help for newbie--TS or Pandas, or both?

[eljomom]

I am posting here and will post on the pandas forum as well. I am a bit weary of posting on the PANDAS forum--and PLEASE know that I don't mean this in any way to reflect anyone's willingness to help here---but I am not certain this is PANDAS due to my family history, so I don't want to jump to conclusions that this is what's going on. Hope that makes sense? But I am looking for direction, as I think I am going to also need something for the ocd I'm feeling in regards to figuring this out;)

 

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 and I do this--possibly trichotillomania in some form?).

 

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.

Regards!

[Chemar]

Hi

 

yes TS can start abruptly. Perhaps it is triggered....but sometimes the trigger is not always as obvious. My TS son had what seemed to be a very abrupt onset at age 10, but in retrospect, we realize he actually did have tics and OCD when much younger, we just did not recognize them as such. There is a family history of TS

 

and yes, someone who has TS can get a strep (or other) infection and have their tics and OCD exacerbate, or be initially triggered

 

TS and PANDAS are *not* mutually exclusive

As you have a family history of TS, it is very likely that the genetic disposition for it is there in your child

 

Please do be careful tho of allowing yourself to be convinced of a diagnosis simply by what others on the internet say.

Their observations may be accurate, but only a qualified and experienced physician can diagnose PANDAS.

 

we used 5HTP successfully for OCD when my son was younger, but I honestly did not feel it had much effect on the tics directly, beyond what would be expected by calming OCD

 

when my son tried it again some years later, he did not react well to it. It is a strong supplement with direct impact on the brain so you are wise to be cautious.

 

Many people prefer to start out with supplements that have less potential side effects...magnesium for tics (most here like the Natural Calm) products and things like Inositol( a B vitamin) for OCD

 

I have a link in my signature below on what we have done over the years to help my son

 

Just remember, you will have lots of advice, suggestions and experience coming at you from many of us. Just take things one day and one step at a time as otherwise you may find yourself overwhelmed and making no progress.

[eljomom]

Thanks! I really just want to find a doctor who is versed in TS and PANDAS, and will do all the thinking and figure it out for me. Eliminate what needs to be eliminated, not based on the fact that they don't believe something exists, but also not jump to conclusions and go hog-wild on the PANDAS road. Does that make sense? Arent' there docs out there who get both issues and weed things out?? I figured my local TSA (TSAGW) would be a wealth of info, with their medical advisory board, etc. Figured if they are on TSA, the get TS and probably get the possibility of PANDAS as well. But after leaving 3 messages over the past month plus an e-mail and getting no response, I am disappointed.

IN the meantime, I would like to start with some harmless supps, like the Mg and Inositol. I will look at your link---hoping you give doses that are safe for a 6 year old. Also, you mention Natural Calm....I have also heard that Ca-Mg-Zn is a good combo. Which do you recommend?? I assume I wiould give the Mg at night, but when for the Inositol?

Thanks again,

wendy

 

 

Hi

 

yes TS can start abruptly. Perhaps it is triggered....but sometimes the trigger is not always as obvious. My TS son had what seemed to be a very abrupt onset at age 10, but in retrospect, we realize he actually did have tics and OCD when much younger, we just did not recognize them as such. There is a family history of TS

 

and yes, someone who has TS can get a strep (or other) infection and have their tics and OCD exacerbate, or be initially triggered

 

TS and PANDAS are *not* mutually exclusive

As you have a family history of TS, it is very likely that the genetic disposition for it is there in your child

 

Please do be careful tho of allowing yourself to be convinced of a diagnosis simply by what others on the internet say.

Their observations may be accurate, but only a qualified and experienced physician can diagnose PANDAS.

 

we used 5HTP successfully for OCD when my son was younger, but I honestly did not feel it had much effect on the tics directly, beyond what would be expected by calming OCD

 

when my son tried it again some years later, he did not react well to it. It is a strong supplement with direct impact on the brain so you are wise to be cautious.

 

Many people prefer to start out with supplements that have less potential side effects...magnesium for tics (most here like the Natural Calm) products and things like Inositol( a B vitamin) for OCD

 

I have a link in my signature below on what we have done over the years to help my son

 

Just remember, you will have lots of advice, suggestions and experience coming at you from many of us. Just take things one day and one step at a time as otherwise you may find yourself overwhelmed and making no progress.

[Chemar]

oh how we all wish there were more docs as you are seeking!! They are few and far between, especially as related to PANDAS, and most docs who do know about TS, take the conventional approach of trying meds or doing nothing

 

and yup, although the TSA is very good in some areas, they are not helpful or knowledgable when it comes to PANDAS and close to useless when it comes to alternative treatments for TS.

 

Natural Calm is magnesium citrate.

http://www.iherb.com...454-g/5121?at=0

They also make a Kids Calm that has some added vit C and zinc

http://www.iherb.com...226-g/5120?at=0

 

the Natural Vitality product line has been expanded to cover more bases, and they now make Natural Calm with calcium and magnesium

 

If your child is not dairy intolerant and consumes these products, they may already be getting in sufficient calcium

 

Have you seen our admin, Sheila Roger's book?

It is a very helpful reference to help you sort though all this stuff

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

[eljomom]

Thanks--I will check out that book for sure. Hoping the link will take me to an order page....

Have you heard of Nature's WAy Cal, Mg, Zn??

I'm still trying to figure out how to navigate on the board here--when I log on, it says that I have "0" unread notifications, but decided to just check and saw this post...I so appreciate finding this:)

 

 

oh how we all wish there were more docs as you are seeking!! They are few and far between, especially as related to PANDAS, and most docs who do know about TS, take the conventional approach of trying meds or doing nothing

 

and yup, although the TSA is very good in some areas, they are not helpful or knowledgable when it comes to PANDAS and close to useless when it comes to alternative treatments for TS.

 

Natural Calm is magnesium citrate.

http://www.iherb.com...454-g/5121?at=0

They also make a Kids Calm that has some added vit C and zinc

http://www.iherb.com...226-g/5120?at=0

 

the Natural Vitality product line has been expanded to cover more bases, and they now make Natural Calm with calcium and magnesium

 

If your child is not dairy intolerant and consumes these products, they may already be getting in sufficient calcium

 

Have you seen our admin, Sheila Roger's book?

It is a very helpful reference to help you sort though all this stuff

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

[Chemar]

try to avoid any magnesium oxide products as they are a waste of your money and do not get well absorbed, so also not very efficient