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Confused mom in maryland - need advice


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I'm new here, not sure what to do at this point. My always anxious 4.5 year old has suddenly developed a lot of ocd type behaviors and compulsions. He has had some transient tics along with some ocd type tendencies, but this is a real uptick in symptoms. He is so young, it's hard for me to believe this is just regular ocd starting so young.

 

I have been reading about Pandas, and I would like to rule it out but don't even know how to go about doing that. He has never had strep, and is generally a healthy kid. Pediatrician does not believe in pandas and was against testing for strep or strep titers when I brought it up.

 

Should I be looking for another dr to test him? Should I just treat it like regular ocd? We plan to start cbt soon, although I don't know if that will even help on a child so young.

 

Looking for any resources in the central maryland area...

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I would find a different doctor. Dr. Baig in Edgewater is knowledgeable about PANDAS. He does not diagnose it without evidence I think (not sure if you are concerned about that). We saw him recently when our pediatrician did not want to do anything because throat swab was negative. Dr. Baig ordered blood titers and antibodies were very elevated, he then prescribed antibiotics. CBT can also help, whether it is PANDAS or not. My son got CBT when he was in Kindergarten (and before I knew it was PANDAS) and it helped him. Good luck!

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I had doubts as well when I brought my daughter to Dr L. We went though my daughters history and towards the end I asked if she thought she had PANDAS. In hindsight it was quite clear to me, but at the time I was suspect. A clinical diagnosis seemed so subjective - this is the person who will be making money off the patient, right? But her positive response to antibiotics and then steroids was proof enough. We also did the Cunningham panel for confirmation.

 

As ejh mentioned, be careful though with many doctors as some will perform a strep swab and blood work and if numbers are in range, they will dismiss PANDAS. Also, as many others here have advised, begin testing for other active infections like Lyme, mycoplasma etc.

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If your child doesn't have strep, I would cast the net far and wide for other infections. My son never had strep that I knew of. Never tested positive on culture for strep and never had titers. We messed around treating PANDAS as if he had strep. He just couldn't get completely better. I took him to see another doctor and he was tested for lyme and found to be positive for lyme and coinfections. Please know that strep is not the only infection that will trigger PANS. Lyme, coinfections of lyme, mycoplasma, flu, pneumonia, HHV6, EBV and other infections are all capable of triggering PANS. I lost two years treating PANDAS when we should have been looking for and treating what turned out to be lyme.

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Our story is very similar to Nicklemama's and I agree with her recommendation. On top of most of the infections she listed, we were also dealing with mold, heavy metals and methylation issues. After 5 years working with integrative Lyme doctors, our ds15 is doing well and off antibiotics.

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Thanks everyone. Rapid strep today was negative, they're sending it out.

 

Dr. L has next available apt in March. Hoping we'll be magically cured by then.

 

I'm thinking of taking him to an integrative md, and seeing if they have any insights.

 

It's just very hard to pick apart whether this seems like pandas or just early onset ocd.

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"It's just very hard to pick apart whether this seems like pandas or just early onset ocd."

 

I think in many kids (possibly all) there's no difference except the doctor's perspective. A "regular" doctor will look at symptoms and try to suppress or eliminate them, but an integrative or functional medicine doctor will look for the underlying causes, be it infection of any sort, toxicity, allergies, etc. I think it's safe to say that everything has a cause - regular doctors just don't look for it and label the symptoms "OCD" or "anxiety" or "bipolar."

 

Here's a good article that explains the value of looking for the cause of a disorder, using autoimmune disease as an example:

 

http://www.huffingtonpost.com/dr-mark-hyman/is-there-a-cure-for-autoi_b_756937.html

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Another question- how much bloodwork did your kids need to diagnose pandas?

 

I am thinking of taking my son to an integrative dr in the beginning of January. If she offers to do bloodwork, I would want to do it, but if we see dr L in March, would she want new bloodowork? I really want to minimize the trauma in that department...

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Call Dr. L's office and ask to get on the cancellation list. You will get in much earlier than March. As far as bloodwork, if you have what she thinks is necessary done in January she likely won't have you repeat it. She is not huge on bloodwork as far as I can tell. She doesn't run tons of tests like Dr. T. She had us do an ASO, AntiDnase B and throat culture on two pandas kids and their brother to be sure he was not a carrier. That is it.

 

Dr. L will diagnose PANDAS based on history as well, realizing that some kids don't ever raise a strep titer.

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