UPDATE on Toddler with JRA

[evalon]

Happy Spring to Everyone!!!  We finally have some 'good' news to report on our 2 year old girl…after almost one year of swollen knees (she can't walk), headaches, stiff neck, sensitivity to light…11 docs…thousands of dollars in out of network costs, procedures, physical therapy, etc, etc, etc…..and the deep conviction that our 18 month old child didn't just  wake up one day to an immune system run amok….we FINALLY, FINALLY, FINALLY got the scrip for abx!!!! it feels like we're truly on the right road (back) now!  Her Igenex results in October were indeterminate on band 39..(she has been positve on 41 and then 66 since last July…)…We requestd to redo the tests….and not only did 39 come back indeterminate again..but now…31 is indeterminate too!!!  The doc read ind as negative..we pursued…he agreed to put her on zithromax…….It's like a huge weight has been lifted…..though I know..we have a long uphill climb ahead…If anyone can tell us what to look for/expect if and when she starts to herx if would be most appreciated. We couldn't have stayed the course without the people on this site.  THANK YOU to all of you..(especially Maz Ct, who is a treasure chest of kindness, knowledge and support)…..Happy Spring, ev. 

[Lynne G.SD]

Hi EV;
      Thank God you have found the problem.Fixing it is  a stinker for me as I likely had it for a couple decades.I have been on total remission from SD for quite a few years but could never go off Mino for more than a week without it rying to make a comeback.That is when my doctor said that ther must be a reason.
   My herx is just like having SD all over again but the pain is 4-5 times worse.However I do not have the skin hardening or reflux.The worst is eye pain,light sensitivity and blurred vision.Chest pain similar to heart attack,and extremely sore ligaments.When it gets to be too much I stop the antibiotics for a few days and all goes back to normal.Sometimes I just have to take a breather now and then.
                         Lynne

[Parisa]

Ev,

I'm so glad to hear that you finally got a scrip.  We can only hope that maybe she won't herx but just improves.  We have a couple of people with young children but not a large pool here.  If you want more help with herx related info as regards babies, you might try Lymenet.  Have you looked into an appointment with Dr. J in Connecticutt?  He truly has the most experience with little ones.

[justsaynoemore]

Congratulations!  Keep us informed, please.  Take care ~~ Cathy

[Kim]

Hi Ev,

I'm glad you are on the right track with your daughter's diagnosis, finally.  A good LLMD will know just what she needs. 😉  Her herxing might be more lethargy.  Some of the meds leave a metallic taste in your mouth so she might not have much of an appetite, but that should pass.

Take care……kim

[Suzanne]

Tips from our experience on oral susp. zith:  If you use generic, make sure it is the Greenstone brand; they are owned by Pfizer and I was assured by multiple people who should know that it is the same as the brand. 

Also, it wasn't the worst tasting med my daughter ever had, but it wasn't great and the aftertaste was worse.  I squirted it fast and immediately gave her a Goldfish.  Any cracker-type thing worked best to get rid of the taste right away.

I had to mix mine, since they dispense a one month supply but it only lasts ten days once mixed.  Do not mix with tap water, use distilled or bottled (the pharm should tell you that, but they didn't tell me until the second refill!)  And it will clump and drive you crazy, but eventually the pharm told me the trick to that.  Add the water, and AS FAST AS YOU CAN, close it and turn it upside down.  If you close it and shake it first, it will cake to the bottom.   So close, turn it upside down, then shake it.

Good luck!  We are headed off on Spring Break today, but I'll be around next week if I can be of any more help.  

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

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