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New Parents: Advice From the Trenches

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Thank you surfmom for this advice. There are plenty of newer faces on the forum these days and an overview from a mother who has been through it all is invaluable.


DD's reactivity to her infections has changed my life. I am not the same person I was before we started this journey.


I have had to be stronger than I ever thought I could be, have had to stand up against medical authority, spouse and family because I knew in my heart that they were wrong about the reasons for her behaviours.


Our treatment path has diverged from yours, but DD13 has also found healing.


It seems like we all need to find our own way; that not one of our children has an illness with the same underlying cause (infections, genetic variations, autoimmune responses) and that each child requires individualized treatment that can only be established through trial and error.


Thanks for the update.

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  • 3 weeks later...

Laurensmom - Yes, what you said, about the social isolation, is one of the most difficult aspects to deal with. Other, more "outward" disorders get far more sympathy and compassion from everyone, even strangers, than the child whose illness is manifest by appearing to be an undisciplined brat.


What I **try** to take away from all this is that I have REALLY learned compassion and patience with other people, especially other children. I used to have a real opinion about children's behavior (the same way that some people now have toward my own :( ). But we are learning that there is often SO MUCH more going on behind the scenes (in the brain) that we can't see.

You never know when someone is truly suffering.


How much better to offer a word of support and kindness. I tell DD that her "issues" as we call them, will help her to one day be a more compassionate individual too.

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  • 2 weeks later...

Beautifully said, Surfmom. For all of you just beginning this journey, kids do get better. Mine did. Completely, 100% better. He's now college, has lots of friends, is the leader of student groups, earns high grades-- the works. This same kid was so anxious just a few years ago that he couldn't go to high school full time.


All I can add in the way of advice (because Sufmom has covered it all) is try not to buy any snake oil. There are doctors out there who are capitalizing on parent desperation. To the extent you possibly can, see doctors who have hospital affiliations, admitting privileges at teaching hospitals and a network of other practitioners with whom they can collaborate. The doctors who belong to the PANDAS Physician's Network are the the best of the best. The are also the most current about advances in treatment. Use them, if only for referrals. https://www.pandasppn.org/


Also, this is apparently not an illness that one outgrows. We thought our child was healed and we sent him off to college drug free. It took only three weeks for him to catch strep and another three until he woke up one morning a neurological mess. Not only was he in a state of complete panic, he couldn't think straight or read. Thankfully, antibiotics turned it this around quickly (within 48 hours) and he was able to continue with his studies. I tell you this story because prophylactic antibiotic treatment is necessary for some children. Per Susan Swedo, my so will remain on them until he finishes school. When a child presents in accordance with the Rheumatic Fever model, the treatment protocols are identical. And just as people don't outgrow Rheumatic Fever, they don't outgrow PANDAS. Strep can induce an encephalopic at any age.

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Hey Surfmom, so great to read your post tonight--you have captured my own feelings in numerous points. Isn't it amazing how similar our experiences are, this never ceases to amaze me...as it is all too bizaare to make up! Thanks for your reflections--well said!


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