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Unusual strep ongoing

My son got his first strep infection at 9years old almost 10.  It came on suddenly w/in hours.  He wasn't feeling good so I kept him home, He took a nap and woke up w/ a rash everywhere except for his neck and face and a 102.5 fever.  When he tried to get up his knee hurt tremendously and he couldn't walk.  Dr. tested him for strep and decided it was Scarlet fever, possibly Rheumatic fever. With his heart murmur we have been going through those procedures as well.  His knee started working w/in a week and then he was fine.  Periodically his foot will hurt at a certain spot or different spots in his body.  He was clear of strep as of Nov 6th and then Jan 15 realized he got it again.  NO signs at all except for a weird feeling in the top of his foot.  I only took him to the Dr. b/c she said to do that if he had any odd sensations in his body.  Again, NO signs of strep. (no fever, sore throat, rash, etc.)  So I guess I am wondering if anyone has had this happen.  The not being able to walk really scares me.  
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Avatar universal
COMMUNITY LEADER
Yes I guess my sequencer was the first capillary system, LOL. Shows my age.  My husband has a Ph.D. in molecular biology and he says he always ran sequencing gels with P 32 label. Now he just sends them out for about 5 bucks a sequence. Things have changed a lot. I worked all through college and up until 2007. That is when I hurt my back. Glad Big Dye is coming off patent, finally. I think clinical micro is interesting but then I have to work every other weekend and half the holidays. So, I'm not sure if I want to give up  my weekends anymore. HA.
mkh9
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1699033 tn?1514113133
ABI 3100 wow...  We started with the 3700 for capillary sequencing. ....big step up from pouring gels but ultimately a piece of crap.  We have had the 3730 xl for ten years now.  Nothing ever came out that was superior to it.   Big Dye comes off of patent this summer.  I can't wait.   I never did research because my lab is a core facility.  Hope you find something interesting when you do get back into the world of work.  
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Avatar universal
COMMUNITY LEADER
Your job sounds interesting. I did some sequencing of Strep pyogenes M types. This was in an epidemiology lab (contracted for the military). It was for various military bases across the country. It was to see which types wee more apt to be more virulent, and others to see if some areas in the country had more strains of a particular type etc. I never got to publish the study because they lost their funding and I had to leave. But I got to go to Johns Hopkins and also to the WHO to get trained on how to do their DNA sequencing on the 3100 ABI sequencer.  I was the supervisor there at the time and set up the lab. We did capsular typing of Strep. pneumonia and PCR of S. pyogenes, S. pneumo. Myoplasma and Chlamydia pneumonia, culture and serology to compare. It was an interesting place to work. I have forgotten a lot too. After that I worked for a biotech (Gen-Probe) and then the Veterans Hospital for a little while. I got a back injury and tendonitis so now I'm not working. But I hope to be able to go back soon. It has been 4 years. I have to do continuing ed. to keep my license and certification up each year.  I am debating what to go back into next.
take care,
mkh9
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1699033 tn?1514113133
I spend most of my time synthesizing and HPLC purifying peptides with a bit of N-terminal sequencing thrown in (dying service).  I oversee the rest of the services, DNA sequencing, next gen sequencing, DNA synthesis & purification.  Come June I will have been here 25 years so my micro knowledge has really gone right out the window sadly.  

As for the culture....I found at the time that my pediatrician did not routinely send away for culture.  They did it at the doc-in-a-box places though.  Anyway, all turned out well and we both recovered except for maybe that pesky murmur.  

Look forward to reading your answers....it refreshes my memory!  :)  
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Avatar universal
COMMUNITY LEADER
Sounds like quite an experience with your son with the negative swabs and positive cultures . However, the rule is that the lab staff or the doctors/nurses should be running the swab and if negative they should be automatically doing a culture. This is because the strep test has a lot of false negatives. What do you do as a biochemist?
mkh9
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1699033 tn?1514113133
I guess I shouldn't say "never" because I did spend some time in a micro lab at a hospital processing specimens, (the yucky kind!) but that was before I graduated.  
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1699033 tn?1514113133
My son did not suffer any permanent kidney damage thankfully.  It was strange because you know how moms are at noticing things but I was gone all day (all day outdoor concert) and I came home and there was pee in the toilet and it just looked funny to me...like there was blood in it.  So I asked who was the last to use the toilet and so I watched him.  I called the doctor and they said to bring him in that Monday.  We didn't make it to Monday because he woke up in the middle of the night every half hour screaming in pain that his back hurt.  After about the third time of putting clothes on to go to the ER, taking them off because he went back to sleep I was done and took him.  That is when I found out what it was.  I got him there in time and he spent about three days getting IV antibiotics.  He was only 4 at the time.   A trip to a kidney specialist when he was released revealed no damage.  After that, I didn't mess with strep.  If he had throat pain, I insisted on a culture because he always tested negative on the rapid tests.  I would even make them give me antibiotics right then and told them if it came back negative we would stop them....it never came back negative.  After a while there was no more fighting with them...they gave me what I wanted.  

For my own, I had a strep exposure but did not have any throat pain whatsoever.  I had no idea that Strep could cripple a person like that.  I felt like I was 80 years old.  

Even though I have a microbiology degree, I have lost a lot of knowledge because I don't work in the field.  I never worked in the field actually.  I do biochemistry at my job.  
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Avatar universal
COMMUNITY LEADER
Yes Strep is one of several Crazy scary bugs out there. It can be a sore throat or it can cause necrotizing fasciitis and eat your leg off. Then there is this rheumatic fever and scarlet fever. My best friend woke up with a rash and high fever and opened all the windows (it was winter). Luckily her other friend lived near by and walked in and said what are doing it is freezing in here. He is a microbiologist too like me and he took her to the hospital. She had scarlet fever from Strep throat. I don't know if your murmur was always there like mine they didn't find it until I was in my 20's and it is a small one. I never had regular strep throat (caused by Strep. pyogenes) I had one caused by another strep and it knocked me on my butt. I had a 103 fever and I could barely drive to get to the doctor. For you they should have seen the white patches on your throat or done an ASO test. I don't understand the doctors these days. What are they teaching them? It is more infectious than contagious. Sort of like mono is transmitted.  Wow, so your sons kidneys were damaged by strep? Is it permanent or temporary? I have read this but haven't seen it. Strep has various toxins. A bad bug indeed.
mkh9
Helpful - 0
1699033 tn?1514113133
Damn...I needed you when I had this!  LOL  They guessed...fibromyalgia, lyme disease, it wasn't until the rash showed up that I was finally diagnosed.  I mean I could barely walk into the outpatient hospital.  Also, I gave it to my sister!  She had the benefit of me so was quickly diagnosed.  So it is contagious.  It is funny you mention a murmur because I never had one either but developed one.  Did have an Echo and nothing obvious showed up but continue to have the murmur...or at least doc says he can hear it. My son had Strep Nephritis and then I got that funky Strep....Strep is crazy scary!  
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Avatar universal
COMMUNITY LEADER
From what I have read things that can be done now are ASO test for ongoing rheumatic fever (this is anti-streptolysin O so it looks for the strep antigen). If she really thinks he has rheumatic fever and it does sound like he may have it due to the joint problems and did his heart murmur come on with the Strep or did he have it at birth? If it came on with the strep that would be a sign of the rheumatic fever.  So, they should be giving him low dose long term (3-5 years) of antibiotics to make sure it doesn't come back. You may want to see a infectious disease specialist. But if you feel good with doctor stay with that one.  You  can also find out if there was damage to the heart valve by later getting an echocardiogram but for now getting an Xray and EKG if they didn't get one yet to look for inflammation. Hope this helps direct you. The low dose antibiotics are important. So, this is something I would recommend from what I read and as a microbiologist. I am not a doctor but you might ask about that. I'm sorry to dump all this on you . You must so scared and stressed. I am just trying to help and usually my way is to get information out there.
take care,
mkh9
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Avatar universal
COMMUNITY LEADER
So sorry you son got Strep throat and rheumatic fever. This is from the Mayo Clinic:

Rheumatic fever symptoms may vary. Some people may have several symptoms, while others experience only a few. The symptoms may also change during the course of the disease. The onset of rheumatic fever usually occurs about two to four weeks after a strep throat infection.

Rheumatic fever signs and symptoms — which result from inflammation in the heart, joints, skin or central nervous system — may include:
•Fever
•Painful and tender joints — most often the ankles, knees, elbows or wrists; less often the shoulders, hips, hands and feet
•Pain in one joint that migrates to another joint
•Red, hot or swollen joints
•Small, painless nodules beneath the skin
•Chest pain
•Sensation of rapid, fluttering or pounding heartbeats (palpitations)
•Fatigue
•Shortness of breath
•Flat or slightly raised, painless rash with a ragged edge (erythema marginatum)
•Jerky, uncontrollable body movements (Sydenham chorea or St. Vitus' dance) — most often in the hands, feet and face
•Outbursts of unusual behavior, such as crying or inappropriate laughing, that accompanies Sydenham chorea

When to see a doctor

Your child should see a doctor if he or she has signs or symptoms of strep throat. Proper treatment of strep can prevent rheumatic fever. Call your doctor if your child has any of the following signs or symptoms:
•A sore throat without cold symptoms, such as a runny nose
•A sore throat accompanied by tender, swollen lymph glands (nodes)
•Rash
•Difficulty swallowing anything, including saliva
•Thick or bloody discharge from the nose, which is more likely in children under 3 years of age

Call your doctor about a fever in the following situations:
•Newborns up to 6 weeks with a fever of 100 F (37.8 C)
•Children ages 6 weeks to 2 years with a temperature of 102 F (38.9 C) or higher
•Children age 2 or older with a fever of 103 F (39.4 C) or higher
•Any fever that lasts more than three days

Also, see your doctor if your child shows any other signs or symptoms of rheumatic fever.

I would say any fever, sore throat, sore joints, problem walking, pounding heart, rash. Unusual behavior.  I will try to see if there is anything else that would help you to know when to take him in. I think he got it again because it was still in his body maybe in a joint or heart valve and they need to treat him until it doesn't come back. Streptococcus pyogenes can have various toxins. Unfortuanately, your son got  a bad toxigenic strain. It also has to do with how good the treatment is. Let me see if I can find any thing else of help to you. I may not but it is worth looking at.
take care,
mkh9


Helpful - 0
1699033 tn?1514113133
Hi there.  I had this exact problem with strep although I never had a sore throat  I did have a fever.  The painful joints started first with pains kind of just showing up randomly in my joints.  Also my fingers were swollen...not to look at but you can tell when your fingers are swollen when you try to bend them.  I had a very hard time walking.   They tested me for lyme.  It wasn't until later that the scarlet fever rash showed up.  The strep infection was in my blood stream.  Once I took the course of antibiotics it was gone.  So I'm not sure that something like a throat swab is going to indicate that the infection is indeed eradicated.  Maybe have to ask for some blood work to be done.    
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