Advice Needed

[MMT]

Your advice is needed and any guidance would be greatly appreciated. DD6 started showing OCD signs in December. She can still function but is not the same happy child she was just months ago. Constant worry and irrational negative thoughts are taking her over. When researching it, I came across PANDAS. All of the information seemed to fit our situation. DD was sick with a fever the first week of December. Didn't show other signs of strep so when fever finally broke and she got better I didn't think anything of it. A week later, she couldn't stop obsessing over being wet with urine, having clean hands, thinking that she was doing harmful things, etc. Had to wait until 1/9 to see pediatrician about onset of OCD. Luckily the pediatrician was open when I suggested PANDAS. Rapid strep test was negative (although I don't think they got a very good swab). ASO was positive with a titer of 400. AntiDNase-B was 140. Doctor said this ruled out PANDAS. She had prescribed antibiotics and instructed us to go ahead and continue treatment. DD is taking Cephexalin 250 mg 3 times a day. We are on day 8 and there really hasn't been a change in behavior. We have a follow-up appt. in about a week. I guess I'm not sure where to go from here? Do our test results rule out PANDAS? Should I ask for DD to continue on longer course of antibiotics? Stronger dose? We are just starting out on this journey and I hope all of you who are more experienced can help out these worried and confused parents.

[nicklemama]

I'm trying to figure out how a positive titer test rules out PANDAS. I actually believe it's the opposite, it helps to rule it in. You will more than likely need to go see a doctor who knows more about PANDAS.

[cara615]

I agree, the anti dNase-B titres rise after the ASO titres rise so if you had a positive ASO then likely if you test again in a couple of weeks you will have a positive anti D-nase B as well. This would lead one to believe PANDAS is the cause.

 

i would seek doctor more well versed in PANDAS for sure.

[Rachel]

My son saw an immunologist that specializes in PANDAS/PANS. My son has elevated PANDAS antibodies on the Cunningham test. He has been sick for 3 years. He was tested for strep when his illness started but it was negative. PANS is a newer term but it can be caused by other virus and bacterial infections. I would also suggest that you get to someone that specializes in this area. I am new to this illness also but wanted to share this information about PANS. It is very simular to PANDAS, it just has a broader definition of what might cause it. Wishing you the best.

Rachel

[pr40]

if your pedi is open to PANDAS, you are indeed lucky. now the question is how much he/she knows about it and if I were you I would do reseach of the pinned materials on this forum and go to your next meeting with a few printouts concering additional bloodwork.

I would also ask for profiactic abx right away. Augmentin and Zytromax is the combo our kids are on.

so, first step is yto detrmine if there is any lingering infection. after that is done, reasearch is pretty much over and a long slow recovery will begin -- there may just be a question if there is something else going on as well.

that recovery will include, when you child is cabable to benefit from it, CBT. for many, change of diet is either a necessity or a good idea.

[MMT]

Thanks for the replies so far. I'll I've done is worry and research. In my gut I think it is related to her being sick. Everything started shortly there after. While her current behavior is manageable, I fear it becoming worse. I also want my child to be able to be herself. I'm anxious about our next appointment and am trying to gather as much information as possible. We also have an appointment at the psychologists. Do you think that we should push to continue on with the Cephexalin (it's only been 8 days) or should we try switching to Augmentin?

[JoyBop]

I just wanted to let you know that we have a very similar story. My child does not ever have an elevated anti d nase, even with the rise and fall if ASO and positive cultures. It's very important to get a good swab, and a proper overnight culture should be sent out if the rapid is negative.

My child was and still is on Keflex. It took a good 14 days to see improvement. Hang in there!! I think you are in the right track! You are very fortunate that the doc ordered the ASO. That is evidence of a recent/current infection even without the d nase. My child's d nase never changes even from one lab to another.

[MMT]

I just wanted to let you know that we have a very similar story. My child does not ever have an elevated anti d nase, even with the rise and fall if ASO and positive cultures. It's very important to get a good swab, and a proper overnight culture should be sent out if the rapid is negative.

My child was and still is on Keflex. It took a good 14 days to see improvement. Hang in there!! I think you are in the right track! You are very fortunate that the doc ordered the ASO. That is evidence of a recent/current infection even without the d nase. My child's d nase never changes even from one lab to another.

Would you mind sharing how old your child is and what strength Keflex they are on? Also how long have they been on it? Thanks for the reply. It's always nice to know that you're not alone.

[Dedee]

Here is my suggestion.....You have a ped that is at least opent to the idea. You have a child that you know exactly when this started. The NIMH says these are the critera. Dr. Sue Swedo and her team at the NIMH are more than happy to discuss these criteria and treatment with physicians. All you have to do is e-mail her and give the information. Include physicians name and phone number, and the background on your daughter. If Dr. Swedo can't contact your ped personally then one of her team members will.

 

I know a couple of people who have done this and it really works out well. Just goe to the NIMH website and the information is there. They highly encourage this exchange in order to educate physicians and help kids.

 

Other wise you need to immediately find a PANDAS / PANS specialist and make an appointment. You need a full lab work up and appropriate antibiotics. You need someone who is experienced and knows how to deal with this type of situation.

 

Dedee

[LNN]

You might find this resource helpful http://latitudes.org/store/should-you-consider-pandas-ebook/

 

As a very, very loose guide, you need two things in order to see improvement - you must eradicate the infection and you must give the body time to stop the cascading cycle of inflammation. Sometimes you see immediate results and other times, it can take several weeks of the right antibiotic. It depends on whether there's chronic strep (hiding in the crevices of tonsils, in sinuses, adenoids) or if a bacterial infection that isn't sensitive/vulnerable to the particular antibiotic you're using.

 

If strep is your trigger and you get on the right antibiotic, I'd expect to see improvement (maybe not complete remission) within 6 weeks. If you don't see that, consider changing antibiotics or screening for other triggers such as mycoplasma pneumonia, lyme... and make sure you give @50billion CFUs of a good probiotic while on antibiotics. Take the probiotic at least 2-3 hrs away from the antibiotic (preferably on an empty stomach so that stomach acids aren't stirred up, which tend to kill more of the probiotics before they have a chance to reach the GI tract). So if the last dose of antibiotic is 6pm, give the probiotic at bedtime after 8. Theralac, Kirkman's Bifido Complex and CP-1 are all good probiotic blends that come in the higher doses you need.

[JoyBop]

Sure. My son is 80lbs, 8 yrs old and is on 500 mg Keflex BiD.

Some kids just don't make the anti d nase. No one knows if that's an immunologic deficiency or a normal finding. I throw out there that my healthy child (pandas but seldom Sick with bugs) also was deficient on protective titers on all of the pnuemo strep titres he received vaccine for. I'm not sure if there is a connection but you could always ask for the bloodwork. My follow up is t til feb but I'm guessing they will want to revs dinars him and test again.

Edited January 18, 2014 by joybop

[MMT]

Thank you for all of the advice. I emailed Dr. Murphy and will be calling on Monday. Taking it one day at a time.

[qannie47]

Pandas reactions can occur several days to weeks after a strep infection. Your aso seems to point to strep involved in some way....The body, from what I understand, can have strep and sometimes cure itself, hence the negative strep, buy positive aso's. Your aso's are signifigant in my opinion. I assume the 24 hour culture came back neg? How about the sinus, ear? It seems to me that strep is involved obviously. Your sudden onset is also highly suspicious. Stay on this path of speculation. Early dx of Pandas is important.