Doctor mentioned the possibility of autoimmune

[dswm]

I had originally posted on the Tourette forum, but I think I need some information from this group of moms! Please help me to interpret and understand...

 

My son, age 9, developed some eye rolling tics in March 2015. He had 2-3 days of severe eye rolling, then the symptoms decreased rapidly to the point that he only did it a couple of times per day. Everything else was fine.

 

Mid-November 2015, he took one single breath and developed a intense, brutal coughing tic. He coughed severely until Jan 6, when he finally started having pauses in coughing. Over time, the cough morphed to a strong noise that is kind of like a grunt. He also developed severe anxiety to the point that the anxiety became as disabling as the tic.

 

The only things that kept nagging at me were that during the several weeks of bad tics, he looked physically ill. He was pale, with brownish circles under his eyes. He was exhausted (though admittedly, the tics interfered with sleep.) And, over the past year or so, his temperature has consistently run in the low-99's, but now since this onset is routine temp is 99.7-100.1.

 

Things were going well, then he had a recurrance of severe symptoms last week. Interestingly, it occurred two days after his sister was ill with cold-like symptoms.

 

Strep titers were normal in November. His neurologist recently ordered AE and viral panels.

 

He came back on his labs positive for Epstein Barr Nuclear antibody nearly twice the normal range. His epstein barr viral capsid IGG and IGM were both normal.

 

He had tonsils removed at age 3. He was scoped at the onset of the cough before we knew it was a tic, and his adenoids have grown back and are apparently quite large.

 

His sister was ill with a cold recently, and two days in to her illness was when his recurrence of strong tics started.

 

We are changing medications today to help control the tics. The vocal tics are so severe that he has difficulty eating, gets dizzy from altered breathing, can not focus. We have started to homeschool and he can not even keep up with that when he is ticcing like this. It is completely disabling.

 

Last night on the phone, the doctor did not specifically say PANDAS/PANS, but that is what she was getting at. She said she thought he presented like a kid who had an autoimmune type of reaction. She mentioned steroids and IVIG, though she said IVIG was very hard to find a hospital to get it in---from what I know of her she would want a hospital setting. We will give these new medications a try and then I will further discuss the steroid trial at our next office visit (she prefers to do one thing at a time to avoid confounding the results.) I do really like this doctor---not many others will talk to me at 10pm for 45 minutes (for free!)

 

SO--thoughts? Ideas? Natural interventions? Interpretations of the Epstein Barr? I'm not sure what to wrap my head around first.

[LNN]

First, please know that not all kids produce strep titers and when you test titers, they peak at specific times after an infection. An ASO titer peaks 1-3 weeks after infection onset. Anti-DNase B titers peak 4-6 weeks post infection. So if you don't test at the right time, you can get normal titer results even if you have/had strep.

 

Second, a research paper out of Columbia University was published in December that proves that infections other than strep can trigger the autoimmune response behind Pandas. So EBV, mycoplasma, Lyme, staph, bacterias that cause upper and lower respiratory illness - can all be culprits. So kuddos to you doctor for being willing to consider this.

 

You can try steroids but know that if the infection is still active, any improvements you see probably won't last because the thorn is still in the lion's paw, causing inflammation. They helped my son immensely, but he had undiagnosed Lyme in addition to strep-triggered Pandas so the miracle never lasted. A tonsillectomy/adenoidectomy also helped a lot - especially with his tics, because his tonsils were chronically infected. Ultimately, my son had three triggers for his tics - Pandas, Lyme and mold in his classroom. We had to tackle all three before his tics left but he's been healthy and off all medication since. The tics were because his body couldn't get rid of the toxins that the dying bacteria and fungi were throwing off.

 

My daughter had EBV - l-lysine worked wonders for her. Monolaurin is also a good option.

[nicklemama]

My son never had strep. Titers always normal. Turns out he had Lyme and coinfections. Throw a wide net to figure what infections are causing this so you can choose the right treatment.

[WorriedDADNMOM]

Could not agree more with nicklemamma and LLM.....other infections are huge.....mycoplasma pneumonia is also a major one for us and many.

 

We did do the Monolaurin for quite a while early on..

 

https://www.lauricidin.com/?utm_source=google%2526utm_medium=shopping%2526utm_term=monolaurin%2526utm_content=Lauricidin%2520Product%2520Listing%2526utm_campaign=lauricidin%2520retail&gclid=CNT57-Cj-soCFQctaQodPOILPQ

 

I would say low grade fevers are indicative of some kind of immune issue fighting a chronic infection(s). We had 99.5 infections nearly constantly during tics and tremors and behaviors and mute periods.

 

The flu later that spring with high fever....our kiddo improved a ton after the 103 fever broke after about 1 week. This should be another piece of the puzzle to document and tell your doctor. BTW----do not allow a doc to say dark circles are allergies. For us it was not.....If they don't look well, act well.....then they are not well. After we started our protocol those dark circles went away.

 

I would agree with the use of steroids......if there is any lingering acute or chronic infection.....this can make things worse.

 

Also, look on the Pandas resource network for Pandas/pans friendly docs. This is the route to go for sure.