Need Clarification.... blood draws

[earnestfamily7]

Ok... I have read the information and re-read the information and yet I am still lost... My daughter got her blood results ba - she tested postitive throat and vaginal strep w/rapid test on 1/12.... she started a asking/checking (is it Ok that , is t OK if, what if its not OK...) , sleep w/all lights on, afraid that she had an accident (pee), afraid that she has pee on her leg, hand a drop on shoe...) afraid she is going to throw up, constant sanitzer (we switched from purell to alcohol free) rage/anger defiance (crazy behavior) terrified of strangers, of being alone even 1 room over on same floor, - she was given a 10day course omnicef (ended yesterday) - she is also on .25 mg rispiderol (sp?) since 1/8 an I upped it 2 2xs per day on Monday (I really didnt want to but honestly she was crazy) .... and here asking was MUCH less... and she talked about sleeping in her own bed (big step b/c I dont think she has slept in her bed since christmas eve (and looking back I think she woke up in our bed!) she also gives a high pitched squeal / squeek when aggitated (maybe just to bug me.... but possibly a tic)

 

I had contacted dr.k (he helped us with our son via email and phone consult and gave us recommendations to give to our ped) He wanted to wait for blood results prior to making a suggestion...

this is what the nurse at the Dr office told me over the phone

ASO 200 (elevated per lab that did testing)

ASO titer 88 (norm)

AntiDnase (95) norm

 

Does this make sense ... I just want to make sure I am getting the right info from the nurse as she seemed unsure when reading the results... also what is the difference between ASO and ASO titer numbers.

 

I gave the numbers to Dr k and he replied that w/o elevated titers he could not make a recommendation one way or the other. and that to observe her w/o anything over the next couple of weeks an we would see where she is.... I agreed and asked about the antidnase as I thought that these #'s did not peak until 6 weeks.... I am keeping a journal and am going to start using Buster's system too...

 

maybe its not PANDAS but it sure looks like it to me! My ped is willing to work with me but need to give her the right information....

 

Last but now least... can anyone tell me if it possible to read all of someones old posts...topics and if so how...

 

Thanks again!!!

Steph

[earnestfamily7]

I thought I included this but looking back didnt.... she has great yesterday... asking checking down... no melt down... happy.... that is when she talked about sleeping in own bed... still talked abt the pee fears... but she seemed so much better on a lot of levels yesterday... more like herself - we'll see how she is today after school... it was a good morning too

[faith]

Those results seem right to me. Why were there two ASO? with the ASO, anything below 200 is usually considered normal. The other one seems normal too at 95.

 

So Dr. K. also looks at the titers? could you clarify that?

 

If you want to look at other posts, click on the name of that user and it should take you to the member profile page. on the left side, click on 'options' and pick what you want, either 'view members posts' or 'view members topics", .. that should give you all the posts and topics they posted.

 

 

Faith

[earnestfamily7]

Thanks Faith - That is what I am trying to figure out- why the nurse told gave me the ASO and the ASO titer number... she said Gabrielle did have elevates ASO levels but she seemed confused... she acted like it was 3 diff numbers even when I asked again...

I am going to call the office back this afternoon to see if I can get more clarification on the numbers...

 

an thanks for the info on how to view older posts and such.

 

Steph

[peglem]

Thanks Faith - That is what I am trying to figure out- why the nurse told gave me the ASO and the ASO titer number... she said Gabrielle did have elevates ASO levels but she seemed confused... she acted like it was 3 diff numbers even when I asked again...

I am going to call the office back this afternoon to see if I can get more clarification on the numbers...

 

an thanks for the info on how to view older posts and such.

 

Steph

 

Well, could it be the 1st ASO number she gave you (200) was just the range #...like <200 is normal, and the 88 is your child's actual titer level?

[earnestfamily7]

I did call back and different nurse gave me the same 3 numbers... ASO - ASO titer and AntiDnase.... she again said the lab they use marked her elevated at 200ASO... but normal on the other 2... I can understand the AntiDnase b/c it may not elevate for up to 6 weeks past infection... but the titer has me confused.... and I know I have read that they may not show elevated titers... I need to re-read that information again an get that to my ped....

[earnestfamily7]

thanks peglem- I did think about that possibility too. I am going to get a copy for myself too so I will review it an maybe post it for review when I do... Have fast does it take for a titer to elevate? If I recall you can have low titers and low antidnase and still present with PANDAS symptoms? did I remember correctly?

[peglem]

thanks peglem- I did think about that possibility too. I am going to get a copy for myself too so I will review it an maybe post it for review when I do... Have fast does it take for a titer to elevate? If I recall you can have low titers and low antidnase and still present with PANDAS symptoms? did I remember correctly?

Yes, my daughter's titers have never tested high, and she has many, many positive swabs.

[earnestfamily7]

thanks peglem- I did think about that possibility too. I am going to get a copy for myself too so I will review it an maybe post it for review when I do... Have fast does it take for a titer to elevate? If I recall you can have low titers and low antidnase and still present with PANDAS symptoms? did I remember correctly?

Yes, my daughter's titers have never tested high, and she has many, many positive swabs.

 

Thanks! I thought I read it somewhere and then went back and re-read it - It is helpful to actually hear it from someone with the 'experience of it' .... somehow in my mind it makes it more real.... I think this illness is making me neurotic!

[peglem]

thanks peglem- I did think about that possibility too. I am going to get a copy for myself too so I will review it an maybe post it for review when I do... Have fast does it take for a titer to elevate? If I recall you can have low titers and low antidnase and still present with PANDAS symptoms? did I remember correctly?

Yes, my daughter's titers have never tested high, and she has many, many positive swabs.

 

Thanks! I thought I read it somewhere and then went back and re-read it - It is helpful to actually hear it from someone with the 'experience of it' .... somehow in my mind it makes it more real.... I think this illness is making me neurotic!

 

I think there are several non-risers here.

[momaine]

thanks peglem- I did think about that possibility too. I am going to get a copy for myself too so I will review it an maybe post it for review when I do... Have fast does it take for a titer to elevate? If I recall you can have low titers and low antidnase and still present with PANDAS symptoms? did I remember correctly?

Yes, my daughter's titers have never tested high, and she has many, many positive swabs.

 

Thanks! I thought I read it somewhere and then went back and re-read it - It is helpful to actually hear it from someone with the 'experience of it' .... somehow in my mind it makes it more real.... I think this illness is making me neurotic!

 

I think there are several non-risers here.

 

We are one of those. I've been told that vaginal strep doesn't make titers rise. I believe my dd had vaginal strep. Her symtoms were very similar to your dd's, including the urinary issues. ( thankfully since starting antibiotics those are a thing of the past) Could you find Buster's posts that he recommends you show a doctor and bring them to your doctor and her to TRY a months worth of one of the dosages and kinds of antibiotics that are working for some of the kids here? That is how we started out and our doctor was helpful. Then we had a setback and I got scared and decided to get Dr. T on board. I'm glad I did.

 

Angela