Eye Blinking Tic - ideas on what is making it worse?

[mdmom]

My DS16 has PANS++ (read my tag line for the rest). Although tics are a hallmark symptom of PANS, this has not been a big issue, as he has only had a subtle eye-blinking tic that has come and gone over the years. This past week the eye blinking in his right eye has gotten so bad and frequent that the muscles around his eye are very sore.

 

The only things I can think that might be affecting him are:

 

He had IVIG#8 2 weeks ago.

He started on sulfasalazine for GI issues 1 week ago.

 

I was worried about him starting the sulfasalazine knowing that he could have a CBS mutation (we haven't tested). Could this make the tic worse?

 

He does take 1800mg of NAC daily. Would increasing NAC help? We use it for liver detox but -I am digging into my memory here - I believe I have read here that others use it for tics.

 

Any ideas?

[rowingmom]

NAC contains a thiol (sulpher) group and could potentially be a problem with a CBS mutation. This along with the added sulfasalazine may have resulted in a methylation blockage. I think some others here with CBS mutations have trouble with NAC.

 

I have always associated an increase in DD's ticcing to be the result of toxin buildup.

Edited September 16, 2013 by rowingmom

[T_Anna]

NAC caused huge issues for DS who is CBS+/-

[lfran]

My son flared horribly on nac. Anyone know if namenda is similar in its biochemistry?

[rowingmom]

Just looked up namenda, and it's chemical structure doesn't appear to have an SH (sulpher, thiol) group.

 

http://dailymed.nlm.nih.gov/dailymed/lookup.cfm?setid=bc6e059d-1951-4fa3-b904-230d4165724d

 

The molecular formula is C12H21N•HCl and the molecular weight is 215.76.

[PowPow]

Does your son has IBD or Crohn's disease?

[mdmom]

No official dx of IBD or Crohn's. GI pain is his main symptom.

 

Theory is that he has an infection that settled in his GI tract (poss. GI lyme). The sulfasalazine is helping with GI pain and he has been eating better since he started taking it. I'm really hoping that it's not making the eye tic worse.

[Chemar]

Over on the TS board, it is remarkable how many kids have eye tics resolve as soon as dairy is removed from their diet...even those who do not test positive for dairy allergies.....and frequently this also settles GI problems.

[mdmom]

Thanks for the ideas. We removed dairy 4 years ago and the GI distress immediately went away and stayed away. The GI distress started after a trip to FL for the Rothman program. If it's not a flare of a old lingering infection, we are suspecting a new infection that he picked up in FL (he waded in the Gulf of Mexico, fished and drank some local water) and we were there pre-IVIG tx knowing he had an immune deficiency.

[LNN]

My DD and I have CBS+ and neither of us do well on NAC. If anything, I'd consider lowering the dose or stopping it, not increasing it. If he's CBS, he shouldn't be on it at all. But even if he's not, between the NAC and the sulfasalazine, you're adding a lot of sulfur. If he's not CBS+, NAC is also a film thinner - it's great for a mucus cough when you're sick. It's like Mucinex. But if he still has lyme, the NAC could be loosening biofilms and causing a flare. So lowering it while a herx passed might be appropriate as well. But it's just speculation without knowing the CBS status.

 

FWIW - I took NAC for 2 months this past winter for a chronic cough, before I knew I was CBS+. It slowly made me depressed and I never suspected it was the NAC until I had my annual physical and my liver enzymes were dramatically raised. My PCP told me to stop the NAC and when we retested a month later, the AST and ALT numbers had dropped from the 80s *above 50 is high) to the 20s. So yes, NAC can be good for the liver - but only if you're not CBS+. In my case, it was bad for my liver.

 

Like Rowingmom, my son gets tics when he's herxing or can't detox quickly enough. I try to add some things for inflammation and increase vitamin C and molybdenum (which can help you break down certain toxins released by yeast and some bacterias), resveratrol (aka Japanese knotwood) is a good antioxidant and anti-inflammatory. But in the end, we mostly have to ride out the storm.

 

Chemar - good point about the dairy. My son doesn't consume much dairy and doesn't have tics except when we attacked an infection, but it's a good reminder to consider all culprits. Sometimes it's a bucket overflowing. On most days, someone can handle xx amount of things. But add one too many burdens and the bucket overflows.

[philamom]

We really never dealt with tics (besides major onset flair) except eye blinking/throat grunting. The eye blinking is rarely noticeable anymore, but I do see an increase right after dd's infusions, and also with strep.

[LexMom]

My DS had an eye tic when he was having a bout of blepharitis. Has he seen an opthamologist?

[lfran]

Thanks rowingmom for the namenda info

[mama2alex]

I just saw your post - I don't know how I missed it! I'm so sorry this is happening. I'm reading the heartfixer document that LLM has posted a few times, and the doctor who wrote it says CBS is "the most important Methyl Cycle defect and is present in 90% of the patients who we have tested." With that kind of rate, it might be safest to assume he has that mutation and limit the sulfur, to the extent possible, until you know for sure. Is there any other medicine you can try for the GI pain?

 

Oh, my heart goes out to him. Please tell him he's in our thoughts.

[Mayzoo]

Take with his doc and see he could have giardia or some other water born infection. Hubby had it, and it was moderate to very intense gut pain that resolved with abx and metronidazole.

 

http://www.cdc.gov/parasites/giardia/

Edited September 18, 2013 by Mayzoo