New TS Mom says Thank you

[2girlsmom]

Hi Everyone,

 

This is my first posting but I am thoroughly familiar with this forum. I just wanted to say "Thank You!" to all of you for sharing your stories and information with me. My daughter was diganosed in Oct 08 with transient tic disorder and in jan 09 with TS. Those first few months of watching her out of control with facial and verbal tic made me cry and feel helpless as a mother. I stumbled on this website while we were waiting for the neurologist appointment. I am so thankful I did. By being informed before the appointment, I was able to speak up while being handed devastating news. I said no to the drugs being offered and stated we wanted to try healthy alternatives first. Thanks to the information I found here I know we made the right decision. My daughter is doing great. The tics are greatly reduced only I seem to notice them. She has comorbid issues but they are more manageable. We owe it all to no artifical colors, flavorings and/or additives. We added a multi vitamin. We removed gluten from her diet. That seems to help the most with the minor OCD and Rage isssues. I just want to say thank you from the bottom of my heart. You all touch more peoples lives than you know. Thank you

[faith]

wow, thanks mom for sharing that.

 

 

 

Faith

[Chemar]

thank *you* for the encouraging post

[ilovedogs]

So glad to hear that she is improving. It's interesting to hear that removing wheat helped with the co-morbid conditions. I might have to try that some day! If I could just get my son to give up standard pizza and try the cornmeal crust ones! He's not a big bread eater, otherwise!

 

Well, this website may have helped you out, now you will be helping others with your encouraging posts and words of wisdom, too!

 

Bonnie

[2girlsmom]

When we first removed gluten from her diet we thought it might help reduce the tics. But what we can tell by watching her behavior is it has seemed to calm her down. She doesn't appear as wired or high strung. She still has a short fuse but not as much stuff sets it off. Before she was very concerned about people washing their hands and germs. Especially her little sister was the focus of "being dirty". When she doesn't eat gluten this issue doesn't appear to be in the forefront of her mind. When she has pizza, cake, etc. at parties or school things these behavior return with their the old intensity. Removing gluten has not solved the problem, she still has "issues" but it has helped in our household to make it more managable. On a side note, the whole family is gluten free as a show of support and we all are feeling much better, energized and with no gut issues!

[lynnie1264]

Hi 2girlsmom,

 

That is great that you've found an answer. It truly is inspiring that it can be done.

 

With my son I've never totally cut out everything, but severely cut down on the artificial stuff and try to avoid processed meats etc. It's so hard though as even the things stated as being good for you have all this other stuff in. One thing I do totally avoid is the artificial sweetener.

 

May I ask if there's any history of TS in your family?

 

Thank you so much for a lovely post.

 

Lyn.

[2girlsmom]

Hi Lynnie1264,

 

There is no history of Tourettes in our family but, when my DD was diagonised my older brother commented that he tics currently. He is in his 40's and it started in his late teens and has progressively gotten worse. He is on medication to help control it. I didn't ask many questions because he is extremely private and that is the most he has shared personally with me in years. My husband's brother also blinks excessively (more than most people but that's it. I don't want it to sound like we "cured" her problem, she diet changes have helped so it is not a daily struggle. After about a week or two she rarely comments on the new food choices. We do allow her flexiblity when it comes to birthday parties and special occasions, etc but are prepared for a rough few days following the indulgence. The whole family went gluten / artifical free to support her.

 

I always say this work in progress and we change things as needed. This is working for us now but who knows what will happen as she becomes a teenager. Sorry for the ramble i hope i answered you question.

[EAMom]

Hi 2girlsmom...

Have you considered PANDAS to be a possiblity???

with the rages/ocd/tics I would think about PANDAS. Check out my post to Shydee75 http://www.latitudes.org/forums/index.php?...art=#entry30716

 

I would do throat cultures now (and again if symptoms/tics worsen.) (Unfortunately, the best time to do the culture is at the onset of symptoms!)

 

IMO all new onset tic cases should have a strep throat culture. It bugs me that peds don't do this and that neurologists either say wait for 6 mo. and do nothing or want to rx out lots of tic meds. arrghh! Even if 1 out of 10 kids with tics is PANDAS it is worth doing the cultures if it might catch that one child with PANDAS.

[colleenrn]

I agree 100% with EAMom's post about getting a throat culture (NOT rapid) ASAP. Did any of your physicians even mention this as a possibility. It should be standard protocol with ANY child's onset of tics or OCD or anxiety to do a culture and the fact that so many doctors overlook this is scary!

Good luck!

Colleen

[colleenrn]

When I say NOT a rapid strep test, I mean to say don't ever just rely on that. It's fine to do a rapid, but a lot of physicians do not follow up with a culture when the rapid comes back negative, so a lot of people are walking around with strep b/c it goes untreated.

Colleen

[2girlsmom]

EAMom and Colleenrn,

 

Thanks for the advice. I am a little confused about what PANDAS is. I understand it is the body's reaction to an ongoing strep infection that mimics TS? My DD onset wasn't completely out of the blue, she always blinked differently (more often) since she was a toddler. We remember the vocal tic (its like a hiccup) in the evenings occassionaly when she was 4 or 5. In kindergarten (5) she became obessive about germs and other kids breaking the rules. Simple ones like sharing food and washing hands. Even as young as 3 I remember anger from her that was not appropriate for the situation. She is my first child so i didn't have a frame of refrence. As her younger sister got older i realized my DD was "more tightly wound" than most. When she started blinking, vocal ticcing and nose scrunching all the time (Oct '08 she is 8), is when I took to the dr to address the issue. The TS dx put alot of the pieces together. In Oct. '08 is the first time everything was happening all at the same time. Do you still think she might be PANDAS? It's hard because it seems like I am informing the Dr. more about TS than he is helping us. i often think about switching to a DAN Dr but it will be 100% out of pocket and right the situation seems uncontrol. Thanks.

[colleenrn]

Yes, IMO, it could be PANDAS. My daughter was diagnosed at age 5 with PANDAS, BUT looking back, I now realize I saw some symptoms as early as 2-3. My now 8 yo, I saw symptoms around age 4. My 6 yo, I saw symptoms around age 3, AND my 2 1/2 yo, I have seen signs since he was 2. Had my 1st child NOT been diagnosed with PANDAS, I would not know that was what was going on with my other three kids.

It sounds like your daughter's symptoms all worsened in Oct 08? It could be that she was exposed to strep at that time. A lot of PANDAS kids do not have any physical symptoms, so they don't get tested for strep b/c it does not seem like they have it, when they really do.

It is often that the parents DO know more about this than the physicians b/c a lot of physicians don't even know PANDAS exists.

I would start with a throat culture (and ask them to grow it out for 72 hrs.) and then go from there. There is a wealth of info on this forum about pANDAS and lots of parents ready to help new parents. Hang in there!

Colleen

[EAMom]

It may not be a coincidence that your dd's symptoms worsened in October...the start of the "strep season" (of course you can get strep any time of the year).

 

We didn't learn about PANDAS until our dd (7.5 years old at the time) developed anorexia nervosa (had to be hospitalized for malnutrition, acute food refusal), OCD, tics, psychotic behavior, extreme anxiety, depression, (pretty much the whole ball of wax!...tics were relatively mild though, the least of our problems!

 

PANDAS is tricky b/c some kids get tics, others get OCD, others anorexia, others autistic behavior, ADHD, anxiety, tantrums, or any combination of these symptoms.

 

In hindsight, we realize this was not her first PANDAS episode. I do remember getting a lead test on her when she was 3-ish because she was acting so tempermental. At 4.5 she developed sudden onset daytime urinary urgency (acting like she had a bladder infection). Urinalysis and urine culture were negative. About 2 days later she developed a high fever, which we now think was strep. Unfortunately, the ped. never did a throat culture. About this time she also developed some compulsive handwashing (a neighborhood child had lymphoma, so she was washing hands a lot so she wouldn't get sick like him!). etc. etc...all of this was undiagnosed, "under the wire" so to speak, until things came to a head last year. It had to get bad enough before we could put all the pieces of the puzzle together. My husband and I spoke to over 20 docs (peds, mostly psychiatrists) before someone said "Check her for strep". At that point we googled "strep" and "anorexia nervosa" and learned about PANDAS. It shouldn't be that hard!! Our ped (who later claimed to "know all about PANDAS") should have said "Let's do a throat culture" when I told her about the tantrums, tics, anorexia, right off the bat!

 

Neither of our dd's develop "regular" strep symtpoms (maybe a fever, but not a sore throat). They had never had a throat culture until PANDAS dd was in the hospital and we demanded one (it was positive, sister was positive too!). A lot of PANDAS parents report the same thing...no strep symtpoms aside from behavior change.

 

Here is a website with some info. on PANDAS http://www.webpediatrics.com/pandas.html

[2girlsmom]

I will contact our family Doctor on monday and request a Strep test. She has had strep tests in the past and all where neg. (both rapid and grown). If she had her massive onset in Oct and she only mildly tics now would Strep still be found on a 72 hour test now? Should I have her younger sister tested too? From the little reading I've started it seems to effect family groups. Thank you for sharing your stories, it helps knowing we are not alone.

[EAMom]

Yes, I would definitely test both children. I would also re-test when symptoms worsen.

 

Unfortunately, a negative culture doesn't 100% rule out a strep infection...strep can hide out in the sinuses (or elsewhere) where you can't easily culture. Some people find getting titers (ASO, anti-dnase B ) helpful in that case, although low titers do not rule out PANDAS either. (Our dd's titers were low despite positive cultures.)

 

Good luck!