Hi everyone, seems a busy site! Hope you've managed to get rid of 'Mr Nasty' and can get on with the job of supporting each other, which is why I've just registered.Cordelia and many others sound amazing people!
Can anyone help with advice re: my daughter age 10? She was diagnosed with sero-negative polyarticular Juvenile Idiopathic Arthritis when she was 3. I firmly believe it was triggered by the MMR (measles,mumps, rubella) jab they routinely give children in the UK and she was prescribed Voltarol, then Piroxicam anti-inflammatories for 2 years. She then went into 'remission' for 2 years and was drug-free but then the disease started creeping back, very sneakily and insidiously. The Piroxicam started to give her tummyaches so we switched to Naproxen. She has been seeing a healer which relieves some of the pain and stiffness temporarily (has to be seen to be believed, he doesn't touch her but she starts doing all these wonderful graceful tai chi style movements that she just can't do when she is not near him). We've also tried homeopathy.This week we saw a new consultant who said, after checking her over thoroughly, that she is way past the help of NSAIDs, homeopathy etc. She now needs methotrexate injections weekly plus polyarticular corticosteroid injections under general aneathetic, which should relieve pain for 3 to 12 months. She is terrified of the thought of all the needles, bloodtests etc
Has anyone else gone/going though these treatments at this or similar age? Would you share your insights so that we can be as informed as possible? Are there any other complementary treatments that you can recommend in conjunction with the drug treatments? Any other advice? Many thanks for reading this - I feel a bit stronger just having put fingers to the keyboard!
Dee (BexMum) Thank you Cordelia, will try and contact Liz. Much appreciated and thanks for the speedy reply and warm wishes. We do feel we have been hit by a 10 ton truck and it so HARD not showing our fears for her future to Becky. I get the odd twinge in my left elbow - for Becky to have it in every joint EXCEPT her left elbow is agony for her. But she is so brave, she's an absolute inspiration to us as parents. Dee I'm also sending an email to Suzanne who has a daughter that has had JRA since 3. She's on AP (antibiotic protocol) for it and is doing very well. You might want to talk to her too. Hugs for you and her family. And I hope GoGo sees this thread. She's very into some of the things you mentioned in your post. She might know more natural things. Pip Hi Dee, My daughter had gen. anesthesia and joint injections just before age three and again right after she turned four. She was also on mtx at age three 1/2. I think your daughter will be able to tolerate those things fine, being older, and I hope they help her. Like Pip said, my daughter is on AP (Zithromax) and we have been very pleased with the results. She has no side effects from this treatment, but has had weird/opposite reactions to just about everything else we have tried. Because my daughter is not old enough for Minocycline, the med normally used for AP, it is difficult to find a dr. willing to treat her. If your daughter has her permanent teeth, she would be old enough for Mino. It is most commonly used to treat teenage acne, if that gives you any perspective. There is a lot info about AP on roadback.org. Thank you all for your responses, the support is much appreciated. Go-go 'It sounds like your daughter was getting Reiki or Suzanne - thank you for this info, I hope your daughter continues to do well. I have never heard of AP and it is not a treatment that I can find being offered in the UK. I think we will enquire when we see our consultant. Is it something that can be taken after the mxt and joint injections or instead of - do you know? Many thanks again everyone Dee Dee - we were told that AP is not contraindicated with any traditional meds. I know some adults want to stick strictly with AP and some need the relief of traditional meds until AP kicks in (it is usually slower, although when my daughter was first very sick, they were sure she had an infection and treated her with antibiotics; she improved dramatically overnight in the hospital, they wrote that on her discharge papers, but when no infection was proven they stopped them). It sounds like your daughter does need something to help her function right now, so hopefully what you have decided on will help. Minocycline is listed as a DMARD by the American college of Rheum (search it on rheumatology.org). If I were you and was interested, I would print something from that site to take to the dr. I also see your daughter has had stomach trouble on NSAIDS. The put my daughter on Prevacid when she was on Motrin, to protect her stomach. We had to double it when she went on Mobic, because that was more harsh for her. You might ask your dr. about an antacid. We kept her on for mtx, too. The drs. thought it was good idea, since it can cause stomach upset, and she never had too much trouble with that. Thank you Janie and Suzanne (and Pip for the PM). I will go so well-armed to see the Dr, he'll know I'm one of 'those parents'. In the Uk there is still a culture of 'doctor knows best' so I'd best roll up my sleeves. I feel a lot less helpless and useless than I did yesterday - that's down to you guys...
There's a 'Margaret Hill' clinic in the UK that I'm going to try getting an appointment at. She wrote a book called Curing Arthritis the Drug Free Way - involves diet, acid eliminator (mix of cider vinegar and honey) and mineral/vitamins supps. Anyone heard of it/tried it? The Dr said diet wasn't an issue but what do they know? Becky had an orange for the first time in months last Wednesday and one on Thursday. Thursday night she had her first big flare in months. Coincidence? Thank you all again Dee x I think the diet connection is HUGE but I'm coming from it on a different angle. I think we screw up our intestinal flora and just don't get it right so the baddies get a field day. I think you can really control things with diet but you're still not getting rid of the original infection. Personally, I'm looking into both ways now. I'm pretty sure I'd get rid of the last of that pesky RF and will be in remission with diet changes. Is it possible to be allergic to citrus? I don't think so, but it doesn't mean you can't be hitting the gut with things your body is not used to and causing a flare. if I'm wrong about the citrus, people will jump in. Many APer's use a citrus drink to help with herxing and heal the stomach. I think GoGo just posted a link about the honey being really good for us. Hugs, Pip
I am so sorry to hear about your daughter, honey. You must be in terrible shock. This disease tough enough as an adult, facing it as a kid...well that is something I can't imagine.
Contact a member called Grammaskittles, her real name is Liz. If you do a member search you will find her. Shoot her a PM I am sure she would be happy to talk to you and help in anyway she could. Liz has RA but her youngest daughter has JRA. If she can't help then she will know someone who will.
In my opinion a holistic approach is the best way to approach this disease, yes medication of some kind but alternative therapies too, also movement and things like massage.
I can't think of anyone else who could help expect Liz but I am sure she would be happy too.
Also I think Liz belongs to a board that is for parents of children with arthritis, I don't know which one it is but she will.
Take care and please vent, debrief and ask questions as you need too.
Take care.
Dee
I have a daughter Just diagnosed at 13 with Pauciarticular , Thankfully a much less serious form of JRA but scary still
I just sent you the link in a PM to the board that
Cordelia was referring to.
you will find much help there.
hang in there and my thoughts are with you
True
with extended insurance! (I've been seeing a Traditional Chinese Medicine
practitioner who is doing Jaffe-Mellor on me---it's "hands on" with
acupuncture and stuff) It sounds like your daughter was getting Reiki or
Qi Gong. I haven't tried them but there is a teaching clinic at my local
hospital. I know because they told me in arthritis school, so between that
and the hospital school I figure there must be something to it. The nurse
that told us about it was REALLY into it and swore by it, but it was more
for pain management than disease control.
I hope your daughter feels better soon and that you both get the support
you need. This thread has mentioned everyone I know with experience
with JRA. It must be so hard to be dealing with having a child with this.
Good luck to both of you!
Qi Gong.' I don't think her healer calls it anything except 'help'. He says he can't cure anyone, just help relieve some symptoms. She feels good for a few days after seeing him and has a monthly session. He doesn't touch her, just holds his hands above her joints, which move gently of their own volition. Then she stands and starts 'tai chai' movements while he is stood behind her about two feet away. She can't move so freely when she is not with him. He says he sees and feels something coming out of her into his hands, which he then shakes and there is a crackle like static electricity. Jaw dropping stuff that has to be seen to be believed. Even my ever cynical husband says there is something there that can't be explained but it works... even if only for pain management, it can't control the disease.
Copyright ArthritisInsight.com