Please help ! Daughter with JIA 5 years old

[lynnie_sydney]

Hi Zeljana and welcome!
Your post has been moved into the area whether other users can reply. Also confirming that your email was retrieved – but think this forum is probably the best place for you to hear about others and look at some options.

Firstly, you may like to look at a recent discussion about JIA = especially the posts from parents who have been in your situation with a young child diagnosed with JIA. I’m posting the link below that you can click on to read:

viewtopic.php?f=1&t=7261&p=61351#p61351

I’m sure others will chime in when they read your post. So please stay around. This is a very supportive place and I’m sure there will be some good suggestions for you to consider.

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[Maz]

@Zeljana wrote:

I have 5 year old daugter with JIA.She have JIA since she was 2,5.We have try everything and she is still not in remission.At the moment we are on AP with erythomicine 2×200 mg daily since dec.2013.We dont have AP dotors in our country so I dont know if it is the right one but I read that erythromicine is for small children.
Does anyone has experience with this antibiotic?

Hi Zeljana,

There are a couple of parents of children with JIA who still occasionally frequent this forum – user names Evalon and Nuket – so if you post one more time on this thread (spam preventative measure), you will then be allowed to private message them by clicking on their user names in the following discussion threads and then when their profile boxes show up, you can select “private message” to send alert them to your discussion thread or to speak privately with them:

Nuket is a Canadian mother of a 9 year old with JRA (medication Dr. F. put her daughter on with dose is listed in her signature line:

viewtopic.php?f=1&t=10238&p=73898&hilit

Evalon is an American mother of an 18 month old (now 5 or 6 years old) with JRA:

viewtopic.php?f=1&t=8839&p=67044#p67020

Also, here is the testimonial for Evalon’s daughter’s remission story on the main RBF site:

https://www.roadback.org/index.cfm/fuseaction/community.display/display_id/518.html

If it would help, Zeljana, I’d be happy to send you the contact info of Dr. S. in Iowa who has seen many JRA/JIA patients and is very kind to consult with doctors anywhere in the world on antibiotic protocols (AP) to use for their patients. He will also answer patient queries by email. Dr. S. is a Doctor of Osteopathy and is now semi-retired, but received guidance on the therapy from Dr. Brown because of a young patient who came to him with arthritis. There is a chapter on Dr. S. in “The New Arthritis Breakthrough,” where you can read his story and how he got into treating rheumatic patients with AP.

Also, just thought to mention that Croatia also happens to be a country where Lyme disease is pretty endemic. I spoke with a mother of a teenage son who had scleroderma and later discovered he had chronic, persistent Lyme disease all along. If there is any chance your baby girl may have been exposed to Lyme disease or other tick-borne infections, it may be worth your while to look into seeking out a Lyme Literate MD. The reason for this is because ticks pass multiple infections and each may need to be addressed separately with various antimicrobials. Just a thought to consider. 😉

PS. This mother also came back to share her daughter’s JRA remission story!

viewtopic.php?f=1&t=5412&p=50095&hilit

[Jan Lucinda1]

There also is a mother named Suzanne whose daughter has JIA. Her story is on the personal history thread under ‘Suzanne’s daughter’.

[Maz]

YES ! PLEASE send me contact info of Dr.S.! Thank you!

Hi Zeljana,

Just sent you a PM (private message) with Dr. S.’s contact info. To retrieve it, just click above where it says (1 new message) beside your User Control Panel. 🙂

[Suzanne]

@Zeljana wrote:

@Jan Lucinda1 wrote:

There also is a mother named Suzanne whose daughter has JIA. Her story is on the personal history thread under ‘Suzanne’s daughter’.

Thank you!

Hi Zeljana, my now 11 year old daughter is taking 250 mg azithromycin 2 x week. I’m not around much right now because we are in the middle of swim and dive team season! They still won’t say remission, but after nearly ten years we can be thankful she is stable and we haven’t added anything to the mix. I read daily about other children developing uveitis, psoriasis, Crohn’s, other various autoimmune conditions.

Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.

[Jan Lucinda1]

Hi Suzanne-

Good to hear from you!

Jan

[A Friend]

@Zeljana wrote:

Hi !

I have 5 year old daugter with JIA.She have JIA since she was 2,5.We have try everything and she is still not in remission.At the moment we are on AP with erythomicine 2×200 mg daily since dec.2013.We dont have AP dotors in our country so I dont know if it is the right one but I read that erythromicine is for small children.
Does anyone has experience with this antibiotic?

Thank you!

This post has been moved from the Personal History section where others cannot respond to posts (it’s for people to document their own progress on AP) to General Discussion area where people can respond. RBFV

Zeljana,
My heart goes out to you and your daughter. I had sudden onset uveitis a number of years ago, treatment for which I believe may be closely akin to treating JIA. I was fortunate to know about Dr. Emil Wirostko at that time, and my AP physician arranged an appointment with him for me. Dr. W was one of the foremost research and treating ophthalmologist for these diagnoses. Unfortunately, he died suddenly of an aneurysm a few years ago. There is information on the Road Back about his work. I am not knowledgeable at this time if there are other treating ophthalmologists using protocols such as Dr. Wirostko used. I have kept information about the medications and use which he prescribed for me, just in case it is needed in the future.

Some of the longtime AP physicians (one I know well in Iowa and one in Riverside, CA I’m familiar with) may have such information — and so may Maz and other leaders on Roadback. Two of Dr. Wirostko’s adult children are also ophthalmologists, one practiced for a time, and now both are involved in research. I’ve had contact with both of them in the past, and would love the opportunity to get updated information. Hopefully, this will happen in the near future.

From a search, these links found may add to our knowledge of treatments:
https://www.roadback.org/index.cfm/fuseaction/education.display/display_id/106.html
Mollicutes, the Classification of Mycoplasma
by Emil Wirostko, M.D.
Excerpt:
The late Dr. Wirostko was a practicing ophthalmologist specializing in infectious eye disease and was affiliated with Columbia Presbyterian Medical Center in New Jersey. His research spanned 20 years and dealt extensively with MLOs as seen in ophthalmic disease such as uveitis in JRA patients.
Mollicutes or MLOs are hopnoids, the most common element in nature. MLOs are the mycoplasmas of the plant. According to the National Geographic, July 1988, an MLO lives within the cell, is not culturable, is intracellular and transmissible. It responds to antibiotic treatment

[Anonymous]

Hello Zeljana,

I am sorry to hear about your daughter. I am sending you my phone number if you want to talk.

My daughter is doing good. I do not see any visual sign nor hear any complain from her. I am not sure if that means remission. I would like to hear that word from a doctor. Her only other sign was ANA being slightly up when she start having joint issues.

She is on gluten free and no milk diet.

We are going to Riverside for another check up soon.

Please do not hesitate to call..Nuket

[Suzanne]

@Zeljana wrote:

Hi Suzanne!
Thank you for your help!
I am happy for you and your daughter but also sad because as I can see you are fighting this monster for 10 years now.Every day I am hopping for a miraccle and that something will work for my Ema.In our country we having like pandemic of JIA and lots of parents are suspeccting on vaccination.I also have two more children ( 4 year and 7 month old) and I am afraid to vaccinate the youngest one.
Can you please tell what was her initial therapy?Wich antibiotics did she take? Does she have flares at all or completely symptoms free ?

Thank you so much for your help!

Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.

[Suzanne]

@Zeljana wrote:

Have you had any experience with your daughter on sweeting and gaining weight?I know that corticosteroids causes coushing effect but she is on low dose but she is overweight.She is eating normal.Maybe I must check again her TSH3,TSH4..

P.s.my PC is broken so I am writting from my Iphone and it is little frustrating and I apologize for my bad writting 😳

I also hate replying from my phone! Totally understand.

My daughter stopped gaining/growing in the months before her diagnosis, I believe because she was so sick. Once she started feeling better, she caught up but has never been overweight. She has only been on prednisone once for a short trial (made her worse) and we noticed her face filling out but not a lot of weight gain. I think with longterm use, it might have been a problem though.

Do you think the steroids are neccessary for your daughter to function?

Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.

[Suzanne]

@Zeljana wrote:

@Suzanne wrote:

Do you think the steroids are neccessary for your daughter to function?

I don’t know anymore.It seems that they are helping her when she is pain but now I have doubts.I have stopped giving them to her for some period and she was fine but when she can’t walk I am thinking that little dose can relive her pain and stiffnes.Yesterday I didn’t give her erythromicine after she had been taking it for almoust 6 month and I am affraid to leave her only on vitamins and probiotics.I am waitting for e-mail from Dr.S from Iowa so I can get some advice for antibiotic protocol from specialist.I am not sure if erythtomicine is a good choice although on RBF therapy section say it is for children and as I have been told she must get off corticosteroids slowely.
I am lost again.

I bolded the most important part – you cannot stop them suddenly or cold turkey, you have to wean. You definitely need to do it under a doctor’s supervision, and they might want to test her cortisol levels before she goes off completely.

When you say she can’t walk, I assume it is her knee? We have never had knee involvement, but I read about the most remissions – both traditional and AP – when it starts with one knee. I met a mom out here in the real world whose daughter got remission on NSAIDs alone. Was your daughter on Motrin (ibuprofen) or naprosyn before you went to steroids?

I hope you hear from Dr. S soon and he can give you some things to ask your doctor.

Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.

[Suzanne]

I’m so sorry and it sounds so much like my daughter – NSAIDs, mtx, steroids don’t help and it spreads when she is on them. When they would want to go to a biologic, it never made sense to me. If mtx made her worse, and you have to take mtx with a biologic, how is this a good idea? They would say she was going to get worse anyway, but yet off the mtx she is stable.

My daughter is also asymetrical like yours. They seem to expect to see both wrists, both ankles, etc.

I hope you will find the right answer soon. We would have considered a biologic if my daughter flared and couldn’t walk. Thankfully, azithromycin has kept her stable and I was able to point to the labeling of the biologics for JRA. They reduce the signs and symptoms, but they are not labeled to stop progression. We didn’t need a drug to help fatigue or pain.

Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.

[PhilC]

Hello Zeljana,

This information may be helpful:
The “No Nightshades” Diet

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[A Friend]

@PhilC wrote:

Hello Zeljana,

This information may be helpful:
The “No Nightshades” Diet

Phil

Phil, Zeljana… That sounds like a good suggestion. In one of Dr. Sherry Rogers’ books, she describes how sensitive she discovered she was to nightshades… and that they caused terrible bouts of pain for her. (Dr. Rogers has five medical degrees and wrote that she had to get those degrees in order to learn how to treat herself.)

I believe her book on this subject is “Painfree in Six Weeks.” ( The other book I have of hers is “Detoxify or Die.” It has much detailed information in it about things to know when using the far infrared sauna, about replacement supplements, etc. These books in the past were not usually available at book stores, but only from Prestige Publishing. However, I just did a search for a link for Zeljana and found this link on Amazon.com: http://www.amazon.com/Pain-Free-Weeks-Sherry-Rogers/dp/188720203X

Hope Phil’s suggestion helps your little one. The title he gave made me want to read it. Dr. Rogers wrote that getting the nightshades out certainly was key to her bouts of terrible pain.

Hang in there,
AF

[A Friend]

@Zeljana wrote:

Thank you!
My daughter was on the elimination diet for about 1,5 years.Before this diet we have done the test on her intolerance on food from blood form two different labs and the results was different.We have also do the tests from her stool ( amoung others they have find candida). We have started eliminination diet ………….We did elimination for year and year and half and also she was on this diet in nursery since i aranged is with the nurse there but there was no progress.Poor kid did not eat ice-cream all this time, neither sweets wich is fine , watrmelon in the summer etc… Unfortunately nothing did not help. 😕

Zeljna,
From what you wrote above, the biggest red flag for me was the finding of candida. This does not surprise me (because of my own first two years of chronic illness, and I had no visible signs of it). What helped me “begin” getting better and back on track was a new friend who with her husband had opened a health store. Their young daughter had been chronically ill for several years, and they had gone the usual route with medications. One day the daughter asked her mother if she were going to feel that way for the rest of her life… and if she was, then she didn’t want to live any longer. My new friend said she and her husband kinew they had to find another way. And they did, and it was through what she would then recommend I read and then come back to talk with her.

At that time I’d been trying to get well for two years. My doctor had prescribed antibiotics for 10 days each time I would have sudden onsets of illness about every 4 months. I would feel good again for about 4 more months, and then would suddenly become very ill again. I didn’t know about taking probiotics to replace the good flora wiped out by the medications. Without good flora to rebuild what the body must have, our body can’t do what it needs to do.

I asked my new friend/store owner that first day I met her to guide me about supplements to purchase. She told me she didn’t want me to purchase anything, but she wanted me to take home her copy of “Chronic Fatigue and the Yeast Connection,” and then come back. I read it from cover to cover — and what an education that was. Dr. Crook (now deceased) was a pediatric allergist, and began researching and writing books on this subject trying “to get his babies well” — about 12 books in all at the time of his death. He established the International Health Foundation. In that book I read he gave specifics about things we should know and do at home. I encourage you to educate yourself. Also, some of the things I posted (and still have in my files) might be helpful… such as when we start taking/consuming things that cause a reduction in yeast/fungal overgrowth, we can begin having nightsweats and fevers while our body during its ritual nighttime period of metabolic detoxification works to cleanse itself — if we have enough needed enzymes and minerals needed. If the body lacks needed nutrients to safely neutralize and excrete toxins, then these may be stored in the body and further build up, with the body doing this to protect the kidneys which cannot repair themselves.

This has gotten too long, but I believe reading this book of Dr. Crook’s — or one of his other similar ones — will educate you on this subject and give you some simple (and not harmful) natural things to do. Since you have a friendly helpful doctor, hopefully the two of you can work together on this, if you choose to look into Dr. Crook’s work.

Prayers for you and your daughter,
AF

[Author]

Posts