tics

[emily]

We are looking for guidance and help. Our 8 year old roughly 3 weeks ago developed tics out of the blue. We went to the doctor and he thought it is PANDAS. We are going through I guess the normal procedure with him wanting to start him on tenex. We are reading books on natural cures and different avenues. A lot of people stating to see enviromentialist doctor. We really are suching for information and the best way to turn and some of the best to see. Does anyone have some good advice from experiences.

[Chemar]

Hi Emily and welcome

 

if the doctor feels this is PANDAS then you should have strep titres done to confirm and if so, it warrants prophylactic antibiotics. I am not too sure why the doctor would want to use Tenex

 

If you start reading through the threads here you will find ones specific to PANDAS that I am sure you will find very informative.

Hopefully some of our members who have more knowledge about PANDAS than I do will be along soon to give you more information

[Sunshine]

Welcome, Emily. You have found a wonderful forum for information and support. Search under ad_ccl for a good report on PANDAS. Ronnas is also very knowledgeable and she has many good threads on here.

 

Find a good doctor/team to help your child. DAN doctors seem to be very helpul, as are some naturopaths, allergists, and pediatricians who have experience with tics. I find it helpul to glean information from this forum, and I bring it to the doctor to see if it's pertinent to my PANDAS son.

 

I have not heard of Tenex for PANDAS. I have found that we try to alleviate stress on my son's immune system. He has made good progress in the past several months, although we are still putting his puzzle together.

 

Good luck. Your son is lucky to have your support!

[ad_ccl]

Hi Emily,

 

I won't recap our experience with PANDAS as I have posted a lot along the way. It is nice to see someone referring that info to a new PANDAS mom, as my intention all along in posting was hoping to help someone in the future.

From my experience with PANDAS, the immune system is the key!!! It seems once your child has PANDAS (and for many, prior to PANDAS) there is/has been a weakened immune system. Lots of ear infections, colds etc at some point. It is important with PANDAS to get the strep titers done and confirm the strep infection, then to go on antibiotics. We made the decision to go on prophylactic antibiotics after many months on full antibiotics. This is still somewhat controversial although the last study I read through the NIMH indicated the kids did better on the prophylactic antibiotics. Many doctors are not keen on this and I had to advocate to get this. ( PLEASE don't forget to also use probiotics - something I had read about by did not do for many months - resulting in intestinal yeast overgrowth) Ultimately, after 2 years we are planning on going off the antibiotics this summer and see how he does. My son still has minor symptoms when his immune system is under attack - from any number of things, pollens, foods, viral illnesses, being overtired, growth spurts. His symptoms are minor and no one would notice them. When he was first sick his symptoms were impossible to miss.

I am not sure how TENEX would help, other than it will deal in theory with the symptom - the tic - but with PANDAS you need to get to the root cause, the immune system. I have not gone down the path of meds, although totally understand why people do. I had many desperate moments during this journey, and did have a bottle of clonidine at one point, which I had asked for but never used.

In brief, the things that have helped my son are - removing all CRT screens - BIG trigger ( LCD is fine) adding in vitamins, doing food allergy testing, then removing wheat, milk, soy, eggs, - wheat has been back in his diet with no problem. We also see an increase in symptoms with allergies so he is currently on Aerius right now, due to pollens, trying to keep away from illness as best we can, taking it slow if minor symptoms appear - he does not have typical illness' - the whole family can have the stomach flu and he will just have an increase in tics. So, we see tics as a sign he needs to slow down. Again, tics have never been as severe as early on in our journey.

 

Hope this is helpful, please feel free to ask any specific questions.

[Ronnas]

A good place to start...

 

http://www.enzymestory.com/PANDAS.html

 

http://intramural.nimh.nih.gov/pdn/recent_publications.htm