New here have labs and ?

[momx3]

HI Everyone

New here, I have my son's labs any help or opinions would be appreciated.Just posting one that have high or abnormal all others are in range.

 

Analyte Result value Ref range abnormal

ASO AB 289 <150 H

 

Streptozme screen Positive negative A

 

Streptozme titer 200 100 H

Edited January 28, 2011 by momx3

[SarahJane]

I don't really understand what you're asking & don't understand the labs. I see this is your first post. Has you son had strep and is showing behavior changes? Or did you do blood tests because no sign of strep except behavior changes? Maybe post some more info and we can help. Welcome to the forum.

[momx3]

I don't really understand what you're asking & don't understand the labs. I see this is your first post. Has you son had strep and is showing behavior changes? Or did you do blood tests because no sign of strep except behavior changes? Maybe post some more info and we can help. Welcome to the forum.

 

Hi Sorry new to forums and possible Pandas .My son got strep a few mopnths backs and I noticed he was crankier then normal ,I thought pre puberty since he is 11. He then started washing his hands constantly.He got worse and I started researching OCD on the net.I went to his Ped and she did some research and had him tested for strep titers ,his immune system and Lyme and microplasm.

(The results didnt copy correctly after pasting and cutting on my orginal post ). She doesnt think he has Pandas but I see that his ASO are 289 where anything above 150 is high . His Streptozme screen is postive. His streptozme titer is 200 and ref range is less then 100 ,so high.His DnaseB ab is 184 ref range is 187 so not high .This is where I believe she doesnt think it is Pandas. He is on antibiotic Augmentin ,I really do not see a change in his behavior or OCD.I am just very confused and now need to find a doctor that can help.I see I am near 2 .(within 3 hours).

He has terrible thoughts and is OCD about germs and people with foreign accents .He calls it germs but to me it sounds more like poison ,terrorist attacks.His anxiety is pretty scary. He has to be home schooled.

Thanks sorry my first post was not clear.

[amyjoy]

where do you live?

[Fixit]

This all started 2-3 months post strep infection?..yes sounds like pandas to me...

it's the anti bodies that create pandas not the strep itself...

 

though for my son..with each new episode...(after the first 2, where the strep came in(i didn't know it was strep, just thought he was sick) and then the tics would start 2 weeks later..not knowing he had strep till i would take him in, asking why is he ticcing..(answer=not sure but he does have strep)) and he would remit with abx...

after that...he would not present with illness, running, playing...he would tic, i would take him in to find it was strep again...

just found one note book....

ticcing...take him in, not strep.....still ticcing take him in again about 10-14 days later...STREP!

 

what dose is your son on? how much does he weigh?...you may need to raise dosage...

you may need to try different abx's...different kids do better on different abx's

[butterflymom]

=

Edited February 3, 2016 by tampicc

[Phasmid]

Sounds VERY suspicious to me! Do you know how to access the doc list here? Look in the pinned threads. Scroll through posts for your area. Where are you? People here are really great about sharing who they go to. I know you're confused now, but just relax and know that you are in THE BEST PLACE YOU CAN BE for information! Folks here are AMAZING! What you need to know now is that your pediatrician may not be able to help much, and you may need to see a PANDAS specialist to get treatment. Antibiotics can work quickly, but some take longer than others.

 

 

[colleenrn]

The strep titers are elevated. You can have PANDAS and have normal titers, however, so you cannot rule it out based on titers.

 

How much does he weigh and what is the dose of Augmentin. One important thing about Augmentin is that it must be given every 12 hours or every 8 hours to be effective. Based on what you have described, it sounds like it could be PANDAS. Adding ibuprofen in the short term can help b/c it decreases the inflammation in the brain.

Colleen

[SarahJane]

Hello again! It sounds suspicious to me too. It also sounds like your dr was thinking PANDAS since she ran the strep, MP & Lyme testing. All 3 of these have been implicated as possible PANDAS/PITANDS triggers, so it seems like she did do some recent reading. Hmmmm. As you read thru PANDAS symptoms, have you seen anything other than OCD? Any eparation anxiety? Age regression? Rages? Sleep issues? Hyperactivity? Etc.... Don't be fooled by the "sudden onset" criteria because sometimes it does take a little while to show up after strep. Also, while onset at 11 isn't necessarily uncommon per se, you may consider if you saw anything happen at earlier ages with illness or abx. You've already said he has to be homeschooled...that's due to all this going on? Was he going to school prior to this? I would recommend at least talking to or seeing one of the experts, & it sounds like you're close to 2 of them. You may need to find another local doctor if you can't get them on board. (Many of us have had to make a change, & if you give your general location, another parent may be able to recommend a local dr.) The quicker you get right treatment the better, & the right treatment can be different for the kids. Usually abx are tried first (and you may have work with diff meds/dosages), a steroid burst can be done to help dx (not long-term solution), and IVIG is also a treatment. If you found the forum, you've probably seen the other main PANDAS sites (pandasnetwork.org, savingsammy.net, pandasfoundation.org, pandasresourcenetwork.com, webpediatrics.com). I also recommend the book Saving Sammy by Beth Maloney.

 

Good luck seeking answers and treatment.

[momx3]

I would appreciate any info on DR T and DR B in CT. Please send them in a private message . I think I am going to have to take him to one of these Dr's.They are both 3-4 hours away .I live on Long Island NY if anyone know any other doctors there please let me know .WHen I look back I think my son has had this before but without the OCD . His OCD is very bad that is why he is being home schooled . He has regression and trantrums and major anxiety. The ped has put him on antibiotics Augemtin 600 2times a day ..They also said I should see a psy for meds .Thanks for all the suggestions .As you can see this is all so new to me.

Edited January 31, 2011 by momx3

[airial95]

I'm so sorry you had to find us here - but I hope that you can get some answers you're looking for.

 

I just want to add that my son was clinically dx with PANDAS last year by our pediatrician - however, every round of blood work we have ever done on him has been totally NORMAL! In fact, the specialist told us that one of the immune markers (don't remember which one) was the best she'd ever seen - meaning he's not prone to any sort of skin infections or issues. We both laughed at this because my son's entire PANDAS journey started with an impetigo infection (strep of the skin!)

 

So what's my point? The blood work is only one piece of the puzzle. Our Dr. confirmed PANDAS simply by seeing how positively he responded to abx. But finding the right abx and dosage for your child/strain of strep is critical, and may take some trial an error.

 

My biggest suggestion - in addition to those already stated above - keep a detailed journal of symptoms. Write everything down - no matter how trivial. This can help you identify patterns/improvements etc... that you can't always see in the moment. This helped our doctor to figure out treatment options, and helped us when we started to meet with new doctors/therapists/teachers at school because it gave us specifics that we may have forgotten (or softened) over time.

 

Another parent on here - Buster - came up with a good methodology for tracking symptoms - I think the original thread might be pinned in the helpful info thread at the top of the forums. I've taken his methodology and created an xcel spreadsheet that tracks and graphs. If you PM me your email address - I'm more than happy to share it.

 

Good luck!

[thereishope]

Welcome. How long has your son been on Augmentin? You should also have all family members tested for strep even if they do not have symptoms. This is how we found ot our two non-PANDAS kids are asymptomatic. PANDAS kids can react to exposure as well. As if you have someone with strep in the house, you can get reinfected.

 

For each child, the right antibiotic varies. If after a certain amount of time the Augmentin isn't doing anything, you can try another like Zithromax. You also want to keep the immune system calm by avoiding any allergens and thinking hard before administering any vaccinations right now.