Pediatric PANDAS/LLMD Dr recommendation in MD

[mtairymomma]

I would appreciate recommendations on a LLMD pediatrician & a PANDAS neurologist in central MD for my 9 year old son.

 

About 1 1/2 years ago my now 9yo son suddenly developed a facial tic -- grimacing, shaking head, etc. It was followed shortly thereafter by some strange behaviors -- licking his fingers, holding his hands in fists and not wanting to get them wet. He has also developed some other sensory issues -- he once loved the beach & pool but now says he likes to swim/surf but doesn't want to touch the sand/water, problems with socks, etc. His once facial tic has now progressed to some very complex, whole body movements, noises, etc. He never had a teacher comment about inattention issues before, but now it is constantly a problem -- putting his head down on his desk, daydreaming, & problems with spatial awareness. He's also developed anxiety which has resulted in insomnia, although he is really tired in the morning & so hard to get up now. He also complains of leg pain when running & has been to the ER twice with excruciating stomach pain. Also, he has had some urinary issues resulting in several accidents at school. All of this is now affecting him socially, where he never had any problems before.

We've taken him to a movement disorder specialist, had him evaluated for ADHD & he was recently diagnosed as severe ADHD & with Aspergers & possible Tourette's. I question the Aspergers dx because the psychologist told me that we should have seen signs of this as a toddler, which we didn't. Last fall, my pediatrician ran a multitude of tests at my request, including lyme's. He told me all was normal. I was concerned about Lyme's because my husband had it (& fortunately caught it quickly) & all of our surrounding neighbors have had at least 1 family member with it.

After learning about PANDAS last week, I asked my doctor to perform strep tests (throat culture & ASO), which I just found out yesterday are negative. I still haven't ruled that out though because one of my other sons had 5 recurrent strep infections starting a few months before my 9 yo started with symptoms. Additionally, this past summer, another son had HSP caused by strep & yet another son had 1 strep infection during this time. And during my pregnancy last summer (with a girl finally!) I too tested positive for strep in their routine testing.

Additionally, yesterday I saw the actual test results from September 2012 while setting up a LabCorp account for the 1st time. For his Lyme Western Blot panel, he tested "present" for Igg P23, Igm P23, & Igg P41. All others were absent, hence the "negative" test per my doctor. Based on my limited research today, I understand that this may be a positive Lyme result despite CDC criteria.

I would like to find a pediatric LLMD & a PANDAS doctor in central MD or even DC/northern VA area to investigate that further. Please PM me with any recommendations. Thanks!

[KaraM]

I am going to PM you with the name of a nurse practioner in DC.

[mdmom]

I will PM you the name of someone in DC.

[rowingmom]

Welcome! I can't help with a specialist suggestion, but it looks like you have come to the proper conclusions and are looking for the appropriate help. You will find lots of support and information on this forum.

 

Please take a look at my signature line. After 2 years of continuous combination abx therapy with an LLMD DD11 is starting to hold her own. Best of everything as you start on this journey.

[mtairymomma]

Thanks for the referrals & encouragement!