JoJoMama

Hi, Michigan mom here with a 6 year old daughter that is suspected of having PANDAS. We've been treating tics through diet and supplements for 2 years, and with the recent suggestion of PANDAS, will be working with the Bioenergy Medical Center in Ann Arbor to pursue it further. Is there another place, or an email loop, where I can connect with local families? We're already attending the local TS support group. Thanks.

There is a support group that meets in Ferndale (metro-Detroit area) monthly (except they break for the summer). The next meeting is Sept. 23. My daughter is 6, and PANDAS is a suspect. She has had tics for over 2 years. We are working with Dr. Beurkens, Horizons Medical Center, near Grand Rapids. She is a psychologist and nutritionist, with an integrative approach. Most of the consulting is via phone, and we're on-boarding an integrative medicine practitioner, Dr. Neuenschwander, in Ann Arbor, to work with us. We are exploring many different non-medicated options with Dr. Beurkens, and seeing some improvement with frequency and severity of tics. Dr. Beurkens is awesome - she provides support for the whole family.

I should clarify that I notice an increase in tics in those instances noted above, but her tics also increase at other times, and I can't ascertain why.

Thank you for responding. There was no specific change in behavior when the tics started again in September. I have no idea if it is noteworthy that the start of this latest episode coincides with school starting. She’s a well-adjusted little girl, open to new experiences. I have wondered whether school could have been the catalyst, exposing her to too much stress and new viruses/bugs. But, if she is stressed (absent the teasing), she hides it from me. She has always gone to daycare and been away from home during the day, so attending school isn’t out of the realm of what she knows. As a baby, she had chronic ear infections, but other than cold-like symptoms now and then, she has been pretty healthy. She had an ear infection in January – the first in years – which resulted in an increase in tics, but didn’t seem to last long. She received amoxicillin. Ped mentioned that the strep bacteria can be a big offender with ear infections. She has not had any special tests for strep. I didn’t notice any tic-like behavior before the first episode of tics. My husband does not recall any tics in his children from a prior marriage, although his ex says there were. His oldest son possibly had some as a young boy that was associated with a high temp seizure. I have noticed an increase in her tics when: (1) she is tired, (2) in new environments that ask more of her (examples - a busy farmer’s market, or a birthday party with a lot of commotion), (3) playing games for longer periods of time on the ipad, and (4) when sick. We have not cut out artificial colors, flavors and additives. I have used some “free and clear” products at home on a regular basis, but not all. I also use essential oils occasionally (diffused), including cleaners. I have not noticed a connection between the oils and tics. I also have not diffused oils for several months now, but I do still use a Thieves cleaner occasionally. I will take a renewed look at household products. Should I cut out the Thieves cleaner too? What SHOULD I be cleaning with? Vinegar? Baking soda? We found a mold testing kit at a local home improvement store that we will be buying. I live in a home built in 1942 in Michigan, though, with a basement. The results could be challenging. Look forward to your additional thoughts!

My daughter (5) started exhibiting constant tics in September, when she began public school (pre-k). I’m new to this, and am doing more and more reading over time that make it clear there are other areas I need to investigate. . . . . that “wait and see” (per the neurologist) may not be the best approach here. But, I’m floundering on what to try next. History: She had 2 previous episodes of tics after being ill with cold-like symptoms for a few days, and those tic episodes lasted approx. 3-4 months, when the tics went away completely on their own. Months passed between. The tics began again a week or two after she started school. They have been pretty constant since then, and continue to change, ranging from constant throat clearing (a popular one), gulping, squinting, eye rolling, deep breathing, etc. The severe eye rolling had me concerned that she might be having seizures, so I took her to a neurologist in the fall, who advised the tics are likely developmental. The EEG showed nothing unusual. I had her tested for a handful of environmental allergies (none were present), took her to an ENT (no obvious cause of tics), reduced gluten significantly (no noticeable change), did a run on zyrtec and also allegra (no noticeable change), and epsom salt foot soaks. A week and a half after introducing magnesium, she had a week or so with hardly any tics, but then they started back up (and evolved to deep breaths that involve body movement, and an opening and closing of her mouth). I bought a magnesium spray on Amazon and started using it 2 days ago to up the magnesium. I’ve also purchased dye and paraben-free hand soap, shower products, and laundry soap that I will be introducing shortly. I don’t know what to do next for her. Is it meaningful that the tics waned for a period of time after introducing magnesium? If so, what does it mean? I see mention of blood testing for food allergies, L-carnitine, and other possible remedies, but I simply can't learn fast enough and invite any advice on whether there is an obvious next step from here. She has confided in me that she is being teased at school, and it is hurting her greatly, as well as affecting her self-esteem. I’ve mobilized the school to aim some of their resources at her, but we are just getting ramped up (a speech therapist, social worker, and psychologist will be involved). I feel weighted down by all the reading and self-educating that must be done - it could be a full time job. In the meantime, my child is suffering. Any thoughts or suggestions on what to do (or other areas to read up on)?