Non-stop tics with steroid burst

[rhyanen]

Hi everyone. My son's immunologist just prescribed 50mg prednisone for 5 days to take down inflammation. 2 days in, his verbal tics have increased to where they have become incessant. He has also started a new tic where he violently shakes his head back and forth all while having the verbal tics. Is this a normal response to steroids? This is his first steroid treatment. Before he just took Nsaids for inflammation.

 

Thanks

 

Amy

[LNN]

For my kids, even the one who had tics, steroids were a huge relief (tho it didn't do much for the tics one way or the other). Some parents in the Tourette's community say that steroids for their non-pandas kids can make tics worse. Some kids who have Lyme as the trigger could also react unexpectedly to steroids.

 

Since it's only 5 days, I'd probably see it through. But also don't put a disproportionate value on the steroids response. Some people believe that if your child doesn't respond well to steroids, it can't be Pandas. Or it means x or y or z. That's not true. There can be many reasons why a body reacts unexpectedly. His reaction is a clue, but not a clear, absolute proof of anything.

 

Wish I could give you better insight. I might suggest additional blood work - either Igenex labs Lyme test, a viral panel or testing for mycoplasma, which is also a common Pans trigger.

[rhyanen]

Thank you so much for the response. He has been through a host of testing and came back showing mycoplasma, coxsackie, HHV-6, and western blot positive for 3 bands. Immunologist says he does not have Lyme because he does not have 5 bands per CDC guidelines, which I am skeptical about his opinion on that.

 

Currently strep antibodies are negative, but have been positive in the past. He's been suffering through this for a good 14 years. He was diagnosed with high functioning autism at age 3, so for years we just assumed it was that. But we started noticing a pattern with illness, and each time resulting in some serious regression. He is now 16 years old and cannot go to school anymore nor leave the home. His last big exacerbation was it 14 years old, during which time he had a psychotic episode. His cognition has declined by 15 points on his IQ test. He has become severely disabled by this and can barely communicate anything. It's devastating because he was on an honor roll student in between his flare-ups and had several friends. Now he is homebound and a social.

 

I will contact his immunologist and his pediatrician regarding his reaction to the steroid and hopefully they will have some thoughts.

[LNN]

Your immunologist is so seriously wrong on this one. I usually try to temper my responses, especially to someone I don't know. But 3 bands positive on a traditional western blot, combined with the brief description of history - your son needs to be treated for chronic lyme disease. The 5 bands are CDC criteria for Surveillance not for diagnosis.

 

Please read the book Cure Unknown by Pamela Weintraub - and learn about the history and politics of Lyme. You will be outraged by the time you're done - and so motivated to tackle the possibility of Lyme with renewed determination. It's an easy read - not technical or dry. Weintraub is a science writer for Discovery magazine and her family battled Lyme. She does an excellent job explaining why things are the way they are and how to make sense of the path to take.

 

Mycoplasma is a common co-infection of lyme and the fact he has other viruses suggests his immune system is just overwhelmed, so the landscape is ripe for multiple infections to set up house and become entrenched. If you can post the general region of the country you're in, I can offer you some suggestions on finding a lyme literate MD. (LLMD)

[rhyanen]

Thank you! That makes me feel validated because I had been reading alot on Lyme and the confection connection and when he told me that he couldn't have it, I was pretty shocked.

 

The first specislist he saw diagnosed him with PANS/PANDAS. She told us specifically that he needed to see a Lyme specialist based on the results of the Western Blot. Several months prior to that appointment, we were camping in Colorado and my son was feeding wild chipmunks and squirrels. 3 months later, he develops symptoms, can no longer function, or go to school, etc etc. The worst exacerbation we had seen. He had not been diagnosed yet when all this occurred.

 

After coming across information about PANS and Lyme, it prompted us to seek the opinion of a specialist in AZ. But we reside in New Mexico. We've been having to travel to AZ for appointments as New Mexico is not up to date yet regarding autoimmine encephalopathy.

[LNN]

Sorry for the delay. I connected with a friend in NM whose children have Pandas/mold issues but unfortunately, she couldn't recommend anyone local. They travel to CA for their doctor. Your best bet is to contact www.ilads.org for some recommendations or Lymenet http://flash.lymenet.org/scripts/ultimatebb.cgi

and ask under the "seeking doctor" section.

 

Stick with it. Treating the right infection is the key to turning things around.