Started treatment and not sure if it is working

[colleendonny]

Hi everyone,

My DD started with some PANDAS like symptoms in Ocetober when she was 4. She turned 5 2 weeks ago. We saw Dr. B for the 1st time in December.Her primary symptoms were OCD words and Intrusive thoughts,mouth tics, scratching objects, few days of hair pulling, few days of fear of germs, few days of urinary frequency, separation anxiety at bedtime, hyperactivity and baby talk. It seemd like she was getting better before we saw Dr. B. The only things I noticed before seeing him were still the OCD thoughts and words. So we still started her on Prednisone 15 day burst and 30 days of Augmentin. She still says the "bad words" in her head and still says she has the intrusive thoughts. I'm not even sure the medicine is helping. We go back to see Dr. B on the 10th, so I will bring these things up. I'm starting to wonder if it could be Lyme or a co-infection...

At our 1st appointment, I came down with a sore throat the night before. I don't know my excat numbers, but the office called back to say my strep test was positive. So I need to get retested after 90 days, probably to see if I am a carrier.

 

So I guess my questions are, have you ever noticed improvement in your PANDAS kids without treatment, like my DD? I mean, she was already getting better before treatment. I know her case may be mild and could get worse, but I wold think the OCD thoughts and words would have gone away after some abx?

 

Also, I have a son who is 2 1/2. The past few weeks, I have noticed dilated pupils on him. Not all the time, and not always during tempertantrums. He also has sensitivity to light. But he is very smart and a typical 2 year old boy. Loves to play, is polite and loves to have fum. He has been giving us a tough time at bedtime. He never used to. Now he keeps calling us back into his room. And he'll cry in the middle of the night for us. I'm wondering if something is up with him. But I also feel like if I never had any problems with my 5 year old, I would just think it is typical 2 year old behavior. I may have Dr. B Just send orders for some lab work on him.

[LNN]

You may want to consider charting your child's behavior if you're not already. Pick her Top 5 symptoms and each night, rate each symptom on a 1-10 scale (10 being horrible, 0 being no symptoms). Then total your score each day. You can chart this in excel or even on graph paper and get a day by day picture of her behaviors. The reason I suggest this is that different infections have different life cycles. Lyme has a 4 week cycle where it reproduces every 4th week and you often see a flair of symptoms during this week. Bartonella - a tick borne infection - causes a lot of neuropsych symptoms like OCD and has a life cycle of a few days. So daily charting lets you see patterns over time. Some parents chose to only track on a weekly basis, and that may be a more manageable approach long term, but for now, daily would help you see any trends more easily.

 

One possible explanation for the perceived improvements you saw "on their own" could be a cyclical thing.

 

If you pursue the lyme/bartonella thing, a combo abx approach is often used. We initially tried augmentin+zith which did nothing. We then did bactrim+zith and had great results. So sometimes it takes more than one trial to hit upon the right combo.

[colleendonny]

Thanks LLM.

You always have great advice

Interesting, I didn't know about the tick born illnesses having cycles of a few days each. Sounds like it could fit my DD. And she did have a rash in May that looked a little like a bullseye rash. But when I explained the rash the the pedi's nurse, she said it wasn't. And now I know I definitely should have investigated a bit further.

[LNN]

Bartonella has a life cycle of a few days. Lyme has a life cycle of approx 4 weeks. Not sure what the life cycle is for babesia or myco p. And to complicate it, if you have more than one infection, the cycle you see on a chart could be clear as mud.

 

So it's not a perfect tool. But sometimes you luck out and you can see trends. It also helps because you can make notations on the chart, like when a new medication or supplement is started, or when someone gets sick, etc. So then you can look back over time and get a better overall picture. Doctors also seem to love it because it "quantifies" things.

 

If you opt for lyme testing, you can go the Igenex route for lyme. There's also a new test (not Igenex) that came out in Oct. that can culture spirochetes - so there's no argument about whether you have lyme. See a swimming spirochete in the petri dish - you know you have lyme. None of this "what does this band mean?" stuff. I think it's about $500 and I don't know about insurance coverage. To test for bartonella, Specialty Labs - a division of Quest - has a decent test that's covered by insurance. You don't always have to use the $600 Igenex co-infection test. The lyme board can probably give you additional suggestions.

[nicklemama]

PANDAS is known to be a remitting illness. It will remit on its own w/out treatment, only to have it coming roaring back, even worse. I saw this in my DS. We did not know at the time he had PANDAS. The remissions will get shorter and shorter and the exacerbations will get worse and last longer until they no longer remit.