Frustrated by exacerbation of tics

[concerned mom]

I thought we were out of the woods. My son (11 years old) was doing very well for over 6 months with only occasional and mild tics. In late February I noticed the tics were more frequent. They have continued to increase in frequency and the movements are becoming more exagerrated and severe. He whips his neck around so much that I am worried that he will injure his neck! He does it 2-5 times an hour most waking hours. He has been on antibiotics for 18 months! His last blood test was in January and his strep titers were still abnormally high but better than his previous test a year earlier. How can he still be fighting a strep infection after all of this time? Is it just living in him?

 

He is very aware of the recent change and embarassed by his tics. I contacted his neurologist and she gave me some suggestions for treating the tics themselves such as ibuprofen or cognative behavioral therapy. She also said we might want to consider resperdal (which scares me). I have sent her a follow up email asking if we should be looking into other methods of treating the PANDAS itself such as a change in antibiotics, tonsilectomy or IVIG or plasmapheresis. Am I over reacting? What do all of you suggest I do?

[blakes_mom]

My son has also been struggling with tics for the past 6 months. We have been on several antibiotics with improvement,but the tics kept coming back after about 3-4 weeks on an antibiotic. The immunologist that we have been seeing for pandas recommended a tonisillectomy and adenoidectomy,his tonsils were big and cryptic so this was an easy decision. My immunologist has been talking alot about biofilms where the strep bacteria is able to hide and has a shell around it,so it is difficult to get rid of it with antibiotics.Well any way on Tuesday he had his surgery and the results have been amazing.The tics 2 days after surgery are 98 % gone.He also started Augmentin after surgery so that could also be helping too. The ENT doctor that did the surgery who also is familiar with pandas told me that the adenoids looked like they had a film on them and he believed this could be the source of my sons infection. I hope and pray that this will finally be the answer for us. Good luck with your son and let me know if I can help in any way.

[LNN]

I had a very long lunch yesterday with a forum mom who lives nearby. We've both been on similar treasure hunts looking for the triggers for our kids, both of our sons have had tics. We've looked at Pandas, lyme, mold, detox, metals, yeast, mineral deficiencies...

What we've found is that several of these things probably play(ed) a role and it's been a matter of whittling away.

 

For my son, a T&A and getting rid of a chronic infection was a big step forward. Pex helped as well. But we also went thru an aggressive period of lyme treatment 2 years later and saw a burst of tics when he couldn't clear die-off toxins quickly enough. So tics may be one of the symptoms that show your son is struggling but the trigger for that struggle may not be one single thing. Instead it just may be his body's way of saying something's not right.

 

But I agree that biofilms could be a factor. I know the term sounds "out there" but it's a very up and up and real thing. Here's a long article on it and how it plays a role in chronic illness: http://bacteriality.com/2008/05/26/biofilm/

 

It may be that your son needs to be on a different abx or a combo of abx and/or you may need to look at how his body handles toxins. This article also has a lot to offer http://www.publichealthalert.org/Articles/scottforsgren/biotoxin%20pathway.html

Biotoxins, and the inflammatory responses which they initiate, may be at the center of the illness.

 

If a person is genetically susceptible to a biotoxin-associated illness, it is likely the case that the biotoxins themselves, rather than Lyme infection or mold exposure, are causing many of the symptoms being experienced. Even further, it is plausible to suggest that infection could be cleared, or the exposure entirely removed, and yet the remaining symptoms may be almost entirely due to circulating biotoxins. It comes down to a genetic predisposition which results in the body’s inability to remove these biotoxins. Long after the initial exposure or infection is gone, the toxins may live on.

 

If Respiradol scares you (and I share your feelings), I'd continue to hunt down chronic infection and/or look at inflammation and detox. If your doctor only wants to use a psychotropic then it may be time to find a doctor who's more in tune with the approach you want to take. There are lots of options.

[concerned mom]

Thank you both so much! The biofilms stuff is very interesting, but hard to understand. I will study it more because it sounds like it could explain how ds's body still is fighting a strep infection after 18 mos on antibiotics.

 

I followed up with the neurologist asking if we should consider IVIG or PEX and she said both were out of the question because they were expensive and had risks of their own. She did say we could talk to an ENT specialist about a tonsillectomy. We'll follow up in that direction and hope for the best.

 

I hope your children recover soon too! Blakesmom, are you continuing to see improvement following your child's tonsillectomy? I sure hope so! My thoughts and prayers are with all of you!

[patric]

Hi.

I can really empathize with you as my son also had debilitating vocal and motor tics which only disappeared with IVIg. It absolutely transformed his and our lives! He no longer tics, has separation anxiety, rages etc. however,the tics were the most debilitating of all of his symptoms.

 

Yes, IVIg is expensive, but for us the benefits far outweighed the risks as he was no longer having the quality of life we had hoped for him.

Now he is a happy, outgoing 8 year old boy. We could not have said this just one year ago before the ivig. His tics now only occur mildly after an infection but we are able to treat it and he is back to normal with no tics. I would say he is 95 percent improved!

Oh, and we also had many doctors try and dissuade us and scare us about doing the ivig, and we too felt fearful of it. However I knew in my heart that life could be better for my son and our family. It was heartbreaking to watch him struggle with the loud vocal tics and very pronounced motor tics. The ivig was the single best treatment we did for him. It allowed his immune system to "reboot" whereas abx alone stopped being as effective for us. He is now back to his "sunny" personality.

I know it is not an easy decision, and I am sure everyone has different opinions and experiences but I felt compelled to write to you and share what worked for us as I saw a lot of similarities.

I wish you and your family all the best!

[blakes_mom]

Concerned mom, Thanks for asking and yes he is still about 98% tic free after his surgery. He is doing great and looks heallthier than he has for a long time. If this doesnt last I would certainly consider ivig as i feel that it is a safe procedure.

[patric]

Hi Blake's mom,

Thank you for posting about your child's success with the T&A. We are having that done for our ds8 shortly to hopefully prevent some future infections. Did you go thru your regular ped? Ours is not very pandas friendly so not sure he will approve it.

Thanks for any info!

[blakes_mom]

We dont even have a pediatrician,as I cant find one that has even heard of pandas in the midwest. We see a regular family practice physician that is willing to learn about pandas.The immunologist that we see in Omaha suggested he be evaluated by the ENT doctor. Due to chronic elevated strep antibodies,large cryptic tonsils and quite a few strep illnesses when he was young he was approved for the surgery. It sometimes is approved also for snoring and mouth breathing.