New (for us ) presentation of strep infection

[PJ Leary]

Hey all,

You all know I usually post on the other board, but sometimes peek in here as well.

Today I am posting as a psormommy. This is what happenned:

My 9 year old daughter went away on a scouting activity for a weekend. Early in the morning on Sunday, she was suddenly up and vomiting. Obvioulsy, I kept her home from school, and weaned her carefully back onto solids. Although she ran a slight fever, that was the end of it.

Late in the afternoon, she complained of a rash on her chest.When I first looked at it, it looked just like prickly heat. I put some Lubriderm on it. I thought it likely the rash was a part of the vomiting bug.

It spread down her torso, onto her back, and behind her knees in the next 24 hours, and became rough like sandpaper.

The next day, we were in to see the family Dr, and he did a quick strep, and grew out a culture just to be certain. The quick was negative, and he really did not think it was a strep rash since it was not a paint spatter presentation. The culture grew out positive.

Within 48 hours of antibiotic treatment, the rash began to subside. It is now completely gone. She never had a sore throat, or any fever other than the low grade fever on Monday.

One week later my 16 year old daughter complained of a rash in exactly the same location on her body. It presented the same way, so I took her to the Dr. He did a quick strep and grew out a culture. He just medicated her anyway, and for good measure, extended the treatment for the other children and myself. For the older child, I asked for some Diprolene and some Elocon, and added an antihystimine for good measure.

Both of those cultures came back negative. There is no doubt that both children presented with psoriasis within a week of each other. The good news is that they both seem to be healing well. The additional good news is that I have suddenly become completely clear for the first time in more than 5 years.

The hardest part was dealing with their fears. They have lived with me a long time, and have both seen how I have sufferred physically and psychologically with this disease. They were reasonably, and justifiably worried about becoming like Mom. We ended up having some pretty long heart to hearts, and I called on my father ( also a psor ) to help in the effort. We came through it pretty well, but a bit shaken by it.

Just thought I'd throw this presentation out to you all, an FYI. It certainly was a new one for me.

Take good care of yourselves and your precious ones.

PJ Leary

[GJT]

Hello there. I don't know if you remember of my last year posts. I was so frustrated. My daughter Celena (7 at the time) broke out with a 'rash' all over her body and long story short finally narrowed it down to psor from strep. When her strep would subside her psor would calm, and then she'd get strep again. she got strep 5 or so times and I knew each time before the strep test by looking at her poor face, ears, legs, etc. I have been a psor sufferer since 21 (42 now) and it killed me to see her skin. Guttate is the name for her breakout psor. I was disgusted with putting all the steroids on her and the dr's just kept giving me more and stronger. I did a ton of research and found strep and psor are related and was furious my the derms did not tell me that. Finally, I made the decision to get the tonsils removed (after 9 months of misery) and put her in a tan bed. After her tonsils were out she began clearing and did not have even a cold this past year. She has a few spots on elbows and knees, but believe me, that we can live with. Your story was so familiar. Take care,
Gail

[PJ Leary]

Hi Gail,

I remember you well, and your story. It is ridiculous that the current Drs are so not with the program on this subject. It is in all the books. My two beauties were also guttate, same as Mom, but with a different presentation than Mom. Fortunately, we have a family Dr who actually pays attention and looks and listens. Therefore, I was able to nip it in the bud quickly.

I am so pleased to hear that you had Celina's tonsils removed, and that it was helpful. I actually considered that for myself last year, but my Dr said it was not likely to help. Thanks to your insight, I believe I shall re open that dialogue.

Have you tried UVB for Celina instead of the topicals? It may be the least intrusive method of containment for her, with the least potential side effects. The UVB is likely to be more effective than the tanning beds, with a shorter exposure time for maximum benefits. Please feel free to email me if you would like to discuss it further.

In any case, you are a wonderful advocate for your precious one! But, I wonder, how are you?

Warm Regards,

PJ Leary

[Tephywashere]

Gail and PJ-

Boy it has been quite awhile since I hopped on one of these boards, but it is great to recognize those here.......I am so happy to hear that the tonsils removed has helped Celena....we have considered it for Emily but she has been 99.5% clear since about October so we put it off...
I can understand your daughter's fears... Emily's brothers especially the teenage one freak out everytime they get a pimple of anything on their skin....they know how hard it was for Emily....I think you both have done a great job with your kids just by setting the strong examples that you do... this will not alleviate their fears but I'm sure it gives them the confidence that they can handle what may come.......Keep up all the great work!

Stephanie
Emily's Mom

[debbiecbj]

Hi !! I have not been here in awhile because of running back in forth to derms who seem to do no good. My son Connor who is 8 has had psor for 2 1/2 years.ut latest derm finally tells us to that Connor has Guttate Psoriasis. We have done some light treatment for his scalp but not his skin, which is covered. Up until this past winter and 2 strep infections later he only had two small patches on his skin. I have a bag of tubes that seem to so no good. I am very fustrated !!!!!! I wonder if we should have his tonsils removed before this winter to be certain he has not a repeat of this past... Or if we should get our own light unit and stick it out. I worry about surgery, my other son has his tonsils out for other reasons, and had trouble with waking up aferwards. Help and SUGGESTIONS... We have a very conservitive derm now who does not like strong steroids and treats my son like a child instead of an adult.


Thanks,

Debbie

[PJ Leary]

Hey Debbie,

You should be happy that your derm treats your son as a child. That does NOT necessarily mean he has all of the right answers.

If I were you, I would do the tonsils. Gone. Then see how he does. I am facing similar issues with my own children in the near future.

There is more to my family's story, but I will make a new post about that.

If you consider any long term treatment, I would give serious consideration to the UVB, and a home unit may not be a bad idea. Have you tried tar?

Hope that helps. Email me anytime, if you want.

Regards,

PJ Leary

[KimBeck]

Wow.....My daughter isn't the only one. We were the first at our family practice. She had 5 Strep Infections in 6 months then came the Guttate. Due to HMO policy we are looking for 1 more infection to have her tonsils removed. Bad when you want a child to get sick. We have been through 2 MDs and an awful dermatologist. Our family doctor is sending us to UNC to a ped. derm. What can we expect? This has been a year long process and is draining both of us emotionally. She used to have high self-esteem and active. Now she's become shy and very selective with her friends. We have been through oral prednisone - big opps! Made it worse. 7 different topicals, 2 shampoos...no response to anything. Right now it covers from the scalp to the top of her feet. The soles of her feet and palms of her hands are the only place we have no 'spots'. She calls it reverse dalmation spots! She has a wonderful sense of humor about it We have learned and bugged our doctor to death. Is there anything we can do until October when we go to UNC?

Thanks,

Kim Beck

[PJ Leary]

Hi Kim,

I think I may be able to help. I sent you an email,please respond.

I think the peron to see is Dr. Feldman at Wake Forrest. There is a good chance we can get you in soon, if he is not traveling.

Please email me back so that we can help.

Regards,

PJ Leary

[KimBeck]

PJ,

I never received your email, I just tried to email you through the message boad. My email is KimBeck66@aol.com if it doesn't work.

Thanks,

Kim Beck

[krissy]

Hi!
I am not a parent, but I was perusing to see what you all post about.
I am 24 now and had a rough time when I was younger with my skin. I was diagnosed at age 5 with Mucha Haberman's disease (I still don't exactly understand what MH is, but it is similar to psoriasis) and at the same time with psoriasis.
My specialist in Indianapolis started testing me periodically for step infection. There was clear evidence that whenever I had a flare-up that step infection was present. However, I never showed any common syptoms of strep as in stept throat.
I am surprised that there hasn't been more research done in this area in the past 20 years.

I wish all of you good luck with finding a treratment that works best for your children.
For me sunlight is the best cure. I eventually was prescribed an at home light therapy unit. It saved a ton of money and travel time.

Krissy }:{

[GJT]

Looks like it's been about a year since I last posted on this subject. It has been a great year for my daughter Celena (refer to her story above). She's completely clear and has been all year. Could this be? I'm always ready.

I just had to tell you all about my newest situation. My son Nick (7 years) just had his second strep since December and guess what????? Yep, he came down to my room the other day with a rash all over his chest, arms and face and was itchy. The rash has now subsided but he has some remaining pea-size psor lesions (about 30) left. I can't believe I gave this *%$#@*( disease to both of my kids. That's not supposed to be the odds! Hopefully, the sun and bare chest outside will help him out with this first guttate flare. I just hope it's not going to be the same type of year I had with Celena ending with tonsils OUT (which seems to have been the answer).

Hope all the above stories have had successful remedies/remissions.

Gail

[Marielle]

Hello everyone
I am Marielle...I guess you can read all about Jessie (my 7 year old with P) on other post so I will just tell some of her story...She was diagnosed in November with P, she has Guttate and Inverse. Like Kim's daughter Jessie had P everywhere except her hands and bottom of her feet. She started all this from a strep infection that we did not know about. No sore throat, No Fever, No nothing...according to the doctor she said that Jessie probably had it for awhile. Then she was covered with spots....We finally got into a derm and then she was diagnosed. Since then like PJ she has been almost completely cleared up by using UVB. She even commented as she was running out the door yesterday without her coat on...I don't have to go to light sessions the real sun is out. Michigan winters are awful. We are having nice sunny weather right now and she is loving it. She will continue light sessions until May 5 twice a week but she already wants the real sun. My recommendation is to check into UVB sessions. Jessie would still be at 95% coverage if it was not for them. Our derm has also not thrown out the idea of her getting her tonsils out. We will see. What boggles my mind about all of this is that Jessie always got strep infections when she was younger. She even went and saw a throat doctor when she was two. So how come the P did not come out then? I guess I should count my blessings and be glad that I did not have to deal with an infant with P. Is anyone going to the confrence in August? Jessie would love to meet other kids. She has already met Mikey. She really likes to hear that there are other kids out there with P. Well I hope I helped and everyone always helps me cope. I come to this board almost everyday and feel like everyone is family. Which we all need to get our kids and ourselves the help we need.
Talk to you later.
M

[PJ Leary]

Hi Marielle,

I am so happy to hear that your daughter Jessie is doing so well! Watch those infections, as you know, the symptom to look for is psoriasis, not the usual signs of infection like fever.

Happy playing in the sunshine ( I look forward to it every year as well )!

PJ

[MBowden]

PJ Leary,
Hi! I'm 42 and have had psor for 22 years. I hope I'm clear on this but did you say your children had a strep infection but no fever and it repeated the same way several times? I ask because I often have periods of feeling bad, achy, sore throat, but very little or no fever. My family doctor doesn't see a problem, my derm doesn't take time to hear too much of what I tell him. I saw a rheumatologist in Chapel Hill last May, she says there is no arthritis, but feel that may no longer be the case. My right side feels inflammed almost ALL the time. I definitely have swelling in my right arm and leg! Just wondering about all this!! I'm not sure who to trust! I have no insurance at this time so going to new drs with new tests is kinda out of the question. I have heard of Dr. Feldman at Wake, he's doing a study right now on two new psoriasis meds. Sorry to ramble. Any suggestions?????

[KIMMY]

If there is one thing I hate more than P its strep!!!!I spent an entire summer on antibiotics, being treated for scarlett fever before I was diagnosed with P(guttate) turned mild plaque to moderate to severe plaque with inverse. Dr.s do really need to get a handle on this. AlthoughI have a history of P in the family. My sister and father, they had pustlular and fissure type on hands and feet. I had red spots, which does resemble scarlett I hear. Untreated strep can lead to scarlett fever. I guess that is why they thought I had it. Now for my daughters. When I had strep , the Dr advised me that either I got it from my students or my own kids and since I had two kids I should have them cultured. To my suprise, Myoldest had alot of strep in her throat with out presenting symptoms. My mother said when I was little everytime I went to the dr I for well check -ups I had raging earinfections and never displayed the pulling tugging or fever associated with it??? If I thought having my kids tonsils out would help to alleviate their suffering or chances of presenting with this disease so youngI would do it in a minute!!!! Although I was in my thirties when I developed P. It has been very tough on me, I can't imagine what it is like for a kid. I have a student with it, and it isn't a bowl of cherries for that dear soul. Best of luck to your children. Lets pray beg and hope that our children will see better, safer, less cumbersome treatment for this disease, or better yet a cure would be nice too!!!!!

[Marielle]

Hello all
What I am having done is since Jessie did not show any signs of strep when she got her P, we are getting a strep culture every three months. So far she has had one more strep infection without any symptoms. She right now has pink eye so I am having them give her another culture to find out if there is another strep infection. So my advice is if you think your P is getting worse you should get a culture. Jessie's doctor told us they think the orginal strep infection that brought out her P she had for about 5 months with no symptoms. I wonder if there were some symptoms if her P would not have come out at her age? Well I guess it is back to work.
M

[GJT]

Me again,
When my daughter, at age 7, got the good 'ol guttate it was a nightmare. The various derms only wanted to dispense the drugs and shrug their shoulders. One actually wanted to inject the MTX without even trying anything else. My research and discovery of the strep/psor connection is what saved me. After we yanked 'em (after about 5 streps in 10 months) she hasn't a spot on her.

Now it's my 7-yr old son. Had strep March 21 and broke out afterwards. I had to go back and read some of my findings and I had forgotten that usually the psor presents itself two weeks after the strep infection. At any rate, he's still popping up with new spots here and there and I'm worried it's going to be a repeat of that horrible year two years ago with my other child. Luckily school ends June 6 which will limit his exposure to repeat strep infections.

I did read in a paper that when a child develops the disease so young that their chances of adulthood psor is less. Anyone know any research or stats on this?

Just rambling this smorning. Thanks.

[Marielle]

G.J.
I personally have not read anything about adult p being less of a chance. I read ton about P and talk to my daughter's derm about stuff like that. I have read stuff from Mike and he developed P at young age and still has it. I wonder if we can find something out on this site? I often wonder if my other daughter will get P? She is only 10 months right now. Was it scary to see your son get it after such a hard time with your daughter?
M

[MikeK]

Hi G.J.,

I think it has to do with the type of P. From what I've read (under the various types of P on this site) Guttate P is often triggered by some sort of infection (there seems to be a link between Guttate and strep) and it's possible for people who get it as children to outgrow it. I hope that's true for your children and for every other child who suffers from Guttate P. The bad news is that I've also read (also on this site) that Guttate P sometimes turns into Plaque P. I wouldn't wish that on anybody, especially a child, because I haven't read anything about children outgrowing it. (Sigh! ) As Marielle said, I've had Plaque P (on my legs) since I was a child. I was diagnosed in the Spring of 1964, when I was 7. It's never completely cleared, so next year will be the 40th year of always having P somewhere on my body. It started to spread from my legs a couple of years ago. My derm says that I have a mild case, but it's now on my legs, hands, nails, in my ears, under my arms and on my groin area. (Sigh!)

Hope this helps.

Mike

[GJT]

Hello,
Isn't it glorious to be able to vent/whine somewhere that the recipients actually understand? Yes Marielle, it is scarey having the second child go through it. His guttate hasn't hit as hard as Celena's. She was covered and her lesions were raging. It's funny though, how both of my kids can't quite understand what all the fuss is about. It really makes me realize how self-conscious and insecure people are as they grow older. I did not get my psor until about 20 and it's been non-stop since (elbows, knees, butt, etc - lovely). It is WAY more painful to see and deal with on my little ones. Psoriasis seems to be in my every waking day this past three years..... last year my father was diagnosed with PA, got so bad he could barely walk, even shaved his head because he couldn't raise his arms to comb it. He's 100% now after MTX treatments (amazing - and not a spot on his skin any longer Whoops, rambling again, thanks for being there.

[Marielle]

Mike and G.J.
Thanks so much again for your support. One of the biggest worries that I am faced with is that Jessie is the one and only one in our family (so far) that has P. I am trying to get my mom to go in and get checked because her scalp is really bad but otherwise no one else seems to have any signs. That is why I question the fact that my Jillie might get it. I will be able to handle two, I think. I think Jessie was the same way as your children. She was so ho hum about her P. When some kid would look at her and say something to their mother, she would turn around and say, "oh! that, it is only my Psoriasis". We have educated everyone around her though. She did show and tell at school by showing the class her P and told them that they could not get it from her. That helped. I also think that I am glad she got it early. Like you said that you got it at 20, I bet that was a lot harder to work through than a kid that turns 20 and has had it since they were 6. Jessie is having problems right now with her eyelids being full of P. Her eyes have been swelling. Well talked to her derm on Friday and he said it was not because of her P. I was so worried about it being her P, I forgot that she has really bad allergies and I started giving her Clariatin to her. If it is not one thing it is another.
Mike, How is your mom? One more week before her derm appointment. I will pray for her and wish her the best.
Well back to work.
M

[GJT]

Hi Marielle:
Today Nick (my newly afflicted son) was home sick with a barky cough. Immediately I felt that dread that I had two years ago for Celena. When one 'bout of strep's flare starts to subside it seemed another upper respitory virus would crop up and in turn you know what that means..... more spots. I hope not. But that feeling of ridiculously wanted to put them in a bubble so they wouldn't get sick anymore! Nick's lesions are doing better. He's got some new cat scratches that turned into psor, so I warned him about 'owies'. We're like you (upper Midwest) and relish the outdoors at spring time. Today he and I were both out on the deck sunning our 'spots'.

As far as your family history goes, I think it's probably safe to say that Jille will not get it. The stats are 25% of psor parents children will get it. I think that my circumstance is different because my history has alot of it. My dad always had the psor and now the PA, sister always had psor, her son has it. And now there's me and my kids. You're right though, you'll be okay with it if it does happen. The first time is horrible. I cried daily for Celena. Remember this though...... she has been clear for almost two years! Keep hugging them!
Gail

[MikeK]

Hi Everyone,

Thanks for your thoughts and prayers, Marielle. I really appreciate it. Mom has her good days and her bad days. Her hairdresser recommended T-Gel and Tea Tree Oil and that's helped a lot. My sister (who's a nurse) asked her to stop using them for now so that the derm can see it untreated. It's going to be a relief to get some sort of a diagnosis. It's been a long couple months!

Your mom sounds a lot like mine. She knew that I had p. She knew that she had some sort of problem with her scalp and it still took a lot of convincing to get her to pick up the phone and make that appointment. Talk about frustrating!

I think that Jillie probably will be o.k. My younger brother and sister have so far managed to avoid getting it. (Knock on wood.)

It was much easier when I was a child. I didn't became self-conscious about it until I got to high school and I was able to keep it hidden. It's a good thing that I didn't get it on my hands until recently. I wouldn't have been able to handle it when I was younger. (Sigh)

Thanks again,

Mike

[Marielle]

Hey everyone,
For some reason today seems to be a day where I have a big smile on my face. Which with all the stress of my job, Jessie's P and having a 10 month old who is a tornado, this is good. Maybe it is because of the sun being out. I am glad to hear the stats about Jillian getting P. Like I said it would not bother me but knowing that one of them might not would be good. The insurance company would like that also. I noticed yesterday Jessie was itching really bad. Found a few spots that just appeared out of no where. Gave her an oatmeal bath and put on some Dovnex (sp!). She is getting a double shot of UVB on her legs because they are playing it hard to get. Her eyelids are getting pretty bad but since her eyes are swelled from allergies we are not worried right now. I do understand about the school and spreading germs. We received a letter on Friday that there has been a comfirmed case of strep in Jessie's class. Here we go again. She does not seem to show any signs so we just go and get a culture.
About my mom...It will take a lot of convincing especially since right now she does not have insurance. She was just laid-off. I will try and help her as much as I can by telling her about shampoos to use. She is using T-Gel right now. I have a question that I will probably post separately, but does anyone have any problems with bug spray? We live in a very heavy Mosquito area and with the West Nile Virus thing going around I want Jessie to be covered.
Well back to work.
M