Can't relate to Strep thing

[Wilma Jenks]

My child's labs are pretty normal. No strep or any of the other stuff people talk about. Just the Cam Kinase being 166, high clostridia and REALLY WEIRD behavoiur. Does anyone have a similiar situratin. We are still waiting for the Lyme test to come back.

[Wilma Jenks]

the only labs that show anything is her Cam Kinase test and she shows high clostridia. all other tests r fine. no strep or any of the other stuff people talk about. all blood work comes out fine. does anyone else have this?

[norcalmom]

yes. alot of kids don't have high titers. or titers at all. other infections can set off this pandas auto-immune reaction. lyme, mycoplasma (who knows what else - those are 2 that cunningham and swedo are on record for citing). So, weather your child is infection free, and only sufferes fro the post infectious part is the question - and why many of us are digging deep to make sure we have rid the kid of any possible infections (which will just make them replase).

 

WE have minor immune stuff going on - but minor - at least not major enough for insurance to consider it an issue. we have immunologist working on one last autoimmune thing - ds doesn't make pneumoniae titers - but since he doens't get pneumonia or bronchitis, it ins't considered an issue. Normal people would revax and see how child reacts - but I'm to chicken to vaccinate.

 

Weather or not immune issues will get worse the longer it goes untreated is another question. according to some information on pandasnetwork.org - about 15% of pandas kids have immune def. or immune related issues. And less than half have high strep titers. So, you are actually in the majority.

 

Does your child get worse after viruses - or only strep - or is she just in constant exacerbation?

[Wilma Jenks]

That's just it. I never see her get a virus or strep. She has really never been sick that I could visually see. One time she had a fever. I thikn it was at ten days old. She was sick from birth. I remember the first few nights of her life. She was wired and could not sleep and has never changed. At ten days old, she had a walnut sized lump under her ear. My gut tells me tht was some kind of infection or something. Surgeon said a pulled muscle. I think I am right though.

[ma2ar2rm2]

WE have minor immune stuff going on - but minor - at least not major enough for insurance to consider it an issue. we have immunologist working on one last autoimmune thing - ds doesn't make pneumoniae titers - but since he doens't get pneumonia or bronchitis, it ins't considered an issue. Normal people would revax and see how child reacts - but I'm to chicken to vaccinate.

 

My PANDAS dd 9yrs old.. has this same thing going on.. We went to an immunologist and had the immune testing done end of Dec.. They said she wasn't making the S pneumonie IGgs. I was scared out of my mind to revax her for them. So worried I was going to send us back into PANDAS ###### and lose her again like we did last spring. But the immunologist told me she couldn't promiss anything but that if her immune system wasn't working correctly that could cause the auto immune responce which PANDAS is.. and that if they got it working correctly there is a chance that it would stop doing the auto immune responce.. And since the s. Pneumo IGg antibodies fight agaist 23 differnt bacterrias

that totally explained all her reaccuring infections.. including strep, ear infections, mono.. ect.

 

Like I said I was so worried about revaxing but either way I went it was a risk.. Do I revax and sent her off into a major flare of PANDAS.. or what if I didn't revax and things never got fixed...

 

I took the gamble and revaxed.. we had about 2 maybe 3 weeks of mild PANDAS symptoms after doing it.. but she came out of it without having to up her antibiotic or doing anything different then what we have been doing for the last 9 months and that is daily antibiotics.

 

We are waiting now on the next step of this immune stuff.. We had another lab taken on to see if her immune system has responded.. We go back in to find out the results on Feb 18,11.

 

 

As far as not having high ASO ... my dd falls into that group also... All her PANDAS stuff started when she had Mono and for about 15 months I let it go.. thinking she was acting different because she was still just recovering from Mono.. her sysmptoms would come and go... be mild then get over the top though out that time.. Also in those 15 months... she had 2 sinuse infections,an absessed tooth 3 ear infections and 2 strep infections.. each time she was sick.. the PANDAS would get worse(though I had never heard of PANDAS at the time... Last year around this time in March 2011 she was really bad again... this time I took her to the doctors,I was crying my eyes out to him.. saying something is wrong with her and I can't blame it on the mono any longer.. she was a mess and I didn't know what to do.. He saw her said she needed a child psychiatrist.. He thought she had OCD, anixity and a conversion disorder. Her biggest thing at the time was sensory issues with her cloths hurting her really bad.. she would wear things about 4 or 5 sizes too big and still have major fits and melt downs that they were too tight and hurting her.. The doctor thought she was taking her fears and turning them into the phyical symptom.. So we got on a waiting list.. and while waiting.. the very next month.. my dd well for a lack of a better way to describe it went out of her mind she couldn't sleep, she couldn't put cloths on.. she sat naked in the middle of my bed crying her eyes out for just about 48 hours.. screaming her head off that anything that touched her was hurting her.. the only time she slept was when she passed out and fell over, then she would wake up again crying that the sheets touching her was killing her.. She also started running a fever.. When we got her to the doctors it took 4 adults to hold her down(she at the time was like 45 pounds soak and wet)and one to pry her mouth open to get a strep swab.. It came back post. for strep..

 

it was at that time that her doctor told me I have good news and bad news.. Good news is I no longer think she has a conversion disorder... bad news is I think she has PANDAS... He started her on the antibiotic.. after the 1st dose she was sooooooooooo much better... after 24 hours she was like 40% better.. after 2 days she was like 75% better.. by the end of the 10 days she was 90% better... by a month on antibiotics she was 99.9% better and back to her normal self.. where she stayed until mild of step when she got another infection. and she had a big flare again.. nothing like last spring but still bad leaving her crying for hours and hours on end and having alot of the other PANDAS symptoms.. At that time we checked her ASO and all of that.. and everything came back normal.. at the time we didn't know there was an infection.. just knew she was bad again and that is why they did the labs.. about two weeks after the labs.. I saw she had a big ball of puss on her gums.. it was another absecces... we upped her antibiotic and had all the dental work done.. and boom.. back her 99% normal again... we have yet to get to 100% but 99% is good.

 

I have chattered on so much in this.. that I have forgot what my point was... sorry...

but her ASO and numbers don't show high but she does have PANDAS.. and she also has something minor showing up on immune testing..

[amyjoy]

Just my 2 cents-

Cam kinase elevation in and of itself, for strep or any other reason = encephalitis = PANDAS/PITANDS = symptoms.

 

clostridia in and of itself for many kids = nasty neurotoxins = wierd symptoms and behavior.

 

so your DD has alot that you can work on. with pitands my understanding is that you may or may not ever know the offending agent, but that it has spurred on the autoimmune assault resulting in PANDAS-like syndrome due to inflammation response. its like, all about inflammation, i believe.

 

clostridia has some waste products that can be neurotoxic and affect a child (or adult) through chemistry so very important to clear it up.

 

hope that helps.

[mama2alex]

Our son often doesn't have typical symptoms to illnesses. He had never been diagnosed with strep and we wouldn't have suspected it was involved unless he'd had a slightly elevated Anti-D Nase B titer. Recently my husband came down with a terrible case of strep and I was sick too, although my rapid strep was negative. My son only had one day of fatigue and a slightly running nose. His rapid strep was negative. But a few days into it, he had a significant PANDAS exacerbation. After almost two years of PANDAS, this was the only tangible confirmation we've had that he reacts to strep with neuropsychiatric symptoms. He is being treated for Bartonella/Lyme and had improved greatly prior to this.

 

I guess my point is that these kids' immune systems seem to respond atypically, so not having physical signs of illness doesn't equate to never being sick. And not having elevated titers doesn't necessarily mean no exposure to strep.

 

Have you had a full immune workup on her? Some kids with PANDAS are diagnosed as immune deficient and this can explain a lot.

 

Jennifer

[airial95]

All of our bloodwork has come back normal - ASO, immune everything. We have not done the CamK test because of his age - they need him to be 4 to include in the research, so we'll be doing that come October. In fact, Dr. Troufexis (in Dr. Murphy's office) made an off hand comment that some marker in his immune workup (I can't remember which one) was the best she had ever seen in any child which should make him very resistent to skin type infections - the irony - his PANDAS started with an impetigo infection!!

 

He usually shows behavior symptoms long before any symptoms of illness. On our most recent strep infection (positive culture 2 weeks ago), there was NO sign of him being sick at all. Just lots of pee pee accidents, two new tics (very minor) and hopping and clapping through the kitchen tiles. Weird enough for us to go get cultured and bam.

 

This happened with his two infections last year too - although, with at least one of them he started vomitting a few hours after we left the Dr. with a positive swab...so eventually there was a physical symptom.

 

Our pediatrician just ordered a full genetic blood analysis to see if that tells us anything - we should have those results in another 2 weeks or so...we'll see what that tells us!