OT name of infusion med "begins with Z" | Arthritis Information

 

 I don't know why my stepson's mother can't be bothered to know the names of the medications he's put on, and it's driving me crazy.  Apparently he's now started an infusion med that "begins with a Z", "somthing like zithropac" for his Stevens-Johnson Syndrome problems.  It's likely to be an immunosupressant of some kind (although the name sounds more like an antibiotic), but then again I'm not sure she knows what it's for.  She gets confused by all the med stuff and just follows the doctor's advice blindly, which scares me.

Now that I've cooled down for a sec, just wanted to add that his mother has health problems of her own, plus she's dealing with all these awful things happening to her son (his bad eye has gotten worse, from 20/60 to 20/100), and I'm sure she's doing the best that she can.  I've never been in her shoes, and we all handle things differently.  My way of handling things is to find out all I can about the disease and the meds and make sure to ask the doctor every question imaginable, and I'm just frustrated that I can't quite do that here.  It's also possible that she just mispronounced the med, or my husband got it wrong in translation, or something else.  No matter how it happened, I'd just like to be able to find out some more about it on my own.I know there are SJS sites out there - have looked over any of them?  They probably list treatment options.

I'm so sorry about your stepson.  Someone I work with occasionally has a daughter who had SJS from a seizure med, and it sounded awful.  I think she spent a month in the hospital.  Their ped said the rash wasn't coming from the med, and to keep giving it to her.  Wrong!

I hope you will find some answers.  Take care.     Zithromax is given IV a lot to treat resistant infections. Suzanne, you know I didn't even think to look at SJS sites (damn brain fog!).  I'll try that.  My stepson's SJS actually started when he was 4 (long before I was in the picture) and he was hospitalized for over a month.  They never identified a cause.  Then everything was fine again til he hit puberty and it started acting up again in his eyes, and also I believe in his joints and back (the joint and back problems stopped when he started Imuran).  A specialist in Boston has been doing all sorts of experimental stuff on him (including stem cell procedures and having him be the first human on earth to try some sort of eyedrops that shrink the blood vessels).  So this new medication could be almost anything, not necessarily a "standard treatment" for SJS (if there even is such a thing).  But they have been giving him immunosuppressant meds (in addition to the Imuran) so I was thinking

it might be one of those.

 

He's only 15 years old and handling well considering.  I was thrilled to find out today that he is now in therapy (at his request) after my husband and I have been trying to get him to go for over a year.

 

Anyway, thanks for your response...I'll try looking at some of those sites.

lorster, you know I thought it sounded vaguely like an antibiotic, but would they give that to him on an on-going basis (his loading doses are every 2 weeks), through IV, all while giving him immunosuppressants?  I just wish I could talk directly to the doctor, but it's not possible.Oh, it sounds terrible, and now I am scared for my friend!  Her daughter was about 4 when she had it, too.  She is the same age as my older daughter (12), but maybe she will be okay because I know she started puberty early, like two summers ago.

I had no idea it could come back after  the first time, unless you were exposed to the same type of drug again or something.  I hope you find some good info on the those sites, maybe others who have had it reoccur.
[QUOTE=InnerGlow]lorster, you know I thought it sounded vaguely like an antibiotic, but would they give that to him on an on-going basis (his loading doses are every 2 weeks), through IV, all while giving him immunosuppressants?  I just wish I could talk directly to the doctor, but it's not possible.[/QUOTE]

Zithromax is not contraindicated with any immune-suppressing meds, as far as I know.   My daughter did mtx with it, and can do the biologics, too.  Plaq is fine,too.

Now you have me wanting to talk to the dr. LOL!
I'm not sure the medical community is all that aware that it can recur.  I've seen sites that mention lingering (lifetime) symptoms like back pain, but not really anything saying it can come back with a vengeance like this.  My stepson's regular docs didn't want to mess with this and so they've been travelling to Boston for this specialist.  He really can't tell us anything about the prognosis.  We're still hoping that when puberty ends, so will the flare up. Maybe recurrence is rare, or maybe they just don't have enough patients to figure out the trends yet.yes, zithromax can be given with immunosupressants.   I see people given these drugs for months at a time. Make sure he gets probiotics on a frequent basis. I see more of these being ordered in the hospital which is nice. Probiotics was my first thought too, but his mother is overwhelmed and doesn't want to give him anything the doctor hasn't explicitly ordered (the doctor is king of the ego-maniacs and doesn't like questions, but apparently he's the foremost specialist in his field).  I'll give it a try though.innerglow. send her some info on probiotics. these doctors can also be antibiotic maniacs and she needs to be her childs advocate. it is important that she not allow his gut to get chewed up if there is no normal flora to protect itself. hopefully this doctor is conservative and will know when it is time to quit.   At least encourage high quality yogurt. lorster2008-05-15 15:22:17Yogurt will be a huge help.  If the mom will be overwhelmed by talking 'probiotics', just say 'make sure he eats yogurt so the antibiotics don't upset his stomach'.  Even if she doesn't take that advice right away, the first time he has troubles, it might come to her mind and she will pick some up.

Man, if only they had said something that simple when my older one was going through ear infections!!!  Getting ear tubes helped her stomach as much as her ears!  The peds said nothing, but her daycare director told me to buy acidolpholous capsules and squeeze them in her food.   Unreal. What would be great is if I could find a simple (and positive) fact sheet about probiotics that I could give to her.  Everything I've found so far on the net is overly complicated, and hedges their bets as to efficacy and necessity.  I'd love to bring her a simple fact sheet and a bottle of good probiotics when I go to her home a week from Sunday.

 

Anyone got any good pages?

This will explain what yogurt can do:

http://www.stltoday.com/stltoday/lifestyle/stories.nsf/healthfitness/story/A508F5801DB5E273862574130069141A?OpenDocument

The last line says to avoid probiotics if you are 'hospital ill' (?); maybe a reason to stay away from supplements and do yogurt for him for now???  I think that is what I would do, unless the dr. said supplement.  My opinion.
Innerglow. I know there are some kids flavored probiotics out there that are drinkable. As far as easy to understand info, I wonder if the pharmacy would have some info you could obtain. Thanks ladies for the good ideas.  I'll do my best.
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