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  • pandas-cover-cropped.pngYour Child Has Changed; Should You Consider PANDAS?

    Have you seen our PANDAS eBook?  Our book is a helpful primer in a friendly question & answer format.  This eBook contains useful information to understand the symptoms of PANDAS, how it is diagnosed (including lab tests), the different types of treatments, approaches for prevention, and how to find the help and support that you need.  Your satisfaction is guaranteed. Learn more

JSL25

Desperate for help in PA

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My 3yo DD started with an explosion of tics about 3 mos. ago. With the tics, we've also seen severe stuttering come and go, night wakings, wetting and spoiling accidents and massive tantrums and mood changes. She's become very afraid of loud noises, including the toilet flushing. We have seen three neurologists at CHOP, an infectious diseases doc at DuPont and her reg ped countless times. She's had extensive blood work (Lyme included), EEG and an MRI of her brain. All normal. We discovered that she did have strep after the tics began and we have no idea how long she had it because she had no typical symptoms. Doc gave her abx for strep and mood and tics drastically improved. After 14 days on abx were over, it all came back. I begged neuro for 30 days of Augmentin and she agreed to try (with the disclaimer that she didn't really believe in PANDAS). 14 days into the augmentin and DD was 99% back to normal. Now the 30 days are over and tics and behavior issues are back worse than ever. A new very severe tic has shown up within 5 days of stopping abx. Neuro has thrown up her hands and doesn't seem to know what else to do. I'm totally panicking and feel helpless. Any suggestions of who to see? I'm near Philly.

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Confirmed strep and response to abx??? Sounds like you already know what to do.... Take her to a pans/pandas doctor and get her back on abx. I'm sorry you're dealing with this- it's incredibly difficult :( we are on year 3 of treatment this month and its been a horrible roller coaster, but there is hope and help if you look in the right places. Best wishes for a quick recovery.

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I'm so sorry your family is struggling. That definitely sounds like PANDAS. The next step might be finding a doctor that can get you back on abx for the time being. Have you checked Pandas Network? Looks like there are a few providers in your area. You will likely have to travel to get the treatment your DD needs, but having a pediatrician or other doc who at least believes in PANDAS and can prescribe antibiotics can keep her stable in the meantime. She is so lucky that you have caught it early. I have had PANDAS since age two (I'm 15 now) and just got diagnosed a few months ago.

Keep fighting, and don't let anyone tell you it's just psychiatric. You know your child best.

Something to keep in mind- the tests most doctors run for Lyme (i.e. Western blot) are largely innacurate, so you may find yourself dealing with Lyme in the future.

Best of luck to you + your family. Be sure to keep us updated.

Elise

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The neurologist might be assuming that you just need to use antibiotics in the usual way for an infection, i.e. give them for a short time and the infection is then dead and stays dead. Have you tried to get it across to her that in PANDAS cases you often need to continue the antibiotics long-term for some reason (like months or a year), as with rheumatic fever, so just carrying on with the antibiotics for the moment might be all she needs to do? (Did you know that yourself?) Or is it that you've told her that but she doesn't believe you?

 

Have you read a book called "Saving Sammy"? You might show her that, or the relevant bits of it, it discusses that.

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Thanks for your replies. Our neuro and our ped are hesistant to give more than 30 days of the abx. Neither is well-versed in PANDAS and I'm having trouble finding a PANDAS doc in reasonable driving distance that won't use all of my savings and that can see us sooner than 3 months.

 

Although the Augmentin helped my daughter TREMENDOUSLY, it almost seemed to become less effective around day 25. Does anyone have any thoughts on that?

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I forgot to mention in my last post that both doctors said that CHOP could audit them if they gave out too many abx; therefore, they were hesistant to do it.

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