is quite interesting and messed up, I book marked your comments but couldn't read it until now. I've been grounded this week with tremendous backache (literally immobilised), which I think was my bodies way of taking me out of the situation I was supposed to be handling. I hope it doesn’t become a habit, but it was all subconscious. So a belated thank you is coming your way for all the information above and beyond, I’m delighted now I have the strength to read it!
My daughter was booked into to hospital today to have multiple joint injections under a general anaesthetic. Its was cancelled on Monday due to me not being able to move! I would never choose to have that pain. It was as bad as giving birth. Anyway, last time I went under G.A I woke up too early (another histamine related anomaly) so I guess my fear has been taken out of the normal context. I knew she needed time, as her swellings up up and down like a yoyo and admittedly - while this has been the longest 'up' I needed a chance for the impact of the dairy to subside. She is not horribly swollen like she was when she was first diagnosed, she is still fully active and it only aches at bedtime or when I ask her to do something she doesn't want to do........ Admittedly she does seem ‘hypo-sensitive’ but that’s another post in another forum I’m sure. Her blood test continually show no inflammation this year, really ironically healthy. Only her physical exams reveal restriction, it’s not clear to the naked eye except on her fingers.
I know I need to make myself strong so I can be more use to her, we are having a lot of stir fry whilst I can't cook and nana has been banned from making pancakes! I'm happy to report the swelling has gone right down now since 100% resuming the Paddison Program, but we knew that would happen didn't we! So last week flare, this week healing. Hopefully for me too as she can't have me collapsing at her time of need! Stress is ridiculous, only helpful if its a motivator towards good. At least now we have identified another trigger and continue to tread carefully. I don’t know how I can contact the people you have mentioned, but I promise, I will study the links! Best wishes to you Kai.
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[Very welcome, Kellthebell. 🙏 😌 ]
Oh no 😔 🤦♀️ . . . stress does take its toll. I’m so sorry to hear of the immobilising back pain & hope 🙏 you’re recuperating.
(We’re ‘no good’ to anyone when we’re debilitated by pain 😩. I hope you’re being well looked after & getting the TLC 🥰 you deserve.)
If remembering correctly, one of the JIA-ers (it might have been Christine’s little boy Cole 👩👦?) that also didn’t have high inflammatory markers 📉 but was indeed manifesting disease. (Don’t quote me on that 🙃 .)
Anyhoo, yes, yes . . . waiting through the ‘effect of the dairy’ 🥛 🧀 to wear off sounds sensible. And, being sure not to ingest anything else that rekindles the flame 🔥 . Yes, sticking with the anti-inflammatory foods reduces, squelches, or keeps the simmering flame lower. 👍👍
Yes, those tell-tail signs (movement restrictions, swollen fingers ✋🤚 . . . ) are a giveaway ’all’s not right’. Thank goodness for the common-sense eye 👁 of your rheumatologist 👩⚕️ who doesn’t just focus on blood test results 💉 alone. 👍👍
Hoping 🤞 the plentiful stir fry is made with water or vegetable broth in place of oil ( healthunlocked.com/cure-art... ). (Just a gentle heads-up: oil can be a (nightmarish 😱) trigger for us. 🤯 😳 )
[Chuckling 😄 about the Nana 👵 pancake ban 🚫 🥞 .] If pancakes are cooked in an oil-greased skillet & then smothered with syrups/ sweeteners 🍯 . . . Oh boy, that’s an ‘invitation for trouble’ 😯 🤦♂️ . There’s workarounds & other tasty options to distract both Nana & your daughter with. If she/ they likes smoothies 🍹 , have a look-see: healthunlocked.com/healthye... . Breakfast smoothies can be tailored to her ‘safe foods’ no matter what stage/ phase she’s at in PP. Oh, & if Nana 👵 has a blender, that may well be a fun 🤗 thing for both of them to do together 🤝 (provided Nana sticks to the allowed safe ingredients list).
Hmm . . . am wondering if you’d consider adopting PP process for yourself too? 🤔 Wondering if that might help you as well? 🤔 Maybe help keep you both on an ‘even keel’ pain-wise? Especially the "reduce stress" aspect ( healthunlocked.com/nras/pos.... )? [Again, if remembering correctly, I think Alisa’s mum Laura followed the program along with Alisa & felt better for it!! 🤗 Merely an idea💡.]
You don’t need to be ‘out of commission’ not only for your daughter’s sake but for yourself. Good gawd, Kellthebell, I can’t imagine how stressful it is. 🤭 My heart 💓 goes out to you. [It’s bad enough when we’re debilitated by crippling pain, but to compound it (exacerbate it) with watching our child 👩👦 suffer is just overwhelming — too, too stressful. 😖 ] Hoping you’ve other trusted loved ones around 👪👩👩👧 who can help share the responsibilities. Sometimes stress eases if we can just ‘divvy up’ some of the excessive burden? 🤔
Keep hanging in there, dear lady. Keep hanging in there. 👍👍
Yes, it does get better. ☺️ 🙏 🍀 🌺 🌞
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Consider sending a Private Message (PM) to andyswarbs as a starting point. These directions help explain How to Compose & Send a PM: support.healthunlocked.com/... [Andy is the bomb 💣💥 !! Extremely knowledgeable & sensible about PP. You’ll not find a more in-depth experienced person in these here parts. 😃👍👍 ]
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The PP Program is the roadmap — your touchstone. The closer you learn from & follow the roadmap, typically the better off you’ll be. (There are ‘exceptions’, of course, which require additional ‘tailoring’/ ‘troubleshooting’.) The experiences of the Podcast interviewees, as well as Clint Paddison’s shared experiences are invaluable. I’ve learned from each speaker; they’re a goldmine ✨⛏ of common sense tips ‘n techniques. We’re not alone.
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Just saw this most recent podcast episode of 11-year old Marcel (with help from mum Anna) turned around his JIA. 👏 👏
[Talk about ‘timing’/ ‘serendipity’!! 😯 🤗 ]
Juvenile Idiopathic Arthritis (JIA) Turned Around - Marcel's Story:
m.youtube.com/watch?v=cB6hf...
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☺️ 🙏 🍀 🌺 🌞
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I really enjoyed watching that and showed my daughter too. She's defintly making a more conscientious effort to eat cleaner now. I've been on some of the high dose anti-inflamitories that she's been on since hurting my back and I am determined to get her off this medicines that cause leaky gut, I can't described the gastric issues I've had, I now know how serious that tummy pain is. More celery juice happening in this house! Are you in remission now Kai?
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[Yes, thankfully so. 🙏 😌 And, am doing everything I can to remain so ( healthunlocked.com/cure-art... ). 👍 ]
Excellent! Thank goodness for Celery Juice!! 😋 😄
Delighted you & your daughter viewed Marcel & mum Anna’s 👩👦 interview together. 👍👍 Yes, Marcel is going to have a much brighter future (as a young fellow approaching teen years & on into young adulthood . . . ) than oh so many JIA-ers who are simply unaware or just ‘at a loss’ as to what to do.
Exactly! Those high dose anti-inflammatories that make us feel ‘oh so good’ in the short-term have a silent 🤫 backlash long-term. 😳 Best wean off — if & when possible — under medics 👩⚕️ watchful eye 👁 .
Since so many of these autoimmune diseases are progressive & can silently/ quietly affect our other bodily organs (not just joints) & not only through the disease itself but through long-term use of meds, we’re typically damaged/ debilitated further over time. We can at least attempt to slow down (or halt? 🛑 ) the progression & use medications judiciously.
Yes, yes . . . the sooner we become aware of the effect of what we put in our mouth 👄 has on our body, the more we’re able to influence the course of disease progression 🤞 . Per usual, there are ‘no guarantees’; all we can do is try & try again. And, when we improve our QoL (Quality of Life), what more can we ask for!? 😃
Best wishes to you & your girl, Kellthebell. ☺️🙏 🍀 🌺 🌞
Maybe one day we’ll see you & your daughter 👩👧 on a podcast 🎙 sharing your healing journey together!! 😃👍👍.
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Yes we need some girl power, stats show most kids with JIA are female, yet mainly boys have cracked JIA in thier youth. Sure I've read adults who have had JIA in the thier past have solved it as adults but it would be nice to address the imbalance. I wonder if hormones factor in there?
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Good question, Kellthebell. 👍
If remembering correctly, Dr. Richard Matthews podcast episodes ( paddisonprogram.com/?s=Dr.+... ) discuss female hormones, particularly in Hormones and Rheumatoid Arthritis with Richard Matthews (transcript: paddisonprogram.com/hormone... ):
m.youtube.com/watch?v=qMJZY...
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Aside: Did you get a chance to see JIA-er Katy's 2 year update - less drugs, massive health improvements?
m.youtube.com/watch?v=LU1PN...
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☺️ 🙏 🍀 🌺 🌞
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Well i’ll save that gem for when I get another breather, i’d like to say Kai, you are always bringing the meat to the table, you know the meaty good stuff but I can’t think of an equivalent in vegan terms! You are the kale does not cut it, the other things that spring to mind sound wrong. You are most certainly a brain I want to drain just sounds rude and vampiric!!! 🤪 I'm actually thinking of home schooling so I can get my daughters diet right, we are losing a lot of school time through constant blood tests and rheumi appointments so a flexible time table right now would suit our needs and I can ensure she doesn't miss out on the curriculum or healthy eating if I can control it around the disease whilst its active. Huge responsibility, but not impossible if managed correctly. This way I can ensure she get more exercise in the day too instead of twice week. 🤯🤔
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😂 😂 😂
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🥩 🍖 🍽
🧠 🧛🏻♀️
👧 👩🏫 🥗 . . . . 👩⚕️ 💉 ⏱ . . . . 🤸♀️ 🏃♀️ 🧘♀️
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👍👍 . . . . . . ☺️ 🙏 🍀 🌺 🌞
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See, I love that the emoji story had a happy ending! I throughly enjoyed the hormones podcast, although I'm going to watch it another two times and take notes! Wish us luck, possibility multiple steroid injections on Friday, were on the celery juice but its not enough time! Especially with the thunderous down pours we've been having which ensure her flares. By the end of summer after a few months of being very strict with the diet I'm sure we’ll be closer to our happy ending!
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Spot on! The ‘sciencey bits’ 👩🔬 require re-watching & note-taking 📝 to understand. Wishing you & your little girl 👩👧 the very best, Kellthebell. ☺️ 🙏 🍀 🌺 🌞 Please keep us posted on how you’re getting along. 👍👍
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Saw your posts/ replies, Hidden : healthunlocked.com/user/roo...
Yes. 👍👍
Please don’t be discouraged. 🙏 😌
Prednisone Made Me Nuts...