Which Blood Tests

[DebC]

Our 9 year old daughter was diagnosed with PANDAS in January at the age of 8. Her behaviors normalized after her bout with strep and treatment with antibiotic and then time. I have seen an upswing in obsessive neatness in the last 2 weeks. Her brother had strep and our daughter was also put on Augmentin for 10 days during that time. The behaviors have continued to increase ever so slightly. I want to stop anything that is starting to happen and want to get a blood test run. I plan to request that her pediatrician run a test for the ASO (Antistrep-O) titer and the AntiDNaseB titer. Is there any other test that I should request when they are doing bloodwork? If these titers are high, then I have an argument for a higher dose of antibiotic, correct? Our pediatrician diagnoses but does not treat PANDAS so I'm hoping I can convince him to consult with other PANDAS doctors.

[EAMom]

Where do you live? Maybe someone can rec a doc.

 

Most/many kids on this forum are on prophylactic abs (some at full-strength, at least initially). Augmentin and Azith. are the ones that seem to be the most sucessful. 10 days worth of abs don't seem to cut it for pandas kids.

 

Be sure to re-culture brother 14 days after abs to make sure he is neg.

 

This is from another recent post:

But what exactly does longterm antibiotics do?

 

wendy (or anyone), with regard to SC or RF, when they are put on high dose abx, again, what is that for? just to make sure they don't GET another infection? or is it that it takes long to get to an infection somewhere that can't be detected? I'm just confused, because if it is strep bacteria that they were trying to eradicate, shouldn't it take the normal amount of time (ie. a 10 day course), or is it just that those patients with SC keep getting it back, so they abx is to keep it away?

 

thanks, I just really don't understand about the longterm high dose abx that many of you here seem to make a difference. I just wish I could understand it better.

 

 

Faith

and the answer:

 

There are multiple things here:

 

1) For SC or RF, prophylatic antibiotics are used to prevent re-infection after the intial illness. Subsequent attacks are usually much more severe so the attempt is made to prevent or reduce the severity of re-occurance through long-term antibiotics.

 

2) In 1976, Husby http://www.ncbi.nlm.nih.gov/pmc/articles/P.../je14441094.pdf showed that emm-type 6, 11, and 12 were implicated in RF and SC. Subsequent studies by Wannemaker and Kaplan have implicated other strains (such as those exhibiting M1 and M18).

 

3) While penicillin is still effective invitro against GABHS, in early 2003 it was shown that strep can go intracellular (like a virus) http://www.journals.uchicago.edu/doi/pdf/10.1086/508773 . Penicillin is less effective at clearing for patients who have this strain (even in immune competent individuals)

 

4) The treatment dose and duration for antibiotics is based on studies of children who are not immuno-compromised. The objective of most of the studies investigating efficacy is to clear the disease in > 80% of children within a prescribe time window (typically 14 days). However in greater than 10% of cases, GABHS is not cleared.

 

Now we get to PANDAS. Antibiotics do not in and of themselves kill GABHS, you need a competent immune system to do so. Some of the kids have low IgG levels and it is thought that they do not mount a sufficient response. While carriage may explain positive throat cultures in some children (with low ASO and antiDNAseB) it is not actually known whether carriage is benign or whether it is rather a lingering long term infection.

 

Thus, the prophylaxis is intended to keep an infection from occuring (or if it does occur that it will be quickly curtailed). The high dose prophylaxis is (in my opinion) to clear intracellular strep or help an immunocompromized child fight an infection. There are also some anti-inflammatory and immuno-moculating properties of macrolides that help all of these items.

 

The exact dosage needed to maintain prophylaxis in children is not really known and seems to vary by weight, immune response and GABHS strain.

 

Long answer, but I hope it helps with your question.

 

Buster

 

for info on titers, read Buster's aug 24 and jan 11 posts: http://www.latitudes.org/forums/index.php?...art=#entry29305 Lots of kids with pandas (on this forum at least!) have low titers (aso/anti-dnase B ). Be a little careful, b/c these titers are not a "blood test for pandas" and if you child happens to be one of the ones with low titers, docs may use that as an excuse to say your child doesn't have pandas. My dd had pandas (2 mo. after FEVER/strep exposure/onset of beh. change ) severe enough to require hosp, with positive cultures (throat/perianal), yet her titers were consistently low (2 and 3 mo after onset of beh. change.)

 

Also, be sure to change toothbrushes/toothpaste a few days into abs. Also, give each kid their own toothpaste tube.

 

Also, check out www.pandasnetwork.org

[DebC]

We live in the Dallas area. Our pediatrician is the one listed on Beth Maloney's site who diagnosed our daughter. However, as I had her specify, he only diagnoses. Our neurologist confirmed PANDAS (titers then weren't high) but since our daughter had no physical symptoms, he doesn't treat further. He would do more if there were tics but she only has the OCD portion. Our psychologist is great at working with her using CBT but this only goes so far. I am getting ready to send very long 4 page letters to our pediatrician and ENT giving them consult information of doctors who are currently treating PANDAS and pleading with them to become doctors who treat the illness and not just diagnose.

 

We do change the toothbrushes after any strep and each child has their own tooth paste which is also changed after strep. I have allergies and so my throat is always sore or scratchy. Therefore, anytime there is strep, I'm tested as well.

 

At this point, I'm not sure how to proceed. I'm wondering if I need to hop on a plane to go elsewhere to be treated. My husband doesn't want our daughter on long term antibiotics, however, isn't this the most proven form of treatment? If this is the mode of treatment, how long are your doctors recommending your children be on the antibiotics and what are the long term effects?

[sf_mom]

ESR & CRP: Used to determine Rheumatic Fever

 

Lymphocyte subset panel: To see if they are fighting an underlying infection

 

STREP PNEUMOCOCCAL ANTIBODY TITER: To determine if they can mount a response to S pneumonia... deficiencies found in many Pandas Children

 

IgG Subclasses: Determine if there is an underlying immune deficiency

 

CaM Kinase - Madeleine Cunningham: Protein created in blood will help determine if they fall in PANDAs range 'helps to convince Dr's'

[lss]

We live in the Dallas area. Our pediatrician is the one listed on Beth Maloney's site who diagnosed our daughter. However, as I had her specify, he only diagnoses. Our neurologist confirmed PANDAS (titers then weren't high) but since our daughter had no physical symptoms, he doesn't treat further. He would do more if there were tics but she only has the OCD portion. Our psychologist is great at working with her using CBT but this only goes so far. I am getting ready to send very long 4 page letters to our pediatrician and ENT giving them consult information of doctors who are currently treating PANDAS and pleading with them to become doctors who treat the illness and not just diagnose.

 

We do change the toothbrushes after any strep and each child has their own tooth paste which is also changed after strep. I have allergies and so my throat is always sore or scratchy. Therefore, anytime there is strep, I'm tested as well.

 

At this point, I'm not sure how to proceed. I'm wondering if I need to hop on a plane to go elsewhere to be treated. My husband doesn't want our daughter on long term antibiotics, however, isn't this the most proven form of treatment? If this is the mode of treatment, how long are your doctors recommending your children be on the antibiotics and what are the long term effects?

 

 

Hi Deb,

 

I think we spoke on the phone regarding Dr. Goebel. You could always try asking him to speak with Dr. K in Chicago, maybe this would change his mind. Otherwise, you can always call Dr. Chiniwala. She prescribes the antibiotics for me in Dallas. I did ask Dr. Cunningham about drs here in the Dallas area, and the only one that has contacted her is Dr. Rao and he follows her recommendations. She also told me she would recommend a dr. in OK, if you want to travel there.

 

There is also another Dr. in Houston who is treating Pandas, Dr. Collard Suite 900, 7400 Fannin Street, Houston - (713) 795-9500

 

 

Linda

[dcmom]

Hi Deb c-

 

Sorry you are going through this

 

My daughter needed 30 days of daily zithromax to recover from her first episode. Ten days of antibiotics is just usually not enough. You need to find a doc willing to prescribe. We do prophylactic antibiotics, and I do feel that is very important for pandas kids- but regardless of what you decide about that you have to take care of what is going on now, and then decide what to do about the long term.

 

Hopefully someone on the site will suggest someone else in your area who will prescribe a longer term of antibiotics to start.

 

Frankly, I wouldn't even bother with the titers test. All that is really good for is to (not reliably) document a recent strep infection. You know she had that. Beyond this, I feel it can only be ammunition for non believing doctors.

 

Its interesting your doc doesn't treat. My doc actually thinks the ocd is more debilitating and concerning than the tics....

 

Hang in there, and stay on the forum- you will get great advice here....

[lss]

We live in the Dallas area. Our pediatrician is the one listed on Beth Maloney's site who diagnosed our daughter. However, as I had her specify, he only diagnoses. Our neurologist confirmed PANDAS (titers then weren't high) but since our daughter had no physical symptoms, he doesn't treat further. He would do more if there were tics but she only has the OCD portion. Our psychologist is great at working with her using CBT but this only goes so far. I am getting ready to send very long 4 page letters to our pediatrician and ENT giving them consult information of doctors who are currently treating PANDAS and pleading with them to become doctors who treat the illness and not just diagnose.

 

We do change the toothbrushes after any strep and each child has their own tooth paste which is also changed after strep. I have allergies and so my throat is always sore or scratchy. Therefore, anytime there is strep, I'm tested as well.

 

At this point, I'm not sure how to proceed. I'm wondering if I need to hop on a plane to go elsewhere to be treated. My husband doesn't want our daughter on long term antibiotics, however, isn't this the most proven form of treatment? If this is the mode of treatment, how long are your doctors recommending your children be on the antibiotics and what are the long term effects?

 

 

Deb

 

Forgot to mention one thing about Dr.Chiniwala, she doesn't look just for the titers in order to give you antibiotics, based on my son's experience, she knows not to look at just those numbers, but based on other symptoms.

 

Linda

[dcmom]

Just to clarify: the s. pneumococcal antibody titers do not measure one's ability to fight GABHS (strep throat bacteria). S pneumonia is the bacteria that causes pneumonia and some ear infections. There is no test that I am aware of to determine if one can mount a proper immunological response to GABHS.

[sf_mom]

Thanks dcmom... tired tonight and edited accordingly in above post.

 

Just to clarify: the s. pneumococcal antibody titers do not measure one's ability to fight GABHS (strep throat bacteria). S pneumonia is the bacteria that causes pneumonia and some ear infections. There is no test that I am aware of to determine if one can mount a proper immunological response to GABHS.

[Suzan]

Our neurologist also tested magnesium, HHV6 and other herpes titers, biotin, biotinaise (sp?), B12. So far everything is coming back normal except the HHV6 was elevated. This indicates she's had the virus. Some kids don't process it and end up with neurological symptoms and there are some docs who think a round of antivirals may help. My dd is having increasing OCD behaviors as well.

 

HUGS!

 

Susan

[thereishope]

Deb,

 

Do you think if you bring up the idea of a steroid burst to your ped, they would consider it? Perhaps try giving Ibruprofen for a few days and note whether her behaviors improve at all while taking the Ibruprofen. If they do, at least that is something to cite to the ped when asking for prednisone as a sort of "proof" that the inflammation needs to be brought down.

[EAMom]

the advil might be better to try to start since it is less likely to have side effects. Also, for us we noticed a change with advil almost immediately (within 40 min) whereas with some kids (including ours) the time for the steroids to "kick in" took a couple of weeks.