Help with tics that have been worse lately...

[laster99]

My 7yo DS was oficially diagnosed with TS at 6, though we realized he had it at 4, and his vocal tics go all the way back to 2 years old. After doing some research, I felt like we had his tics pretty well under control. I'd had him on a multi and DHA for a while and then I added B complex and a "Kids Calm" formula which contains Magnesium, Zinc and C. After the last 2 I added, he got noticibly better, bringing his tics waaaay down. I also realized that he has been allergic to milk and soy his whole life so those are gone too. I'm not sure what has happened, but over the last week, it is as if we have taken him off of everything and he is worse than he has EVER been! One vocal tic that was only a high pich squeal (sounds sort of like a puppy whining), literally turned into a SCREAM night before last. He ended up falling asleep way early that night....I think because he had literally worn himself out. My husband and I were shocked and upset and even my 2yo DS was worried about him saying that he wanted to"make bubby better!" Even though, they were not screams yesterday, he is still much louder and more frequent to the point that it is even hard to talk or think!

 

Anyway, I can't say that there have been any dietary changes, but I am looking for suggestions on possibly new supplements. Has this sort of thing happened to anyone before? I am kind of at a loss....I thought we were doing pretty well and just suddenly this happened! I have seen a few things on here about GABA (I think) and something with seratonin, but I am clueless about these or even how to get them. Any suggestions would be helpful at this point. Thank you!

[Chemar]

Hi and welcome

 

so sorry you are experiencing this intense waxing with your son. For those of us who live with TS in family members...we sure can understand your frustration as often it does seem that altho we are doing everything "right", yet something triggers the waxing

 

when my son has had such intense waxing it is usually exposure to something in diet/environment or an illness (especially anything microbial.)

 

He also always had waxing when teeth were coming out or in

 

strange as it sounds, waxing moon has also always resulted in waxing tics for my son, altho it is much much subdued in the years since we have had him on his natural treatment protocol. This harvest moon time of year has been characteristically worse for him always

 

 

 

my son has been thru the "screaming" tics and I know how hard that one is.

 

you mention GABA and serotonin....where GABA is helpful for anxiety etc and serotonin elevation is used to treat OCD, depression etc...these dont have a direct tic reducing effect, altho it may be secondary as when the stress of anxiety, OCD etc are lifted, then often tics wane too. There are a number of supplements like inositol and tryptophan etc that increase serotonin, but again do be careful there as unless your child is known to have low serotonin (usually manifests as OCD, depression etc) then you dont want to supplement to increase it

 

I have a link in my signature on what we have done to help keep his TS/OCD under control (it used to be very very severe and now overall very mild, even when in waxing)

 

hope that helps a bit

[Debbie1]

Hello Laster99,

 

So sorry to hear you are going through such a hard time.

 

My son had a very similar pattern. He was diagnosed with a tic disorder a little less than two years ago and has had ups and downs. In February 2008, we made dietary changes and saw significant improvement. He was doing great. But in August 2008, his symptoms all reappeared at once and suddenly it looked like we had made no progress at all.

 

A few people here suggested we go for a throat culture and bloodwork. Although his culture was negative, his titers were off the charts and the doctors thought it would be a good idea to try one round of antibiotics. By day 10, he was a changed child. No tics or OCD, very calm, happy and normal. Looking back at his chart, his improvement in symptoms always appeared after a dose of antibiotics. (Although the connection never seemed obvious at the time.) They are now considering him a possible PANDAS case and have recommended a completely different protocol for treatment than before. No one bothered to check for PANDAS or try a round of antibiotics before.

 

I am certainly not suggesting your child has PANDAS, but that it might be worth your while to rule it out if you have not already checked for signs. When I called my doctor to suggest a throat culture, I told him I just want to rule this out. He thought that was reasonable. Turns out, we ruled it in.

 

Hoping your child gets over this episode quickly.

[myrose]

I would agree to check the titers/ASO. You never know. I am sure there are alot of undiagnosed Pandas out there. I am not saying your son has it....its just nice to rule out as you travel the road so to speak.

He could have been exposed to illness/strep. My daughter has NO symptoms to speak of when she has strep....its very scary.

 

You can also but at home kits to test for strep. It might be a false negative so the culture would probably be best but on the other hand I like to have them on hand.

Good luck to you and I wish you speedy recovery in getting them back down

[faith]

laster99,

I was using Gaba for my son and thought it seemed to coincide with his vocals lessening, however, he is also waxing alot in last couple days. So I don't know exactly whats what. I had also introduced flax oil and tryptophan last week, so that could have something to do with it, we'll see.

 

Have you introduced something new into his diet or subtracted something he was used to getting? this could be a food, herb/spice, supplement, etc. Just curious. Had he been to the doctor recently for anything, or had any vaccinations recently?

 

Faith

[laster99]

He hasn't been to the dr. for a very long time for anything and I can't think of any diet changes at all.

 

I was doing a bit of reading again on the PANDAS. He has never had strep that I have known. I didn't know they could get it with no symptoms! That IS scary! But the info was interesting... And a lot of it seemed to match....clingyness and mood swings etc. I was reading that the titers will be high as long as a few months after. What if he had it years ago? Is it that he will still carry the virus and it will show? Just trying to understand how it works.

[myrose]

laster99.....don't be fooled by the titers, everyone has a different baseline so from my understanding its hard to know if someone's are elevated or not. Buster had a GREAT Post about this. If I can find it (I have to run) I will paste in here...if not I am sure someone else will. If you think he fits the symptoms I would suggest a call to Dr. K. He does phoe consults. Most from what I understand will start with a steroid burst...if the child improves dramatically...he will diagnose as Pandas. This is what I understand anyhow.

He is in Chicago. I wish I had some more time but I have guests from out of town and all 8 of them are HUNGRY!!!!!!!

I am sure the others will chime in on Dr. K and the titers.

I wish you the best in getting to the bottom of it. We are sort of in the same boat with trying to dertermine if we should look into Pandas more.

[Chemar]

I would suggest a call to Dr. K. He does phoe consults. Most from what I understand will start with a steroid burst...if the child improves dramatically...he will diagnose as Pandas.

 

 

PLEASE be very careful of a steroid burst IF your child has TS as this can cause a MAJOR waxing of tics!!!!!!!!

 

steroid burst seems helpful for people with PANDAS but you need to be very very careful with this if there is also TS .

I speak from experience as a steroid burst has done what seems to be irreversible damage to my TS husband

[patty]

Chemar,

 

I hope your husband is doing better. Is there anything that can help with his tics.

 

Pat

[myrose]

Doesn't Dr.K have some other criteria that one needs to fit??? Just not understanding how you would know if it were TS or pandas and so then how would you know what to try and not try?? Being that the two are so similar along with tic-order as well.

[Chemar]

I dont know Dr K's criteria but I do know what an insistent doctor did to my husband by giving him the steroid burst for pain and I would again strongly caution anyone who has suspected TS NOT to have a steroid burst as the effect on tics can be very serious.

 

People *can* have both TS *and* PANDAS

The 2 are not mutually exclusive

 

Just as my son has Crohn's (also autoimmune) and TS and we have to be very careful that we dont use things that can help the one but hurt the other. Even his GI specialist agreed we could not treat his Crohn's with the usual steroid meds as that would make the TS much worse