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What does recovery look like?


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We are going on 10 years, six of those years she was misdiagnosed so went untreated. She was so ill during that time she could barely leave the house, and missed probably four years of schooling. It has been a steady improvement with some setbacks when she developes mycoplasma or small setbacks if exposed to other viruses. I can say she is 90% better than she was six years ago. She has been on two antibiotics for four years now with symptom returning when she is weaned off. We have been trying to get IVIG for two years now hoping it will return her to 100%. She clearly has an autoimmune response to viruses, but has no symptoms in between any more, and her life is very normal in between setbacks. When she flares, steroids bring her right back. We never thought she would recover to this point considering how sick she was for so many years, it is quite miraculous. Even if IVIG does not bring her to 100%, it has become very managable. We have been working on methalation issues and immune support through supplements as well. She is very social now and has a lot of friends.

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  • 1 year later...

We are among the lucky ones. When better, my son returns to baseline. He is completely neurotypical-- unusually well behaved, high achieving, and popular. Our story is textbook and encouraging.

 

My son had three distinct PANDAS episodes. The first, at age 5, was such a flash in the pan that it was never treated. After a likely strep infection (fever and sore throat followed by a rash), my son developed germaphobia OCD and separation anxiety. Nothing serious. He was still able to go to school, but said he missed me during the day and washed his hands so often that they became very chapped. The behavior came out of nowhere and then disappeared completely a few months later with no treatment. I distinctly remember him telling me that he was no longer afraid of germs. Just like that.

 

The second episode occurred nine years later after a cellulitis infection. Contamination OCD and extreme panic attacks that lasted for hours were the hallmark symptoms, although accompanying symptoms included severe regression, short term memory problems, headaches, reduced small motor coordination and fatigue. Psychotropic medications and CBT were tried and abandoned because they didn't work. Once diagnosed with PANDAS, appropriate antibiotics and inflammatory medications were prescribed and symptoms remitted quickly leaving behind impaired executive function and slowed processing speed. It took about six months for these to later symptoms to remit completely

 

The third episode occurred two years later after untreated strep throat. (We thought it was a virus and the sore throat was just swollen glands.) Three weeks later he woke up anxious out of his mind. He also couldn't stop crying and felt pressure in his head. Antibiotics and anti inflammatory medications were prescribed and within 48 hours he was functional. He could once again read and no longer felt like crying. Again, executive function was compromised. For the next four months, he had significant difficulties with concentration, short term and working memory and falling asleep. But he was able to attend school and socialize with friends. Slowly these more minor symptoms remitted.

He is now on prophylactic antibiotics to avoid another strep infection.

 

In its most classic form, this illness gets better.

Edited by mommybee
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So nice to see this thread pop up again! I'm the original poster and I guess I'll just report back that this January/February were much, much, much better than last year. What a difference a year makes. My older son is NOT "cured" and still takes quite the cocktail of nutritional supplements. His PANDAS is still with him, but it is not currently running his life--nor ours.

 

Many thanks to the help and information on this board. In my first post, I asked if this could possibly be PANDAS. Many of you very politely and kindly told me, "DUH YEAH THAT'S PANDAS."

 

That really helped. I got early and fairly decent treatment initially and that made all the difference. Now we are in the hands of pandas specialist.

 

Thank you thank you thank you.

 

Unfortunately, his younger brother recently onset so...this household not out of the woods entirely by any stretch. :(

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Someone here mentioned that "we were never 100% normal..." or something like that. It seems as if there is a subset of children, due to genetics or whatever, that will be susceptible to things like PANDAS, PANS, autism, vaccine damage, aspergers, etc. DD was always high needs, a horrible sleeper, from day 1, had a bad reaction to her 8 week vax (which she appeared to recover from), and was always sensitive to light. But we still considered her within the boundaries of "normal" until that one day when she flipped. So, in essence, a perfect storm was brewing.

 

So it seems that, for those kids, getting "recovered" may not ever mean that they are like that "perfectly" neurotypical child, but that they are back to the point where they were before they fell off the cliff, maybe more high needs and requiring more attention, but definitely manageable and not interfering with a "normal" life.

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