Importance of Strep Test...

[Marielle]

Well Hello Everyone...
Been awhile since I have actually wrote anything about Jessie. Things have been going really good since her ending 5 months of UVB in May 2003. Jessie has been pretty much in "remission" since then. Just a few spots on her eyelids, ears, creases of her arms and legs and a few on her scalp. We have the daily routine that most of you have, Michael does meds in the morning and I do meds at night. Well Sunday night we saw that Jessies scalp was really bad, she itched it so bad that it was bleeding and drianing something awful. Made her soak in a bath and then used some dermasmoothe (the Luxiq foam was stinging). I guess when this was so bad a red flag should have gone up, but she has been so well for so long...We kept her home from school to medicate and watch her from scratching. So things went back to normal, Michael meds in morning, me meds at night....On Wednesday night, Jessie came up from her toy room and was telling me that she itched really bad. Started looking at her and her legs were covered and she was getting spots everywhere on her chest, underarms, and belly. Put her in an oatmeal bath right away, asked Michael how she was that morning and he said she was fine and did not have any of those spots. Long story short....Made an appointment for a strep test on Thursday and sure enough, Jessie has a really bad strep infection with NO SYMPTOMS!! The doctor thinks once again that she has had it for quite awhile. So I am here to tell you that get those strep tests. The quick one also came out negative so demand "the culture". Jessie is doing good now since we did catch it in time. Meds are working great at getting rid of the spots that did show up. I just thought I would stress the importance of the strep test and its effect on Jessie's P. Talk to everyone soon.
M

[rosy3939]

Very important information, Marielle. Weather you young or old if a quick outbreak of P occurs get a steph test right away. It could be the cause of that out break.

Second very important point that Marielle made is make the doctor take a culture test not just just the swipe. There are too many false nevatives.

Hope that drive home the point. It is important and may save days or weeks of suffering.

Mitch

[beladonna]

Marielle,
Strep is my trigger big time too. It has gotten to the point, that when I break out all over, as Jessie did, I know I have a strep or some type of infection w/o any real symptoms. It is now my body's way of telling me I have an infection. Good thing is, once the infection is removed, most of the spots start to fade. Im sure Jessie's will clear up too. BTW, Im on the NB UVB as well, with great results..Like Jessie. I hope she continues to do well.

Donna

[AmeliasMom]

It's been awhile since i've been on the boards... Amelia has been pretty clear for awhile, but now she seems to be showing more spots and her scalp is breaking out. I'm waiting for the results of her strep culture as i'm sure it's the culprit - like last time, no symptoms, but breakout.

Just wondering, Marielle, was Jessie on Amoxicillin, and for how long? Amelia had to do two rounds of 4 days each to nip the last strep in the bud. I read somewhere on the boards that one child was put on a 30-day program. seems extreme, but maybe what it takes?

Also, is Dermasmoothe as bad as it sounds? Some people posted that it makes their hair smell bad and get oily. Amelia has such gorgeous hair i'd hate to do this to her...

Looking for feedback.

(and i'm glad to hear Jessie is doing so well!)

Julia

[MikeK]

Originally posted by Austinfish
Also, is Dermasmoothe as bad as it sounds? Some people posted that it makes their hair smell bad and get oily. Amelia has such gorgeous hair i'd hate to do this to her

Hi Julia,

Welcome back! Derma-Smooth/FS can be VERY hard to get used to. (Some adults have posted here that they stopped using it, because they didn't think that they'd ever get used to it.) It's peanut oil based so it is just like putting oil in your hair. It may take several shampoos to rinse it out. (It also stain and the stains are impossible to get out so old towels and bed linens are a must.) That's the bad news. The good news is that it does work.

You might want to try Luxiq Foam (www.luxiq.com) instead. It's burns for about 30 very long seconds when you first apply it. (That means that it's working, IMHO.) But it's much easier to use then the Derma-Smooth/FS. You apply Luxiq like a mousse. The instructions say to put in in a plate (a paper plate works fine) and massage it into the scalp, but you can probably get away with applying it directly to Amelia's scalp. It's a foam and it melts on contact so you have to work quickly.

Hope this helps. Keep us posted.

Mike

[Marielle]

Hello Julia
Welcome back. Sorry to hear about Amelia's breakout. Jessie was on an antibotic that starts with a Z, I can't remember the name but the logo has a zebra on it. She was on it for 12 days. What the ped told me was that it stays in her system for 24 days. So it was a 24 day dose even though she took the pills for 12. The derma-smoothe is messy but works. Jessie has chosen it over the Luxiq foam because the foam stings. We do the derma-smoothe every other night and she takes a shower with Tea Tree in the morning. It is working great and is not so bad on the hair. I hope all this has helped.
Talk to you soon
M

[AmeliasMom]

Just getting back to everyone now as i was waiting for strep test results. THanks for the replies.

As i suspected, Amelia's strep level is high again. After telling the various nurses i talked with on the phone that she was feeling fine and "just" dealing with a breakout, they finally put me through to her pedi who laid out a plan with me to do a culture (even though we knew it would be normal) and then the blood test so he could track her ASO. We tested her and and her ASO was at 575 (for anyone new, normal range is 0-100). Better than the last time when she was at 850! SHe's now on Eurithromisen (sp?) for 10 days. We'll test her blood again in 2 months to see where her ASO is after the strep has left her system. The hope is that we'll get a sense of what her normal level is (which may be higher than average). THen, we'll know when to treat her and when not to treat her with drugs. Sadly, we'll probably just know when we see her skin worsen.

Anyway, the good news is that the lower level meant her breakout didn't worsen before we got her on drugs. I'm hoping to see an improvement soon. I'm holding off on any other drugs/scalp treatments until then. I want to see how much the Eurithromisen works w/out betamethazone or Protopic. Sad to experiment like this, but Amelia is pretty ambivilent about it other than being annoyed to have to take the "pink goo" two times a day!

I'll touch base in a week or so after the meds kick in.
take care everyone!

Julia

PS: Marielle, lovely shots of the girls! The latest of my babies can be seen at: http://www.austinfish.org/easter2004.jpg

[Marielle]

Hello Julia
I am so glad you took that extra step. Jessie is the same way. I think that once your P comes out they find out that you are a strep carrier. We did the same as you. We now go to the ped lab and get the culture everytime Jessie breaks out. The derm is thinking about taking out her tonsils to see if that will help. But we will see. I love the photo. Your girls are so beautiful. Well Motherhood calls.
Talk to you soon.
M

[AmeliasMom]

I'm finally getting a chance to write because I am SO frustrated!
In late May, Amelia did 10 days of antibiotics as well as a new stronger topical steriod for her tough spots and we're still not seeing progress. Her spots are worse than i have ever seen them. Not just all over her arms and legs, but belly and back too. Her scalp was bad as well, but we just started using Carmol and it seems to be working (we're just starting week 2 of a two week treatment).

I feel like something else is making her immune system unhappy and that the antibiotics didn't do the trick like they did last time. My husband and i are not as dilligent either about doing the topicals 2 times a day (with two other little ones, and work it's hard!).

I'm thinking about looking for a new derm for Amelia. I like mine, but my P is well under control and UVB works for me so he doesn't really need to do much for me. Amelia sees one of his colleagues (mine is not taking new patients) and with all that she has offered, we're not seeing any improvement, not even now that Amelia is in the sun every day. I'm afraid she'll suggest UVB and I'm hesitant to start UVB for her at such a young age of five. Plus, I'm now seeing the effects of years (20+) of UVB on my skin and i hate to start the damage so early on her...

ANY words of advice would be appreciated here. She is really getting down on herself about her spots and while it's nice to be able to empathize with her, I really want to do more for her....

Thanks.

Julia

[MikeK]

Hi Julia,

Welcome back! I'm sorry about the reason. Sorry to hear that Amelia is still going through such a rough time. Altough a second opinion is always good idea (maybe from a pediatric derm? -- here's a link to the Society for Pediatric Dermatology's website: http://www.pedsderm.net/) is always a good idea, but I can't help but wonder if Amelia still has a strep infection. It's possible that she may be asymptomatic and it sometimes take more then one course of antibiotics to clear a strep infection. You might want to take her in for another culture.

If you haven't already done so, please switch to "free and clear" detergent and dryer sheets, etc. I find that the dies and fragrances in laundry products irritate my psoriasis. The same thing applies to anti-bacterial and deoderant soaps.

Having Amelia take baths with a product like Aveeno Oatmeal Soak may also help. http://www.cvs.com/CVSApp/cvs/gatewa.../search?page=2

Hang in there. I hope that this helps. Keep us posted and please don't be a stranger.

Mike

[AmeliasMom]

Mike,

Thanks for the feedback. I am with you, and have had a sneaking suspicion that the strep is still there. The randomness of the spots all over her is so typical of a strep breakout. My ped had suggested we test her again in 30-60 days after her ten day antibiotics treatment, so I think i'll go for it this week. She hates going to do these though as the strep only shows up in her blood and not via a culture. Another needle. Sigh...

Thanks for the links. There were no pedi derms listed in MA (??). As for detergents, i'll give it a shot. She also soaks in sea salts which seem to help the flake-factor... Didn't know about antibacterial soaps either. Kinda ironic if you think about it!

I'll keep you posted.

--J

[Marielle]

Hey Julia
I totally agree with Mike. She still has strep. The first time Jessie had it, they had her on antibotic for over a month. Within two weeks she had it again. I do agree with you on the UVB. Our derm told us that Jessie would not need to do the UVB in the summer because of the sun. So keep her in the sun and get the strep test done. If you need anything just hollar.
Sorry so short and to the point but I am on my last day at work, getting ready for a weeks vacation to the north country. Talk to you soon.
M

[MikeK]

Hi Julia,

You're very welcome. Glad that I was able to help.

You mentioned:

Originally posted by Austinfish
Thanks for the links. There were no pedi derms listed in MA (??).

The website must have been down when you tried it. (Don't you just hate when that happens?) I just tried it and found several listed for MA. Here's a copy of the list:

State or Province=MA
18 Matches Found (displaying 1 to 18)

Rafael Pupo, MD
321 Nagog Hill Road
Acton, MA
01720-3227


Stephen Gellis, MD
Children's Hospital Medical Center
300 Longwood Avenue
Boston, MA
02115


Kay Shou-Mei Kane, MD
Dept. of Derm, Fegan 6, Children's Hospital Medical Center
300 Longwood Ave.
Boston, MA
02115


Marilyn Liang, MD
Children's Hospital Derm Program
300 Longwood Ave.
Boston, MA
02115


Leslie C. Lucchina, MD
1 Emerson Place, #12M
Boston, MA
02114


Jill R. Rosenthal, MD
New England Medical Center #114
750 Washington St.
Boston, MA
02111


Jules Rako, MD
830 Oak St., Ste #8
Brockton, MA
02301


Andrew P. Truhan, MD
42 Eighth St. #5316
Charlestown, MA
02129-4228


Samuel Goos, MD
242 Baker Avenue
Concord, MA
01742


Marie Eleanore Nicolas, MD
2f Sagittarius 11 Bldg., H.V. dela Costa St.
Salcedo Village
MakatiCity, Metro Manila
PHILIPPINES


Louis Kuchnir, MD
159 Union St
Malborough, MA
01752


Lionel Bercovitch, MD
966 Park St.
Stoughton, MA
02072


Deborah F. Spitz, MD
16 Silver Birch Rd.
Waban, MA
02468


Karen F. Rothman, MD
154 E. Main St.
Westboro, MA
01581


Suzanne Grevelink, MD
955 Main Street, Ste 108
Winchester, MA
01890


Davis Farvolden, MD
281 Lincoln St., Division of Dermatology
Worcester, MA
01605


Susan Sweeney, MD
UMASS Medical Center, Dept of Derm - Hahnemann Campus
281 Lincoln St.
Worcester, MA
01605


Karen Wiss, MD
Dermatology Division/UMMHC, Hahnemann Campus
281 Lincoln St.
Worcester, MA
01605

Hope this helps.

Mike

[AmeliasMom]

Thanks Mike!

I just got AMelia tested again for strep yesterday (blood test). In a couple days i should know the results. Meanwhile, based on some of the stuff i've read on these boards, i'm trying out tea tree oil on some of Amelia's spots. I found it at the local Trader Joe's and figured it couldn't hurt....

Stay tuned!

--J

[hannahbaby]

Hi guys,
i'm new to this and i'm wondering what ASO levels are? Can any one explain?
Also should I get a blood test for my daughter every time she shows spots or is it something I should do regularly as a matter of course?

[MikeK]

Hi Hannahbaby,

You asked:

Originally posted by hannahbaby
i'm new to this and i'm wondering what ASO levels are? Can any one explain?

Here's one definition:

Streptococcal infections are caused by a microorganism called Streptococcus. Three streptococcal antibody tests are available: the antistreptolysin O titer (ASO), the antideoxyribonuclease-B titer (anti-Dnase-B, or ADB), and the streptozyme test.

Purpose

The antistreptolysin O titer, or ASO, is ordered primarily to determine whether a previous group A Streptococcus infection has caused a poststreptococcal disease, such as scarlet fever, rheumatic fever, or a kidney disease called glomerulonephritis.

Source: http://www.healthatoz.com/healthatoz...ody_tests.html

You also asked:

Originally posted by hannahbaby
Also should I get a blood test for my daughter every time she shows spots or is it something I should do regularly as a matter of course?

Most people can get by just by having their doctor take a culture of their throat. A blood test might be necessary if your daughter has a psoriasis outbreak that doesn't respond to treatment and a strep culture comes back negative.

Hope this helps. Let me know if you have any other questions.

Mike

[AmeliasMom]

Mike, you have such good information!

FYI, Amelia's last ASO was in the high 500's (normal is 0-100). She tests negative with throat cultures.

She's on her second week of antibiotics and (thanks to Marielle's advice!) her pedi and agreed to keep her on this for 4 weeks. So far, her skin is under control (no new spots), but not clearing yet...

The plan once we get it to calm down is to do a blood test again in a month to see what her "normal" ASO is. It could be that she just is normally high. In which case, an exposure to strep makes the number sky rocket (she was in the 800's in the spring!) and a subsequent breakout. At least we know what is triggering the breakout. Now it's just a matter of getting it under control.

Stay tuned..

Julia

[MikeK]

Hi Hannahbaby,

You asked:

i'm new to this and i'm wondering what ASO levels are? Can any one explain?

Here's one definition:

Streptococcal infections are caused by a microorganism called Streptococcus. Three streptococcal antibody tests are available: the antistreptolysin O titer (ASO), the antideoxyribonuclease-B titer (anti-Dnase-B, or ADB), and the streptozyme test.

Purpose

The antistreptolysin O titer, or ASO, is ordered primarily to determine whether a previous group A Streptococcus infection has caused a poststreptococcal disease, such as scarlet fever, rheumatic fever, or a kidney disease called glomerulonephritis.

Source: http://www.healthatoz.com/healthatoz...ody_tests.html

You also asked:Most people can get by just by having their doctor take a culture of their throat. A blood test might be necessary if your daughter has a psoriasis outbreak that doesn't respond to treatment and a strep culture comes back negative.

Hope this helps. Let me know if you have any other questions.

Mike

It was recently brought to my attention that the links in my previous post no longer work. (Sorry about that! I hate when that happens.) Here's a link to another site that discusses strep (it also includes a discussion of ASO levels): http://www.labtestsonline.org/unders...strep/faq.html.

I hope this helps.

Mike

[Amanda\\\\\\\'s Mom]

Hi,
I am new to the board. My 11 year old daughter came down with gp soon after her Chicken Pox vaccine two years ago. Initially, it was just on her scalp. About a year ago, after having strep, she got the gp spots all over her body as well as on her face and behind her ears. No topical treatments have worked. She recently had another strep infection, and although the rapid and cultures came out negative, I still suspect she has strep. I can smell it on her breath and the gp has not cleared at all.

After reading your threads, I will demand the blood test! The dr.'s already think I'm nuts because of my insistance of the smell on her breath Also, we are having her tonsils removed in a few weeks, and I certainly hope this helps clear the gp!

She is so depressed about how she looks, and refuses a strict topical regime because of the time and discomfort. Since it's not working anyway, until the tonsils are out, I will give up the fight.

Any thoughts?

[kim123]

Hi Amanda'sMom,

Wondering if you were successful in getting bloodwork and how your daughter is doing?

I have a few studies that might help you convince Dr. if you're having a hard time.

[twinieten]

If you have links that you could share, I'm sure many of us would like to see these studies!