Home Forums Personal History and Progress Threads Suzanne's daughter

This topic contains 14 replies, has 1 voice, and was last updated by  Suzanne 4 years, 2 months ago.

Viewing 15 posts - 1 through 15 (of 15 total)
  • Author
    Posts
  • #300008
    Suzanne
    Participant

    I first noticed symptoms in my daughter prior to her second birthday (Spring 2005), but she was very sick before it was all put together.  She had an “all is well” two-year checkup on a Friday, but the following Monday we were referred to a pediatric rheumatologist.  She was in so much pain, she cried when I touched her.

    She was admitted to a children's hospital and treated for an unknown infection due to the way she presented.  We saw her improve after they started the antibiotics and this was also noted on her hospital discharge papers.  She stayed on Zithromax and Rocephin for 21 days.  But no infection was proven, and it was their opinion that it was a coincidence that she felt so much better.  Her sedrate was back to normal, and she did not complain of pain.

    So they had me thinking I was crazy for almost a year.  She was on Motrin 3 x day, and Prevacid to protect her stomach.  When she was prescribed Sulfasalizine, the literature they gave me said prominently that it may cause brain problems in children under two.  I asked about that, since she was only two, and when it was never answered, we didn't give it to her.  We tried Plaquenil, but she could not keep it down.

    I learned about Roadback in the spring of 2006, and realized I wasn't crazy.  I tried to talk to the ped rheum, again, about how she had improved with initial antibiotic treatment, and was told “but she didn't get all the way better”. 

    In the summer of 2006, she had a period of weird symptoms that were never explained (rashes, scratches, lost a toenail) and I stopped Motrin on my own.  This made no difference in her swelling and did not cause her to complain of pain.

    In August 2006, we saw an AP dr. and she went back on Zithromax (1 tsp. 2 x week).  We were so happy – her 'light' was back on!  We could see joy in her again – she was in constant motion, always dancing.  The first time we went back to the ped rheum, his nurses came out to the waiting room to say how much better she looked and telling me to keep doing whatever I was doing.  But, no change in her swelling or joints and the AP dr. supported the ped rheum in starting mtx along with Zithromax.

    On mtx, she had pneumonia and then staph.  It did not seem to help her joints at all, but the longest she had stayed on it was four weeks before getting too sick to take it.  We decided it wasn't worth the risk, if she could not stay well long enough to take it.

    We had xrays compared from Aug. 2006 to June 2007 that showed she was stable.  The AP dr. tried reducing her dose (1/2 tsp. 2 x week), but we saw more swelling within a month. 

    Our AP dr. retired, and we had to travel to see another one who was willing to treat a young child.  In January 2008, she went on a new dose of Zithromax 1 tsp. MWF.

    We never treat for pain and she never misses school or activities.  I can only compare her to her 'healthy' older sister at this age, and the only difference is that she takes less naps!  Her diagnosis is severe polyarticular JRA, and we are happy she is able to live such a normal life on so little medication and hope it will continue.  

          

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

    #310702
    Suzanne
    Participant

    I have some news to share.  They have added a new abx to my daughter's treatment.

    And by “they”, I mean the children's hospital, not the AP dr.

    Yep.

    After three years, we are back with Infectious Disease, at least temporarily.  The AP dr. ran some labs to rule out things he does not treat.  He does not treat Lyme, and she came back with Lyme titers.  Not titers only a LLMD would love.  “Meets CDC criteria” titers.

    (IgG:
    30 +
    31 ind
    39 +
    41 +
    58 +
    83-93 +

    Her IgM was negative, but had these results:
    30+
    39 ind
    41 ind

    HME panel negative, B. microti antibody negative)

    Am I saying she has Lyme?  Nope.  But everyone agrees these results are significant.

    Much to my surprise, the children's hospital had never tested her for Lyme.  Silly me, just assuming that when they test for Cat Scratch Fever, send you home with a brucellosis dx, then put you through neuroblastoma testing, they would have tested for the disease that was discovered when moms wanted to know why all their kids were being dx'd with jra.  Silly silly me.  My bad.

    I'm told it is possible that she has something something something that can look like brucellosis and/or Lyme in labs.

    They are testing her again, at the lab they use, which is the one that said she had brucellosis.  I said that was fine, if it made them feel better, but based on our experience….

    So in addition to her MWF Zithromax, they have added amoxicillin 3 x day for a month.  Our long, strange trip continues…..

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

    #310703
    Suzanne
    Participant

    It's been awhile since I've updated, and a lot has happened.  The good news is that during this time, my daughter still continues to thrive and lead a wonderful life – dancing, playing, and bringing home glowing report cards.  We continue to feel extremely blessed that she has such a happy, wonderful life despite her diagnosis.

    The second Lyme test came back negative, but they let her finish the month of amoxicillin.  Didn't hurt her, didn't help her.  She finished the rest of the summer and started the school year on Zith alone with no issues.

    She needed immunizations for school this year.  Live vaccines.  I had differing opinions on this for her.  Ped rheum and AP rheum said no live vaccines.  Ped said they were fine if she was not immune-suppressed, and she should get them.

    We really wanted her immunizations to be up to date.  I asked the advice of our retired AP dr. and he said to ask the ped rheum what would happen if our daughter was not immunized and went on immune suppressing meds later and was exposed to measles, mumps, rubella, or chicken pox.

    That question was not answered.   So we decided to immunize.

    She got the MMR first, and it was uneventful.  A month later, as we prepared to get the chicken pox vaccine, the school notified us that she was also missing polio and DTP boosters.

    (How can a child who goes to so many doctors so often get behind on her vaccines?  I digress.)

    I was told it was safe to do them all at once.  I believe it is for most children, but in my daughter's case, I wanted to spread them out.  We didn't, though.  It would have meant three more months before she was completely up to date and more letters to the school.  They said it would be fine.   She got them all the same day and if there was one thing I would change, that would be it.

    Thing started changing for her after that.  Not dramatically.  No morning stiffness, no treating for pain, etc.  I just knew things were different.

    She got more infections that required treatment.  She ran more temperatures.  Frequent stomachaches.

    After each illness, she would have more swelling and redness in her affected joints.  I knew we would have to make a change in her treatment and all this time we have thought the next step would be adding a biologic.

    But the next step has come after a series of different infections, and immune suppression at this point was very scary for us and did not seem in her best interest.  I asked the ped rheum about trying Plaquenil again, and he readily agreed to prescribe it.

    She hasn't been on it long enough to tell if it will help, but I do think she is at the point where I can say she will definitely be able to tolerate it.  She is actually having less stomachaches since starting it!

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

    #310704
    Suzanne
    Participant

    The fevers and the stomachaches are gone since starting Plaquenil.  She seems to tolerate it very well so far, but it did nothing for a finger joint.  The joint has been red, swollen, and painful since April.  Adding an NSAID didn't help, using Voltaren didn't help.

    I have been saying the finger and a toe (that is fine now) were different than her other arthritis, because they hurt.   Her other arthritis does not hurt her.  Each time I was told the same thing:  She has arthritis and arthritis hurts.

    We were ready to start pred for this one finger.  It was that bad.  Otherwise, her summer was great – swim team, a theme-park vacation, and two non-stop sight-seeing days in DC; she never slowed down.

    She had a TB test prior to starting pred, and the next day the joint turned crimson red and the skin blistered.  Again, she was treated for a cellulitis infection.

    The blisters healed and the color looked better, but not all the way, at the end of our ten day course of Cefadroxil.  Her other arthritis was doing better, too, and I asked if she can stay on it longer….. you all know the answer to that……

    So we planned to continue with our plans for prednisone or a steroid injection, because those were the only options we were given.

    At that appointment, xrays showed that joint erosion and cartilage damage had occured in a very short period of time.  The joint was aspirated (so far the culture is negative) and she was sent home on two big gun abx – Cipro and Clindamycin 225 mg 3 x day.  So far, she is tolerating them well.  She is off the Plaq and Zith while she is on them (two weeks).

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

    #310705
    Suzanne
    Participant

    The day after the Cipro and Clindy ended, she could bend her finger.  I almost died.  It was still not right, but it could bend.

    So I did something never do – made a call on the weekend.  I had Cipro left and asked if I could give it to her until our appt.  The on call dr. said yes.

    It was confirmed by exam and xray that her finger had improved, so they extended the Cipro another week.

    I have asked how they know it is the Cipro and not the Clindy that helped, but nobody knows nor have they said she should still be on Clindy, too.

    I've called twice to ask which meds she should be on next week when the Cipro ends; no answer yet. 

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

    #310706
    Suzanne
    Participant

    Wow, are they reading my posts LOL????

    After I posted, the nurse called and said she was supposed to stay on the Cipro AND the Clindy for TWO more weeks.

    Off to pick up the Clindy they called in.

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

    #310707
    Suzanne
    Participant

    No more improvement with two more weeks on Cipro and Clindamycin, so those were stopped and she went back on Plaquenil daily and Zithromax MWF.

    She feels so good on those meds:  wakes up happy, goes to school where her teachers say they cannot tell she is any different than any other child, is active after school, has busy weekends.  But her finger stayed swollen and lost the range she gained.  Her wrist also lost range.

    We decided to try prednisone for the first time ever, to see if it would get the swelling in her finger down.  All these years I have read people post of the miracle of the evil prednisone.  How it works so well, so fast, but has side effects so you can't stay on it.  The love/hate relationships.  We had no intention of her staying on it; we wanted something to get the swelling down and hopefully it would stay down once she tapered.  We wanted to see something that is supposed to help arthritis help her arthritis.

    Prednisone did nothing for her.  Her finger is actually larger and has less range.

    We saw her AP dr. and he made a change that has me nervous.  Because she improved on the Cipro and Clindamycin from the children's hospital, he wants to stop the Zithromax and try 225 mgs of Clindamycin 2 x day.

    It is very hard for me the leave the comfort zone of Zithromax.  She stayed stable on that for so long.  It was 3 x week, not daily.  It agreed with her, no side effects.  She needed probiotics, but not PROBIOTICS.  Clindy is harsh.  I can compare Zith to Mino, it made sense to me.  This seems more unknown; I'm afraid her other doctors will not be as supportive as they have been.

    I'm going to be very anxious about this and not very patient about waiting for results!

    We still have to finish tapering the worthless prednisone.  Otherwise, she is on daily Clindamycin, Plaquenil, and 120 billion live organisms worth of probiotics.

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

    #310708
    Suzanne
    Participant

    I forgot to say that the radiology reports from the day they did the joint aspiration say 'septic arthritis' in her finger joint.  No one ever said those words to me, though.

    Less than a week back on Clindamycin, and the swelling in her finger is down by 1/2 cm.  She can bend it again, although it is painful.

    We did not see results this fast the first time she was on Clindamycin (and that was a higher dose, too). 

    Is the difference the combo with prednisone?  This is so confusing!!!!!

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

    #310709
    Suzanne
    Participant

    I discovered that my daughter is now documenting her progress on her own.

    I found a Post-it note that she had traced her finger on!  Not her hand, like kids do.  Just the finger that is giving us so much trouble.  She wrote, “Do not touch!” on it, so I guess I'm supposed to save it.

    I need to tell her to put the date or it is worthless LOL.

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

    #310710
    Suzanne
    Participant

    It’s been awhile since I’ve updated. The Clindy experiment ended with little fanfare after six months and she went back on Zith with the Plaq. Continued with dance, swim team, near perfect school attendance.

    She was getting closer to age 8, and I started lobbying for minocycline but no dr., AP or not, thought that was old enough. In the fall of 2010, I took this study to the ped rheum (http://www.rheumatology.org/about/newsroom/2010/2010_01_28.asp – “DMARDs, Glucocorticoids, and Biologics Equally Effective for Rheumatoid Arthritis “) and literally felt like I was making a deal with the devil. I said if combo DMARDs could be as effective as the biologic he kept recommending, we would be willing to try it. She would stay on Plaq, stop Zith to go on mino, and we would try a low dose of mtx again. He said okay, then other doctors told him she was too young for mino.

    So we weren’t getting mino but I had put mtx on the table. I was hopeful that the combo would work for my daughter as it had in the study. She had new swelling in a toe and that scared me (the ped rheum didn’t even think it was bad, but it was new). Even the AP dr. said that a low dose was excellent for inflammation, as long as it didn’t immune-suppress.

    We found out there was a huge difference in what we considered a low dose of mtx and what the ped rheum considered a low dose. I held my ground. She started at 5 mg, with him thinking it should be 15 mg. They wanted her to go as high as 25 mg eventually. She was tolerating 5 mg and we increased to 7.5 mg. We were told to go to 10 mg, but she never got there.

    She started limping, then wasn’t even able to dance. In all these years, she hasn’t been able to complete a dance class twice – and both times she was on mtx. I called the ped rheum’s office and was told she had arthritis and arthritis hurts. I was told it was just the progression of the disease and this was going to happen.

    “So you are telling me that after five years – five years – she goes on mtx and the disease suddenly progresses? Are you saying this is a coincidence?” ‘Blah blah medical talk blah blah talk over mom’s head so she can’t form a question from your answer blah blah blah

    “So it is a coincidence? Is that what you are saying?” Silence. Of course no one could say that. So they got her in and she was treated for osteomyelitis again.

    We are done with immune-suppression. I’m pretty sure everyone agrees with that now.

    That wrapped up in the spring. She had a great summer, swimming on the swim team again. School is going great and she is almost too busy – running club, Brownies, dance, basketball. She isn’t in remission, but it doesn’t slow her down. CRP is her only abnormal lab. It went to normal on mtx, and the tiniest part of me wonders what staying on only 5 mg might have done for her.

    She is still on daily Plaq, and Zith (250 mg M and F), plus a daily probiotic.

    I came back to this thread to see if my recollection was accurate and it is – the finger started in the fall, and also the toe that scared me into the mtx. Here we are in fall again, and she has either an ingrown toenail or cellulitis again. Given her history, I’m afraid it is cellulitis. Remind me to refuse the flu shot next year. That is something I can control about this time of year, isn’t it?

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

    #310711
    Suzanne
    Participant

    The toe responded to the abx cream I’ve had to keep on hand for various bouts of folliculitis and tiny cuts and scrapes that got bigger instead of healing like they should. More mystery. Ped, ped rheum, ortho, derm had no answers. Just keep using the abx cream. They were my biggest worry, not her arthritis.

    In March 2012, we were headed back to the derm to try to find an answer when she ended up with another rash that took all his attention away from the reason for the visit. New diagnosis – PMLE (polymorphous light eruption), a sun allergy. Only advice was to stay out of the sun, not 100% realistic for an active child, so I came home to google for more help. I was shocked to see that Plaquenil is supposed to TREAT the condition. http://www.mayoclinic.com/health/drug-information/DR600761

    Oh my…..could it be like how Enbrel treats psoriasis, but can also cause it????

    We’ve never seen evidence that Plaquenil has helped her arthritis, but we have kept her on it because it didn’t seem to hurt. It treats Lyme, so that is a plus, and it is a DMARD so the kept all the dr’s happy. But what if it was causing this reaction? It looks horrible and itches really, really bad. I checked my notes and the first time it happened was about six weeks after starting Plaquenil!!! (I always thought she was allergic to something in the sunscreen, or a pool chemical, or soap…it would come and go with no rhyme or reason that we could tell).

    She was on it three years.

    My wheels were spinning. The rash is skin…what if these sores they can’t explain are related? More googling. It can cause a lot of cutaneous adverse drug reactions: http://www.jrheum.com/subscribers/07/02/253.html . Including PMLE.

    I called to say we were going to hold the Plaquenil until the next ped rheum appt. She has been off it more than a month now, although I know it stays in your system for a very long time. She is doing great! So great, it makes me very sad to realize it probably did give her somewhat of a yucky feeling all these years :(.

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

    #310712
    Suzanne
    Participant

    Last night, I came upon some information that I have to share!

    It is getting close to the time for my daughter’s annual well visit. We can now schedule these online, and the site also has a record of all your past visits.

    She has not been seen at the ped’s office or Urgent Care in the past year! No sick visits at all! For a year!

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

    #310713
    Suzanne
    Participant

    So close, but we didn’t make it……

    Earlier in this thread, I posted about skipping the flu shot. I saw a pattern of having something weird crop up every fall and mentioned not getting one and seeing what happened. She didn’t have one this year, and it is not as if I ever even refused one. Since she never got sick, we were never in an office to be offered one! I didn’t actively seek one out, but really I don’t think I ever have, we are just captive in an office and they convince me to get her one.

    Nothing weird this fall, but she got the flu this spring. It wasn’t a bad case at all, nothing to make me regret not getting her the shot (but the Urgent Care dr. sure tried to make me feel bad – “Sure you can go to the beach, they have two good hospitals there.”). She was practically well by the time she was diagnosed – two days of fever, but a cough that lingered and she just wasn’t acting right after nearly a week so I took her in. And the girl she got it from had the flu shot :).

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

    #310714
    Suzanne
    Participant

    We have added a new activity: Dive Team.

    When swim team started back up, the dive team offered a free trial and my daughter begged to try it. She loves it! I’m hoping she never gets beyond a pencil dive (those flips scare me!) but after two days they had her working on a back dive.

    So after a full day of school, she heads straight to 45 mins. of dive practice, then the swim team runs for 15 minutes before swimming another 45. Is she ready to go home? No, she wants to work on dives for as long as I’ll let her afterwards!

    I wrote “JRA” on the sign up form, so the coaches would know. The parent rep e-mailed me right away, concerned because she has RA and was afraid diving would hurt. I told her my daughter was good at self-management and nothing had bothered her so far. In fact, she is swimming over to the side and pulling herself up out of the water – even though there is a ladder right there she could use!

    We also saw the ped opth earlier this week and as usual, her eyes are fine. He has spread out her visits as far as he is comfortable without hearing from the ped rheum, but thinks she has been doing well for long enough that he can see her even less. I will have to mention that at the next ped rheum appt.

    We are very optimistic that this will be the best summer ever :).

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

    #310715
    Suzanne
    Participant

    I’m going to write about cartwheels today.

    My daughter was diagnosed just as she turned two, and her wrist was already severely damaged at that time. We would always say, “She’ll never be able to do cartwheels, but that’s okay.”

    About second grade, the girls started doing cartwheels. “It’s okay. Not everybody can do one.” By fourth grade, “EVERYBODY CAN DO A CARTWHEEL BUT ME!” She wanted to try, wanted me to teach her, but it was too scary for me – plus she was just so tall, it was a long way down to ground to land on your hands. “It’s okay, by middle school NOBODY is doing cartwheels at recess anymore, I promise. You can dive, you can tap, you can do a lot of things they can’t do. It all works out.”

    She was also begging to take more than one dance class this year. After an appt. with a new ped rheum, who asked, “So you can, like, do stuff? You go to school?”, I was afraid to even sign her up for one. How are we so blind, so crazy? The doctors think she shouldn’t be functioning at all. As usual, it was the dr. who was crazy :). I let her try out the classes, and signed her up for three!

    Ballet, tap, jazz. No acro or hip hop, because they do handstands, handsprings, and cartwheels.

    She came out of the second jazz class and said, “They did cartwheels today.” What? In jazz? “Yes and I told the teacher I can’t do them, so she said she would figure out something else for me.” (I love this dance studio.)

    I hoped it was fluke, but they did them again in the third class. Did the teacher figure out something? Not yet. Do you remember when the acro teacher subbed, and she stacked mats on the floor to cartwheel over, so your hands didn’t have to go all the way to the ground? Yes. Ask the teacher if you can try that, if you want to.

    She said that worked great in the next class (still unsure why they are cartwheeling in jazz class). She said she was improving and would be able to do a real one with more practice. I wasn’t sure about that, but I was glad they found a solution.

    Last week, as we walked across a field to a school picnic, she cartwheeled right in front of me. It wasn’t perfect as far as her legs getting all the way up straight, but it was cartwheel where it was clear her hands, wrists, arms bore her weight and she finished with a big smile. I smiled inside, but still gave my “don’t do that here, you will hurt yourself” speech.

    After class this week, she said the stack of mats is lower and she is almost there! Cartwheels. Never say never.

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

Viewing 15 posts - 1 through 15 (of 15 total)

The forum ‘Personal History and Progress Threads’ is closed to new topics and replies.