having no luck please help

[eljomom]

Could you please explain what you mean by "other infection triggered neuro-immune disorders?" Thanks!

 

 

Hi and welcome

 

I will try to post more later, but did notice you mentioned your dad was on haldol (haloperidol?) Was this for tics? Tourette syndrome? or something else?

 

I believe that "true" TS is genetically inherited. As to what the original cause was for those genes to mutate...well, that I do not know, but I do think that those altered genes are passed on in families, as opposed to the TS-like disorders, which can also be genetic in some, but may also have many immediate rather than inherited causes, from infection (as in PANDAS) to allergies/sensitivities from exposure and environmental triggers etc

 

if this is in fact TS, please dont lose hope. my son has genetic TS spectrum of disorders, and he is now 21 and doing really well. I feel this is a combo of his age (it is known that TS symptoms, altho they may never fully go away, get much milder after the teen years are passed.....and the healthy diet and supplements that he is on, as well as trying as much as humanly possible to keep stress at a minimum

 

Have you done testing for PANDAS or other infection triggered neuro-immune disorders?

 

Sheila's book can be very helpful when one is trying to formulate a plan.

http://www.latitudes.org/book.html

 

Bonnie's vitamins have helped many. Some seem to be sensitive to them tho (possibly the soy or another of the ingredients) but most TS people seem to do really well on them http://www.bonniegr.com

 

I have not heard anyone say tics got worse on the empower plus? I only saw one thread about it here saying tics had got better with it (unless I missed others?)

I had mentioned tics could get worse with one of it's ingredients, dl-phenylalanine, which can increase dopamine levels in the brain, something that people with TS do not want as research shows that people with TS tic more when there is excess dopamine.

But so far we have only had a good report on using it

[Chemar]

Could you please explain what you mean by "other infection triggered neuro-immune disorders?" Thanks!

 

 

 

 

Hi

 

in addition to strep, tics & other neuro symptoms appear to also be triggered by things like clostridium, staph, Lyme disease microbes, viral infections (eg epstein barr), mycoplasma, Candida infections, mold exposure and other fungal triggers etc. Even things like cold and flu infections can exacerbate symptoms for some

[eljomom]

So does that mean that she likely does have TS? if her symptoms are exacerbated by illness? I posted a few weeks ago, but was not able to open the responses. I think my computer is finally happy again, so I'm going to copy what I posted that I saved in a word doc.....any thoughts would be appreciated. Thanks! Thinking I may need something for MY obsessing soon;)

 

"I have a daughter who will be 7 in December, who suddenly developed a bunch of tics within a week of running a high fever for one night. There were a bunch of kids in the area who had that, and none of them had strep, so I didn’t take her in. She was totally fine the next morning. In any case, I am wondering if tourette’s can start so abruptly like this? My brother has Tourette’s and OCD, so I know it runs in the family.

 

My daughter has been a bit OCD for as long as I can remember (won't eat the last bite of her own sandwich b/c it's been touched, won't eat things that have been touched at times), very particular about how clothing feels, etc. She started a tic this spring where she twitches her nose, and also has been sniffing her fingers for a while (and does some weird finger straightening thing right before sniffing). About 3 or 4 months ago, she started to always be rubbing her scalp (my mom does this).

 

On June 24th, she ran the fever, and within a week of it, she was doing the nose/mouth twitch, but then adding a jaw movement, where she sticks her lower jaw out and sort of chomps 3 times right after the nose/mouth twitch. Also a head shake (fast then slow), finger stiffening/fluttering, arm stretching. She’s blinking her eyes funny and raising her eyebrows, and also opening her eyes real wide in a stare. Now there's even a little tongue thing where she licks her lips. She just added a toe stretch and kicks her knee so her heal comes up. This week she’s added this thing where she shakes her arm(s) or leg(s). She is also doing a strange staring gaze off to the side, where she does it over and over (she also does this with her eyes). She does seem to be more hyper, but also spaces out/gazes sometimes. Now the tics seem to all come at once, like she'll run through the whole line of them in a spurt, like they are almost deliberate, then take a break.

 

I have heard a bit about PANDAS, but not sure what really is done for that—antibiotics seem irrelevant when there is no active illness, and I doubt I’d go through plasma exchange, etc. Plus, where do I start with that one?? But at the same time, my “normal” little girl at the beginning of the summer is like a totally different person now, ticcing all the time. She stops ticking when she is very focused, like when she’s drawing. TV watching is the worst!

 

I am concerned that I might mess too much with her brain chemistry by interfering with it (friend of mine who's son has MILD TS swears by 5-HTP), as my oldest daughter outgrew her tics after about a year (see below). At the same time, I don't want her to suffer. I think it bothers me more than her--in fact, I feel horrible, because one day I just got angry at her and imitated her, and I can tell she’s looking at me to see if I’m looking at her. Any time I look at her, and even her sibs, now she says "What?" I feel horribly guilty about this, as she has always been my "baby" who snuggles with me, and no longer does since starting the tics. Although she is very clingy to me. My friend swears 5 HTP is the answer, but not really sure how that would help Tourette's??

 

I have 4 kids, and when my oldest daughter was 7, she started having a few really complex tics--bending over at the waist, pushing her belly out and in--really weird-looking stuff. She did an occasional are straighten and neck thing, and some toe curling. I video-taped her, and showed it to a pediatrician who has 2 sons with TS. He said you only medicate if it's affecting the child physically, emotionally, socially or academically. So we waited. She finally subsided with these tics after about a year, but still has some mild OCD. (She was on and off Zoloft from the time she was 5 until about 9). Evening up--scratching one side, then the other, touching things with both hands. In fact, all 4 of my kids do that. They are all sensitive to tags, socks, etc. My 3rd child also has had episodes of throat clearing, and wrist wringing---she is 8, and these seem to have stopped.

 

So, my questions are:

 

Do you know Tourette's to start so abruptly with an explosion of a plethora of tics? Or even Transient Tic disorder? I just wonder if this is a normal start to Tourette’s? or if there could be something related to her fever and it affecting her brain?

 

I don't know if I should bother with a doctor, since “children have to have motor/vocal tics for at least a year”... and then try to medicate after that point. As a mom, I feel like I want to do something, but don't know where to begin. I called our local Tourette Syndrome Assoc. (TSAGW) 4 weeks ago, but haven't heard back. My husband feels like we should not make a big deal out of it and just wait it out. It doesn't make him stressed or sad (I say, ignorance is bliss!) And would I go to a neurologist, psychiatrist, or some other doctor?

 

The fears as her mommy---is she happy, will anyone love her, will she be teased or thought of a a weirdo with mental problems? I know these things bug her a bit, because after a big long string of tics, she'll say "ugh, I'm tired."

 

I’m happy to hear anything you might be able to tell me. Thank you for listening, and for any insight.

 

 

Could you please explain what you mean by "other infection triggered neuro-immune disorders?" Thanks!

 

 

 

 

Hi

 

in addition to strep, tics & other neuro symptoms appear to also be triggered by things like clostridium, staph, Lyme disease microbes, viral infections (eg epstein barr), mycoplasma, Candida infections, mold exposure and other fungal triggers etc. Even things like cold and flu infections can exacerbate symptoms for some

[EAMom]

With the history of strep and tics....have you explored PANDAS?

 

Lots of pandas kids have low strep titers (ASO/ anti-dnase . And, many PANDAS kids get strep without typical (fever, sore throat) symptoms aside from tics/behavior changes.

 

Have you considered running the Cunningham test?

[EAMom]

Hi Eljomom,

 

I have heard a bit about PANDAS, but not sure what really is done for that—antibiotics seem irrelevant when there is no active illness, and I doubt I’d go through plasma exchange, etc. Plus, where do I start with that one?? But at the same time, my “normal” little girl at the beginning of the summer is like a totally different person now, ticcing all the time. She stops ticking when she is very focused, like when she’s drawing. TV watching is the worst!

 

I would REALLY REALLY love if you would re-post your child's story on the PANDAS forum (assuming you haven't already). Lots of great PANDAS mom's (who don't regularly check out the tourettes forum) will chime in and answer your questions. I feel it is critical that PANDAS isn't prematurely dismissed in your child.

 

BTW...Long term antibiotics really do help lots of PANDAS kids (even if there isn't obvious active infection) and there are lots of other things that can be done as well (IVIG, anti-inflammatory, plasmapheresis in severe cases, etc.).