Low strep pnuemo strep titres?

[JoyBop]

Hope everyone is having a great Thanksgiving weekend. I've missed this place while it was down!

The blood work from our immunology appointment are slowly trickling in. There were a few surprises. The most shocking was the lack of strep pnuemo titres. Out of the 23 tested, he was deficient on 21 of them. He is 8yo and was up to date on all his PCV7 vaccines. Does anyone have experience with this? I know they are going to want to re-vaccinate him to recheck titres. Will this be a nightmare for PANDAS kiddo?

 

The other surprises were that he is slightly anemic and Im worried that the around the clock use of motrin since May is causing a bleed.

 

ANA came back positive at 1:40 of the speckled variety.

 

Anyone have any comments based on experience?

[PowPow]

My daughter had positive ANA; speckled also. Some further rheum workup led to more antibody testing. She has positive RNP antibodies and positive (on multiple occasions, now) for anti-cardiolipin antibodies. Rheumatologist feels this is (conclusively) the cause of her prolonged, relapsing (after tx) illness. The RNP antibodies are specifically related to the speckled pattern positive ANA. ~ though I think there are a few other antibodies that cause the speckled pattern. It is associated with SLE (of course, neuropsychiatric lupus looks a lot like PANS!), MCTD and other disorders. I am seriously hoping that the consistent and high-level treatmemt my daughter is getting now will prevent any progression to other organs, as in MCTD or SLE.

Edited November 30, 2013 by powpow

[JoyBop]

What is the RNP antibodies? We didnt have that done. Still waiting for the cell marker studies. Must look up what SLE is. This is all new to me. What treaments were you able to get to treat these things? I have heard the pos ANA is a non specific finding but shows that there are auto- antibodies present, but in and of themselves dont mean much without clinical symptoms of Lupus, ect.

 

Im particularly worried that revaccinating him will make him flare. I know thats what the next step is.

[Hopeny]

The low titers may possibly indicate an immune deficiency. If your child has had prevnar vaccines theoretically they should have more immunity . Typically they would give a prevnar vaccine and see the response, no response would warrant evaluation/possible treatment. (Ivig, vaccines , prophylactic abx etc) my 4 yo had a good response to the additional prevnar vaccine, waiting to see on my 9 yo. Both my kids have an immune complement deficiency. I'm not a doctor, this is just my experience

Edited November 30, 2013 by hopeny

[PowPow]

SLE- systemic lupus. What are the cell marker studies?

So , the way I understand it: ANA shoes positive antibodies against your own cells. Depending on whcih pattern is shown, it gives a clue as which antibodies are present. So my daughter's doc knew where to start looking to ID the antibody. Does that make sense?

Several other docs had kind of shrugged off her moderately high sed rate and pos ANA saying "lots of the normal, healthy population has those"- yes, but the deal is: my daughter was not normal or healthy.

 

she is getting IVIG (1g/kg) ; high dose solumedrol monthly for 6 months; cellcept (oral med) daily

 

still on Augmentin form PANS doc (1000mg XR twice a day)

[JoyBop]

Hopeny, the vaccine didnt cause a flare in your kids?

All my kids had the PCV7 state supplied vaccine.

 

Pow wow, yes, that does make sense.

The cell marker study looks at the b cells and t cells. They are the cells that make the antibodies. Next we are getting a GI work up done. The immunologist made some remarkable connections between DS's past GI complications and his current issues. He will be getting scoped to look for eosiniphils in his esophagas, and looking for the source of blood loss. He has had trouble swallowing and complains of reflux. I thought we were out of the woods with all of that stuff, but may not be after all. ITs been a long road!

[Hopeny]

Hopeny, the vaccine didnt cause a flare in your kids?

All my kids had the PCV7 state supplied vaccine.

 

Pow wow, yes, that does make sense.

The cell marker study looks at the b cells and t cells. They are the cells that make the antibodies. Next we are getting a GI work up done. The immunologist made some remarkable connections between DS's past GI complications and his current issues. He will be getting scoped to look for eosiniphils in his esophagas, and looking for the source of blood loss. He has had trouble swallowing and complains of reflux. I thought we were out of the woods with all of that stuff, but may not be after all. ITs been a long road!

I know this is controversial but I have not ever seen a flare that I could directly correlate to any vaccine, prevnar is not a live vaccine. For full disclosure I am probably a lone wolf here in that I am very pro vaccine generally, my pediatrician missed a whopping cough vaccine and my then 3 year old got it and that was one of the most terrifying times of my life. I do space them out though. Both my kids have the immune complement protein deficiency (mannose binding lectin), one is the PANDAS/PANS (strep, Lyme & co, mycoplasma etc) kid and the other just gets sick ALL the time. Having no strep pneumo immunity makes you vulnerable to all sorts of nasty things like pneumonia, meningitis etc so it's important to really learn about it and consider all options. Good luck.

[JoyBop]

Hopeny, you are not completely alone. We always vaccinate our kids as well. I also feel like a line wolf at times as we do choose to give meds to our kid to help with horrible symptoms. I've been nervous though since dd began her vocal ticking after the flu vaccine. Everytime DS gets even slightly sick he flares like and man so I am a bit nervous. But besides that my kiddo is never sick. I will do what they recommend but I'm so afraid of a severe flare. There's only so much more I can take... But I will do anything for coverage for IVIG.