These rare strep cases are concerning

[Clash]

Hi all. I've been off and on but haven't posted much about C.

He's still rocking along. He's lost weight again over the last month or so. We did blood work last week including vitamins and iron panel. C felt it was iron because he's been really fatigued. Nope HGB was good and ferritin was higher than it has been in some time. In fact, all labs looked good(always seem to). He also had some stool tests done including FC but they haven't come back yet. His GI appt is this upcoming week.

Anyhoo, these stories of rare strep that migrates causes organ failure and had led to amputation has really bothered me for some reason. I can usually see these stories and realize that the situation is really rare. Also, I try not to add to the worry plate unnecessarily. But, after reading these stories I have this barely controllable urge to put C in a bubble! I was already freakin about the flu which is weird as well since I'm usually ok with that as well and he's had the flu while on meds and in a flare before so it isn't necessarily the unknown.

Hope everyone is doing well. I've tried to post a couple times but I think I'm just in a funk because it seems nothing has worked so far for C and I don't really know how to wrap my brain around it.

 

[Maya142]

Sending hugs Clash!! Hope the FC results are good.

 

[Pilgrim]

I'm glad you update us. I was reading your post and thinking about how it feels to know something is off and be waiting for results. That tension goes all sorts of places.
I hope the fc is a pleasant surprise. Is he still able to keep up with his busy life?

 

[Trysha]

Try to keep it in perspective regarding rare strep infections...emphasize rare....
Lots of careful hand washing helps to avoid infections.
Also small doses of bacteria help to build up immunity..
It is very hard when our little ones are so afflicted with crohns and I can fully understand how you feel
Feel better soon
Hugs
Trysha

 

[pdx]

I totally get where you're coming from. E's cold from a few weeks back turned into ear infections turned into pain behind her ear which led to a head CT scan yesterday to make sure the infection hadn't migrated into her bones. It hadn't, but I'm feeling shaken, and I was telling my husband just last night that I want to put her in a bubble right about now!

I know I have to let her live her life, though, and try not to worry too much about things I can't control, or things that probably won't happen. Easier said than done... Hang in there, and I hope that you get some answers when you get all your son's test results back.

 

[my little penguin]

Hugs Clash
It's hard when things don't show on bloodwork and nothing seems to work

Pdx - Ds actually had mastoiditis two years ago.
Being aware of symptoms really is the only that by you can do .
He was treated quickly with iv abx and was fine
All because someone had mentioned it when his ear infection wasn't clearing.
He had no fever btw

 

[Tesscorm]

I'm sorry you're feeling so worried about this. I guess, after receiving one dx, it leaves us all a bit more quick to the worry trigger when something new comes along. Even when we know it's probably nothing to worry about, it's hard to not let the worries and thoughts run. :ghug:

I hope the FC results and appointment are good. Could he have lost weight for some other reason?

But, I (as all the other parents here) know how you're feeling. Toronto has had a mumps outbreak, 27+ cases already this year and typical is 4-5 per year. Not sure if you remember but S doesn't have immunity (or, at least, not full immunity) to mumps. This has kept me on edge. Added to that, he's been sick for weeks and weeks now... flu, chest congestion, coughing, etc., etc. He's been to walk-in clinic two or three times and ER twice. (Finally seems to be going away!) Now he's saying he's had night sweats off and on, d a few times and just isn't feeling 'well'. He's worried it's crohns. But, he's been sick, with one thing or another, for months now (since shoulder surgery in August), so I don't know if he's just sensitive/worrying too much on everything and it's just a 'passing' thing or if I should be worried (of course, I worry... just in case!). Anyway, he had remi yesterday so I'll be calling for his results this week...

But, try not to worry about strep. :hug: Update when you can about his results and apptmt... and sending lots of wishes that all is good!! :ghug:

 

[pdx]

Pdx - Ds actually had mastoiditis two years ago.
Being aware of symptoms really is the only that by you can do .
He was treated quickly with iv abx and was fine
All because someone had mentioned it when his ear infection wasn't clearing.
He had no fever btw

Yeah, E didn't have a fever either. She also didn't have one last year when she had strep. Makes it harder to figure out what's going on! Glad to hear that your son's mastoiditis was found and treated quickly.

 

[Clash]

Thanks guys. Tesscorm, I hope it's like you said and S has just been over stimulated by all he's gone through and is on the mend health wise.

I usually can handle reading stories, hearing about friend's health issues or immersion in research articles. Just seems lately my anxiety gets away with me at the least little thing.

I'll update when we know something.

 

[Maya142]

While we're talking about weird infections - we learned this year that we should have M's throat swabbed with EVERY single sore throat, which is obviously a real pain with a kid who is in school/college and around sick kids a lot.

But we didn't swab her sore throat once this year - she refused to go to her pediatrician because "it's never strep!" But then it didn't get better and so she finally agreed to see her pediatrician.

Well, it's turns out, it wasn't strep, it was a staph. infection in her throat. The ped. was shocked - said it's very unusual to have staph in the throat.

M, of course, maintains that she was right and it wasn't strep...:ybatty:!

Needless to say, next time I'll make her get checked earlier.

 

[Tesscorm]

How are you feeling, Clash? Sometimes, when we're tired, fatigued, etc., it's harder to control emotions and those worrying thoughts. Just take care of yourself too and not let yourself get run down too! :hug:

 

[Maya142]

Sometimes looking at the research and seeing what meds are coming next helps me -- I know there are LOTS in the pipeline. It makes me feel like there is hope, especially since my kiddo has not really responded to any meds yet (for her AS).

I know C is in the same place for his Crohn's and it's a very frustrating and discouraging place to be in - sometimes it feels like things are never going to get better.

But I figure there are new things coming out every year - something has got to work for her soon.

I just try and hold on to that - something will work eventually. We just have to find that magic combination...

 

[Tesscorm]

Hey Clash,

I'm curious... what 'rare' strep cases were you talking about? When I initially read your thread, I assumed it was something that was in the news in Georgia (or U.S.) because I hadn't heard anything about it. But, Monday night, there was a case of strep here that ended with a serious complication... so, just curious???

By the way, we ended up at ER again on Monday because S was sick... he was diagnosed with strep. :ybatty:

They were extremely diligent at ER with him... took cultures, blood 4 or 5 times, throat swap, nose swap (flu), x-ray, checked for TB, mono, strep and bacteria in blood! I didn't hear about the serious case (different hospital) until later that evening so now I'm thinking their diligence may have been related to the case here.

Now that he's started on abx, he's already feeling tons better. Just seemed so coincidental that you posted and then it happens here, so I'm more curious rather than concerned... although, am a bit worried that he's going to a ski resort this weekend ... hoping he doesn't relapse or come into contact with anyone with mumps.

 

[Maya142]

Tess, here is the article I read: http://nbc4i.com/2017/03/19/rare-case-of-strep-leads-to-amputation-for-tennessee-woman/

I haven't seen anything about cases in the northeast, just in the south of the US. But I haven't been looking very hard because the article scared me!

I'm glad the ER was so careful with S!! Fingers crossed - hope he recovers quickly and doesn't catch anything else.

I suppose he wouldn't consider staying home and resting this weekend, right?!

 

[Tesscorm]

:rof: :rof: Nope, not a chance he'll stay home. He's been sick so much of this year and missed so many social events, he's not missing the 'weekend' event. His only concession was that he wouldn't ski because he didn't want to risk injuring his shoulder. Oh well, I gave him tons of 'instructions' - stay away from anyone sick, stay warm, etc., etc.

But, wow, the story you linked is very similar to what happened here. A poor little girl lost her arm and part of her leg because of strep. It is scary!

I'm glad I hadn't heard of these stories before I took S to hospital! I feel better that he's on abx and already feeling better.

 

[Tesscorm]

http://www.cbc.ca/news/canada/toronto/mississauga-girl-infection-1.4032910

Link to our news story...

 

[Clash]

There were actually 2 different stories I read. One was the woman maya142 posted about and the other a man in the US.

Tessa I totally get Smart not wanted to skip events. C has gotten sick with some viral respiratory illness over winter but that's been it. His gf has had the flu, another viral respiratory illness and bronchitis. Neither have slowed down.

 

[Tesscorm]

Maybe these types of strep complications are in the news most years??? I just picked up on it because you'd mentioned it the same week. But it is scary that something so common can change your life!:ywow:

I don't know what's been causing it but S has been sick, off and on, most of the winter. Especially the last 6 weeks or so. Same thing seemed to have happened last winter. He's blaming remicade?? But, as it's only been this year and last, IDK??? Could just be bad luck?? He's been on remi for four years now but had no problems before last winter...

And, yeah, I get why he doesn't want to skip it, I didn't have the heart to try to convince him to not go. All I could do was google alcohol and abx :lol:, tell him to stay warm and dry and hope it doesn't do him any harm. (At least I don't have to worry about skiing... )

 

[Clash]

Please excuse all the typos my cell phones autocorrect loves making me look like a babbling idiot.

My husbands niece was never able to tolerate the biologics because she ended up sick with infections that always had opportunistic infections that landed her in the hospital ICU every single time. But it was from the beginning and it was always dire.

C never had a lot of sickness on remicade. He did have the flu the one year we didn't get the shot at the the beginning of flu season but it passed quickly and wasn't bad (he was on Tamiflu)

I think the overuse of broad spectrum fluroquines and antibiotics in general is creating an environment where superb us are being created.

But, thinking of it now, infections may always freak me oit. The thought of summer time now just reminds me that those bacteria in fresh and salt waters will be in the news. You know the one that is the flesh eating bacteria and the other the brain eating bacteria. We grew up swimming in swampy, stagnant water, ponds, warm rivers, drinking from hoses etc and didn't think twice about it now these news stories want me to put the kids in a bubble! And bring out the bottles of wine!

 

[Maya142]

I didn't really think he'd stay home . It would be too much to ask if we could stop worrying for a weekend right?!

For what it's worth, I think it's probably unlikely that Remicade is causing infections 4 years after starting it.

My daughter had a number of infections last year - something like 4 or 5 throat infections (including the staph.), a sinus infection and two infected toenails (requiring a week of abx :ybatty and CDiff. She had 7-8 rounds of abx, perhaps more.

In her case, BOTH her rheumatologist and GI said it was very unlikely to be her biologic (even though she is on a high dose). Instead, they thought it was Imuran. They both said biologics are quite safe compared to Imuran, in terms of the infection risk.

Anyway, she was taken off Imuran and so far so good!

It's probably just bad luck that he's had a bad year...and the bad habits college students have - tell him that staying up late is linked to lower immunity!

Hope he has a wonderful time on his trip and does not get any more infections!

 

[Pilgrim]

Maya142 are there antibiotics that you steer away from? Any that gave trouble?

 

[Maya142]

Ceftin and Cipro were the ones that caused CDiff for M. Both are known to cause CDiff (though really any antibiotic can). She was treated with Vancomycin for the CDiff.

The one she tolerates pretty well is Amoxicillin. She's pretty sensitive to abx - many cause diarrhea (Bactrim, Keflex and of course the ones that caused CDiff), but Amoxicillin is ok.

Obviously, it depends on your kiddo and the type of infection...