Please help - Knoxville, TN

[trinnie]

I've posted once before, but didn't get much of a response. I'm trying again. My 8-year-old son was diagnosed with Tourette's in March, although I've been suspecting for some time. He has bouts for months and then it seems to subside and go away almost entirely for a little while - weeks or even a month or so and then it comes back full force and usually with an additional new tic. He recently started up again and now has all his regular tics (throat clearing, sniffing, breathing deeply through his nose, picking at his fingers, coughing) and has now started to occasionally shout out things (not cuss words or nonsense). We've tried to find things in his diet to no avail, because as soon as we think we've hit upon something we discover that's not it either. Then the tics subside and so we can't test anything else. I'm at a loss for what to do now. I'd like to try and find someone who our insurance will take who will direct us in natural ways to help him - via diet, supplements etc (no MEDS) but have struggled with finding anyone in our area that treats this naturally and that our insurance will take. We are relatively new to the area, financially strapped because we still have our old home on the market (1 year later) and so cannnot afford to find someone and pay for it out-of-pocket. I am willing to travel some distance but probably not much more than a couple hours. I also have heard that chiropractic docs can help too, but not sure what they would do and don't want to be in a place with treatment that would require us to be under constant therapy or visits. I'd prefer to find what it is that helps him and go from there on our own. Someone please help! I really am at my wit's end. We homeschool and our year is starting back up in just a couple weeks and it's going to be difficult going into this again with no ideas of what we can do to help him. There just seems to be so many possibilities and even combinations that it's hard to know how to come upon what it will be without some assistance. If anyone out there can offer help or recommendations I would so appreciate it. Oh, and by the way we have the Natural Treatments book and have tried many of the things in there diet-wise that are recommended but to no avail. Thank you in advance!

[Lamb]

I'm in Atlanta and just completed heavy metal and food allergy testing. It wasn't cheap - around $1500 and insurance didn't cover it. Thankfully we had a fully funded health savings account. The name was Susan Tanner and she is a medical doctor. She was very nice and may be willing to do a payment plan and/or only a few tests at a time. I would recommend the heavy metal testing if I had to choose.

 

Good luck,

Nancy

[Joshuas_mum]

Hi

One thing we have tried, which I believe has helped, has been to greatly reduce my son's exposure to salicylates, which are naturally occurring chemicals found in fruits and vegetables. There is alot of info on the net about it, but essentially he only eats pears, golden delicious apples, and sometimes bananas and mangoes. As for vegetables, he eats potatoes, and iceberg lettuce, with small amounts of others thrown in sometimes. It seems difficult at first, but we have gotten used to it. It can take a while for the body to rid itself of salicylates, approx 6 weeks I have read. This, together with the removal of artifical additives in his diet, has, I believe, really helped our son's tics to be 90% improved. Worth a try, at any rate!

All the best,

Karen

Edited July 28, 2011 by Joshua's mum

[laurena82]

Hi Trinnie---

 

Yes, the waxing and waning of symptoms makes it SOOOOO hard to figure out if something helps....or is just waning then....!!

 

Plus, as others mention----what's great for some seems to do next to nothing (or make worse!) for another! augghhh!!!

 

I also have heard that chiropractic docs can help too, but not sure what they would do and don't want to be in a place with treatment that would require us to be under constant therapy or visits. I'd prefer to find what it is that helps him and go from there on our own.

 

For my son, ....food allergies was huge trigger---and what helped me identify major ones was finding a chiropractor who did "applied kineseology" to identify food triggers-----I kept food diary of what he ate for one or two weeks----then anything he ate more than a few times/week, I brought samples in, and one by one, he put on his tongue with muscle testing. With foods that decreased muscle strength, the chiropractor then put supplements on his tongue to see if strength increased with these, and those that did we started giving, as well as eliminating the food triggers.

 

FWIW--in my son's case---eliminating food allergans was WAAAYYYYYY more successful at noticeably decreasing tics than adding any supplements------------BUT, as you can see from others posts--------others have had different experiences!

 

 

ANYHOW--re: the chiropractor, it cost me $90....but that was about 15 years ago. At that time, anyhow, most insurances didnt cover chiropractic---so they were pretty reasonable with charging rates people could afford out of pocket............but not all chiropractors are as wholistic as others-----

 

sigh....you have to shop around with all of these things................(((((((((((((HUGS!!!!!))))))))))))

 

 

(PS: as another posted on here recently----pollens, etc might be a consideration if you noticed symptoms worse this time of year usually: in summer/fall on annual basis?? ??)

[Chemar]

Hi Trinnie

although TS tics characteristically wax and wane, it is usually not for such long periods at a time as you describe.

I would personally think there is another cause for the tics because of that.

 

are you only seeing the motor and vocal; tics, or are you also seeing behavioral/mood changes etc?

[trinnie]

Hi Trinnie

although TS tics characteristically wax and wane, it is usually not for such long periods at a time as you describe.

I would personally think there is another cause for the tics because of that.

 

are you only seeing the motor and vocal; tics, or are you also seeing behavioral/mood changes etc?

 

Cheri:

 

They don't often wax and wane to that extent but in the few years that we have suspected this I would say this has happened 3 times, where all tics seem to be gone for a period of a few weeks to a month or recently about 5 or 6 weeks and then they come back full force (for no apparent reason) and bring along another new tic. As far as behavioral/mood change he does have those as well. He misbehaves or is mean to his brothers at times as well as gives his dad and I the "cold shoulder" and won't respond accordingly to signs of affection. My husband wonders if there is a daddy/son link here somewhere that when he has good bonding time and closeness with daddy that his tics are better. This is a hard one to measure as he has good time with daddy some days and then immediately the next day not as much. Daddy has other children to spread his time to too, so this is difficult for my husband. Any thoughts? Are you thinking he may be misdiagnosed? I appreciate the comments for those who have offered them and we hold out hope that we will find what we need to to help him. Thank you!

[Chemar]

Whenever there is atypical waxing/waning with a TS dx, I tend to look at possible other root causes.

 

Have you looked into a possible "infection connection" ie PANDAS/PITAND?

[trinnie]

Whenever there is atypical waxing/waning with a TS dx, I tend to look at possible other root causes.

 

Have you looked into a possible "infection connection" ie PANDAS/PITAND?

 

 

No we have not looked into that. I had thought about it but I don't believe my son's ever had a strep infection. Is that the only way to get PANDAS? Also, how would one go about getting that tested?

 

Thanks again!

[Chemar]

Hi Trinnie

 

PANDAS is strep related but PITAND can be triggered by other infections, and we also now have growing evidence of Lyme disease likely falling into the PITAND category, so if you are in a Lyme tick area...worth investigating

 

we have forums here for PANDAS/PITAND and for Lyme where you can get more info

http://www.latitudes.org/forums/index.php