Anyone with a small child on AP?

[CynthiaR]

My 2 year old son started AP 5 weeks ago. Zithromax M/W/F. Doing great!

[lynnie_sydney]

Hi Cynthia and welcome to the RBF Forum though so sorry you have a 2 year old with JRA. We have a long-time Forum Member who posts as ‘Suzanne’ whose daughter has JRA – I think she is now 9 years old.
I believe her daughter was around 2 when she first noticed symptoms. You can read her Personal History story here:
viewtopic.php?f=3&t=231&hilit=young+child
Suzanne may know of others who have younger children, you may like to Private Message her (PM) if she doesnt see this thread and answer. To send a PM go to where it says ‘0 new messages’ then send your message to Suzanne (BTW messages stay in your outbox until recipient picks them up)

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)

[evalon]

Hi…so sorry to hear of your situation…my daughter was 18 months when she was diagnosed…she was successfully CURED with small doses if prednisone, long term abx, and the love and support of the people here. I don’t knwo where we would be if this foundation didn;t exist to carry on Dr Brown’s work (a saint in my eyes) Pleasee, email me direct and we cna talk…your littel one WILL be okay!!! You came to the RIGHT place!!! ev (yvette) evalon@aol.com

[Suzanne]

Hi Cynthia,

Sorry you had to find this place, but hopefully it will help your son as much as it has helped my daughter. She was diagnosed with severe poly jra at age two. We were told at three different med schools that she would be in a wheelchair if we did not put her on Enbrel, but after following the outcomes of people who used Enbrel, etc., we chose a different path.

Seven years later, she is as far from wheelchair-bound as a little girl could be! In just this month so far, she ran a 5k, danced in her recital (and her teacher wants her to move to a class with 4th-8th graders next year), and started swim team. She has missed no school due to illness since before Christmas (and then it was ‘normal’ illness). She has been able to maintain her favorite activities all these years, as well as adding new ones. She really enjoyed basketball this winter, so she is going to a basketball camp this summer.

She has never gotten as sick again as she was when she was diagnosed. Not even close.

She still has arthritis (as do most with her diagnosis, no matter what meds they use), but she has the life of a healthy child. I need to update my sig line, because we stopped Plaquenil and now she is only on Zithromax Mondays and Fridays.

Good luck to you and your son! You can pm or ask away on the board – actually using the board might benefit others out there who shy away from posting (just remember not to post dr’s name on the board per RBF policy).

Take care,
Suzanne

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

[Eileen]

Hi Cynthia,

Sorry to hear about your little one with JRA. Not pleasant for him and certainly overwhelming for a mom and family. Has your son been evaluated for Lyme disease and co-infections? The reason I ask this is that dosages for AP for JRA and Lyme disease are much different. Then you have the co-infections thrown into the mix making it even more complicated. My oldest son was diagnosed w/LD and co-infs. at 2 3/4 yrs. old. My youngest just diagnosed about 6 months ago. BOTH ARE DOING VERY
WELL!!! 😀 Take comfort that kids do much better than adults. Their immune systems are new and haven’t been beaten up like adults. The sooner you start, the better they get. It will take time though. Expect the usual lumps and bumps along the way.

I’m glad you’re here — ask any questions that you would like. Pleased to give you a hand with this. PM me if you’d like.

All the best to you and your little one.
Eileen

[Suzanne]

Cynthia,

How is your child doing?

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

[CynthiaR]

Thanks to all of you who led me on the right path for my son. I regret that I have not been on the forum for so long. All those Dr. appointments, blood work, tests and just general craziness took up most of our time in the beginning. I am happy to say that James is doing GREAT! He had a negative Lyme test. He is on his 5th week of Zithromax (M/W/F). I think we have his “leaky gut” under control with probiotics twice daily. He is also doing physical therapy which helps him a ton. He is a happy, active boy and I am already seeing a difference in him since starting the AP. He is standing straighter, and his knees do not swell up like small baseballs like they did in the beginning and he has a greater range of motion. He still has a long way to go but I am so glad for the positive changes that I have already seen. THANK YOU, THANK YOU, THANK YOU to all that replied to my first post. You guys are GREAT!! I know that my son would not be as well and as happy as he is today if I had not found this forum!!! I will be on the forum at least twice a week now for sure!! If any newcomers read this please do not hesitate to post questions. EVERYONE on this forum is here to help and encourage each other. Hope all is well with everyone here. Talk to you soon! 🙂

[Suzanne]

Thanks for sharing this great update!

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

[CynthiaR]

This post is for “A Friend”. Thank you for your PM. (I am unable to PM anyone yet for some unknown reason). I appreciate the information about yeast. You hit one of our problems on the head! My son had a Comprehensive Stool and Digestive test done recently and it showed that he had a high amount of Klebsiella in his gut. That explained alot. 🙁 He is on probiotics twice a day which has made a huge difference and he is no longer on dairy. We are also cutting out starch and gluten. I am still learning all about this and many other subjects. It is quite a bit of information to take in all at once! I am knocking out one issue at a time. Klebsiella and starch are my current topics! lol. Thank you for the current and any future suggestions! Everyone have a great week!
CynthiaR

[lynnie_sydney]

This post is for “A Friend”. Thank you for your PM. (I am unable to PM anyone yet for some unknown reason).

Cynthia – new Members have to post 3 times before they are able to PM another Member and the first 3 posts also require moderator approval nefore they can be seen on the open forum. Both these measures are to help prevent SPAM getting through.

You should be able to use the PM function now as I think this was your third post.

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)

[CynthiaR]

I am happy to say that after only 5 months of AP, we took James off his Zithromax last week. He has progressed by leaps and bounds in such a short amount of time! The real test has just started though. Cross your fingers and toes and pray he does not have a flare up over the Winter months. (luckily here in California we have very mild Winters) I must say that I am excited but also a little nervous. I will be watching him closely everyday. We always talk about our experience during AP but does anyone have any advice or stories about when they stop AP? Thank you. Have a great day everyone!

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