Home Forums General Discussion update on my daughter

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  • #464031
    Suzanne
    Participant

    This is the time of year of my daughter’s juvenile arthritis onset, so it always brings back a lot of memories. 14 years ago, we were being told she would be in a wheelchair if we didn’t put her on Enbrel. We kept getting the Wheelchair Speech for several years from different ped rheums. We never put her on Enbrel and not only is she not in a wheelchair, she just finished lifeguard training and will start her first job soon. They train by taking turns rescuing each other, and she had a harder time as the victim than as the rescuer. She ended up putting a pony-tail holder on her bad wrist so they would know not to pull her out by that one. She could do everything she needed to do as a rescuer with no problem.

    If a doctor is using fear to get you to use a medication, be very cautious. Something isn’t right if that is all they have to convince you.

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

    #464033
    whaleharbor
    Keymaster

    God bless your daughter and you. I am so glad she is doing so well. Hugs. Interesting that she is on azithromycin and not minocycline. I know several antibiotics work for me (what do I know?) points to the “infection connection.” Hugs.

    100 mg Minocycline every other day (Actavis Brand)

    #464034
    Spiffy1
    Moderator

    This is a great thing to read! Have you written up her experience in the stories section? If not, it would be great if you could. It would be an inspiration to so many.

    Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes, etc.
    RA Factor 71 in Jan 2015 down to 25 as of September 2017
    DR4/DQ8 HLA...biotoxin illness
    IGG food allergy to wheat, egg, and dairy...probably all grains
    Vit. C&D, probiotics, milk thistle, turmeric, fish oil, methyl b 12, methyl folate, digestive enzymes, Candisol, Ubiquinol, berberine, chlorella, Moducare, LDN, monolaurin, Triphala, Patriot Greens, Paractin
    MTHFR compound heterozygous
    Igenex IGM positive Lyme, minoMWF

    #464038
    Suzanne
    Participant

    God bless your daughter and you. I am so glad she is doing so well. Hugs. Interesting that she is on azithromycin and not minocycline. I know several antibiotics work for me (what do I know?) points to the “infection connection.” Hugs.

    Thank you, whaleharbor! When she was finally old enough, she did go on minocycline for almost a year. She did very well on it and her CRP went to normal for the first time (it stays just out of range on zith). At a regular eye exam, they saw that her optic nerves were swollen and I knew where we were headed (but as usual nobody believed me). Soon after, she developed debilitating headaches due to intercranial pressure and she had to stop minocycline. It is drug-induced so stopping the drug ended the side effect. In her opinion, minocycline is the worst drug she has ever been on (mind you, she was very young when we tried some traditional drugs) – until I remind her that she has not had any joint flare since taking it and we only have to go to her specialists every six months now for uneventful appointments. I don’t regret putting her on it because we knew the risks, and there was definitely a comfort level that the most common side effects are drug-induced and will resolve by discontinuing the drug. My only regret is that she couldn’t stay on it. I think I would be able to believe that she was cured by now. Thankfully, she didn’t lose anything when she had to stop it. It is a rare thing (like having to pretend to be a drowning victim and being pulled out of a swimming pool) that reminds us of her disease. For so many years, it was all I could think of.

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

    #464039
    Suzanne
    Participant

    This is a great thing to read! Have you written up her experience in the stories section? If not, it would be great if you could. It would be an inspiration to so many.

    Thank you, Spiffy! I tried to add this to her story in the Personal Journeys section, but it is locked now. I really liked to be able to add things along the way because soooo much has happened to get us where we are today.

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

    #464040
    Spiffy1
    Moderator

    Oh my goodness. We will try to check on the reason for this. So happy she is having good quality of life. It is such a blessing!

    Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes, etc.
    RA Factor 71 in Jan 2015 down to 25 as of September 2017
    DR4/DQ8 HLA...biotoxin illness
    IGG food allergy to wheat, egg, and dairy...probably all grains
    Vit. C&D, probiotics, milk thistle, turmeric, fish oil, methyl b 12, methyl folate, digestive enzymes, Candisol, Ubiquinol, berberine, chlorella, Moducare, LDN, monolaurin, Triphala, Patriot Greens, Paractin
    MTHFR compound heterozygous
    Igenex IGM positive Lyme, minoMWF

    #464041
    Luck20
    Participant

    Thank you so much for sharing that beautiful story. Its so moving! Its a joy to hear of such a wonderful success! I’m so glad you took the time to share this. It means so much to hear others have recovered and are thriving. 🙂

    Originally +Ana May 2018 (now negative Jan 2019), scleroderma or uctd, Morphea (now mostly gone!), Myositis ( better now) Probable Lyme w/coinfections, had Bartonella marks that disappeared,
    Mild reflux, mostly gone,mild ild, skin hardening (continued softening and some parts normal again) Impaired liver function, now normal after 1 year and CK, LDH all normal again, 14 mo after starting ap.

    Minocin m-f 2x, antibiotic rotation, ldn 4.5, cellcept 3000, probiotics, Monolaurens, Olive leaf extract, fish

    #464044
    Parisa
    Participant

    Suzanne,

    So happy to hear your daughter continues to do well.

    Parisa

    #464045
    Mountains
    Participant

    I’m sooo grateful for your post. As you know, we are just starting on our AP journey with our 12-year-old daughter (today is one month since 3 days of Clindamycin IV and starting Azithromycin 250mg MWF). Any success anyone reports is encouraging but hearing accounts of children getting their lives back using AP is especially comforting to me. Thank you for posting!!

    #464060
    Suzanne
    Participant

    Thank you Luck, Parisa, and Mountains for your kind words. I will link the old Personal History thread, to give an idea of some of what we have been through to get to this point: https://www.roadback.org/forums/topic/suzannes-daughter/ When I read it, I see some things I had forgotten about myself! Please everyone, keep good notes. So much happens that it is hard to keep straight. Putting it in writing in the moment often becomes very valuable down the road.

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

    #464061
    monmar
    Participant

    Wow thank you so much for this post. I was diagnosed at 19 with JRA. Was told the same thing, if i didnt continue with immunosuppresants then i’ll end up in a wheelchair. Unfortunately at the current moment im quite disabled. I only discovered AP therapy 2 years ago, where my RA got worse and only NOW have I gotten on the proper dosage. Already one 6 weeks into new treatment plan and I’m seeing incredible results. Pain is slowly melting, which means swelling will start go down soon too. Just curious what your thoughts are on leaky gut. I’m getting A LOT of criticism about it. I’ve done all the diets and none of them made me feel as good as AP therapy hsa. Everyone is so stuck on this leaky gut stuff, i really never know how to answer. How is your daughters gut health? Thank you again for sharing, has really given me lots of hope for my future!

    #464062
    lynnie_sydney
    Participant

    Thank you, Spiffy! I tried to add this to her story in the Personal Journeys section, but it is locked now. I really liked to be able to add things along the way because soooo much has happened to get us where we are today.

    Hi Suzanne
    When the new website was created, the Foundation wanted (if at all possible) to bring the Forum “in house” rather than have it as a separate entity. We were told that was possible with the Forum, but not with the Personal Histories section – to make both active would have overloaded the one system. So the Personal History section was brought over “as it was” for historical reference purposes only.

    I think (as you found) that the greatest benefit of that section was for personal journalling (because my, how we forget!). I certainly found it tremendously useful in that regard.

    But I would urge you to put something up about your daughter’s journey in the Stories section. Her/Your long journey will be of such use to those just starting out. And those stories don’t disappear from view, like personal history threads did – and you can post updates to it at any time. 🙂

    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)

    #464098
    Cheryl F
    Keymaster

    Your story made me chuckle. I remember one time, about 18 months into Jess’ recovery, she was seeing Dr. Trentham, but our GP really wanted her to have a rheumy locally, so we agreed to an appointment. At that appointment, which was at a time when Jess was in complete remission due to minocin, this doctor used the scare tactics. He said, “you know, minocin can cause drug induced lupus.” I said, “yes I know!” And I continued, “I also know that drug induced lupus is NOT the same a lupus and it will go away when the offending drug is discontinued.” He continued to try to scare us that Jess might get lupus, I then said, from what I’ve heard, I don’t think lupus is worse than scleroderma with lung involvement! I think we will stick with the minocin. That was by far not our last run in with a doctor, in fact we had one yesterday! I am too tired these days to even debate it with them, I just look at them and let them talk and then say, are we finished now? And then I go and do whatever treatment I intend to do anyway.

    So glad you did what you knew was right for your child. Not sure if you saw a post I made a few weeks ago, I get another ride on this merry-go-round, my younger daughter (who you met when we had dinner together) has been diagnosed with linear scleroderma (we don’t know yet if it is systemic).

    All the Best~

    Cheryl

    #464102
    Luck20
    Participant

    So sorry to hear about your other daughter Cheryl. I’ve read you saying it before, but I was completely speechless on what to even say. I can’t imagine as a mother having to go through this twice… I’m so sorry.

    Wow, a dr tried to scare you with lupus? Do they say that to the parents of kids with acne? I think scleroderma is far more risky than acne! Sometimes it just doesn’t pay to try to reason with people.

    Originally +Ana May 2018 (now negative Jan 2019), scleroderma or uctd, Morphea (now mostly gone!), Myositis ( better now) Probable Lyme w/coinfections, had Bartonella marks that disappeared,
    Mild reflux, mostly gone,mild ild, skin hardening (continued softening and some parts normal again) Impaired liver function, now normal after 1 year and CK, LDH all normal again, 14 mo after starting ap.

    Minocin m-f 2x, antibiotic rotation, ldn 4.5, cellcept 3000, probiotics, Monolaurens, Olive leaf extract, fish

    #464103
    Luck20
    Participant

    Monmar, I have mixed feelings on the whole leaky gut thing too. Its frustrating. I’ve done the diets too, made radical changes and for quite awhile gave up gluten and dairy. I don’t disagree on some of the overall ideas of the ‘best’ diet,I just think sometimes nothing beats the proper medications at the proper time and many medications are just not gut friendly. Its all a matter of a persons situation and what your up against.

    The disconnect between alternative and mainstream medicine also concerns me and I fear alternative medicine can have its own problems as well at times.

    Originally +Ana May 2018 (now negative Jan 2019), scleroderma or uctd, Morphea (now mostly gone!), Myositis ( better now) Probable Lyme w/coinfections, had Bartonella marks that disappeared,
    Mild reflux, mostly gone,mild ild, skin hardening (continued softening and some parts normal again) Impaired liver function, now normal after 1 year and CK, LDH all normal again, 14 mo after starting ap.

    Minocin m-f 2x, antibiotic rotation, ldn 4.5, cellcept 3000, probiotics, Monolaurens, Olive leaf extract, fish

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