So worried, daughter has tics

[mert]

Hi All ;

I am a worried father of a wonderful 4 year old lady with tics. Just wanted to share our story, so far, and hear from you. 

It all started 4 weeks ago with head movement, which was hard to miss. However I had seen that she was flaring nostrils time to time before, which might be the initial tics. Not %100 sure though as she is slightly allergic to dust inherited from me, I guess. 

For the last 4 weeks, she added some other tics all of the simple motor tics. For the last 2 days, I am recognising a breathing tic too. Some of the tics only appeared briefly, some of them change shape and come as new variations. i.e. head jerk movement turned into a nodding movement and it's now turning into something else. 

Frequency and intensity of tics change a lot, however we only had 2 days where frequency went down to couple of tics all day. Intense playing with her friends usually lowers the frequency unless she is super excited (like her birthday) 

We visited a Paediatric Neurologist who tested for Pandas and also did a EEG. All tests were within normal range and EEG was also ok. We were told to wait 3 months. 

Waiting is pretty hard, as you might guess. I think that I'd not be worried much if my daughter did not have such variety of tics. At any given time I think 3-5 tics are active. And the last breathing tic, which seems to appear with other tics, is also increasing my anxiety. 

Other then tics, she is neuro-typical. I don't observe any signs of OCD and/or ADHD. She is quite flexible and adjusts herself pretty easily to changing environment, does not have any rituals and she is ok when her routines are broken or changed. despite the fact that we moved countries and she has to go to a school, educating in a foreign language, she seems to be ahead of the curve  slightly, can do basic math (add, subtract) and came yesterday saying that she could write 'Mom' (well I expected Dad) and somehow she wrote it... 

I am unable to find history of tics in the family, however a generation earlier, I don't think that people were much aware of transient tics at my country. I've just heard a story of one of my cousins having transient tics very early (3-4 years)  but could not verify. 

Her diet was almost free from junk food, but we cleared it more and cut down on milk significantly (2 weeks), added magnesium tablets two days ago. 

Her school is supportive and there seems to be no impairment within her friends.

I am unable to pin point a corralation of tic frequency and intensity with other things. Only sleep quality/quantity seems to have a relation. 

I will try to update once in a while. 

I wish the best for all  of you out there. 

best regards

Mertol 

 

 

 

 

 

 

 

 

 

 

[Sheila]

Hi Mertol, thank you for sharing your account of your daughter's tics. It is of course normal to be concerned, and the "wait and see" approach doctors often recommend for tics is frequently not too satisfying. However, it does sometime happen that tics lessen with time, so that's the good news there. However, most people on this forum are looking for answers and steps they can take to hopefully improve symptoms rather than just be observers.

It's wonderful that your girl is so bright and doing well even in school even with a foreign language.

I'm curious -- where do you live now, when did you move there, and what countries were you in previously? 

Besides a dust allergy, do you or her mom have any other allergies you are aware of? 

We'd love to have an update now and then, as you indicated. It's good to read you have focused on her diet.

You don't have to answer these questions, Mertol, I just thought members might like to brainstorm with you if you want input.

All the best, Sheila

[mert]

Hi Sheila ;

Thanks for the reply. 

Like all, I am looking for answers and in the meantime trying to share information so we may be an answer for someone else, even if can't find the answers we looking for immediately. 

We are living in Dubai at the moment and we moved here 10 months ago from Turkey/Istanbul. I think that my daughter was slightly worried about loosing friends for a short while but there was not much stress I was able to recognise and she looked like she adapted significantly faster then I thought she would. But I understand that the mind of 3-4 year old works mysteriously. 

There is no other diagnosed allergy that I have , other then allergic rhinitis (dust, cats etc...) . However I am almost sure that I am at least intolerant to chocolate and nuts. (I am aware that some research has linked Allergic Rhinitis to TS ) 

It's quite interesting that almost all research papers I've read,  , there is so many conflicting results, deducting from each papers credibility. 

While I was able to find some research papers relating allergy and tics or TS , there seems to be no widely accepted one. 

But that does not mean that I will not look in to it. I found a doctor , specialised in this topic here.

We will probably be visiting him shortly, at least I know it won't hurt, and it will make me feel better as doing nothing is not my thing. 

As an update today we have recognised that my daughter started humming (not continuous but in synch with breathing, not %100 sure if it's a separate tic or part of the breathing tic) so I am now worried 2X. 

The answers I am looking for are;

1- It's been only 4 weeks, since the first instance we noticed. Tics adding up and changing so quickly is a sign of something unusual or this is common? 

2- Should I rule out Pandas as preliminary tests are negative, there is no OCD/ADHD or should I push for more tests. 

3- Given our circumstances what are the chances that these are all transient tics and remit? 

I wish all the best for all worried like me and I promise to be around for support even if all goes back to normal. 

best regards

[supermom13]

 Please keep us updated on what your doctor suggests.  I also have a 5 year old son with tics since march 25th.  He ticced pretty consistely for 4 weeks and it has seemes to stopped with a few throat clearing throughout the day.     He has really bad seasonal allergies.  Pollen during the spring and i believe dust in the winter.  It is so hard to wait and see since all we want to do is help our children. 

[mert]

Hi Supermom13;

I am very glad to see that your sons tics are going away. I am sure the last one will be gone shortly. And a few throat clearings may also not be a tic, I have allergy and a few throat cleanings is pretty normal for me. 

Once we visit the doctor, I will share all the info. Please let me know if you have any specific questions you'd like me to ask. 

I'd be very pleased if you can share some insight on how many different tics you were able to notice and at what pace did they go away. 

What I am worried is while older tics frequency and intensity is going down slowly (with ups and downs) , only neck/shoulder tick is gone 8I hope, not %100 sure) and several other tics are added to the list. 

 

best regards

Mertol

 

 

 

 

 

 

 

 

[mert]

Since my last post, she has gained two more tics. One is vocal and connected tightly to the abdominal tic, making a sound like mmh , ummh briefly. Usually occurs before sleep but sometimes I can hear it during normal times. Other one is, moving the jaw to back/side of mount. 

 

PS: Looking backwards, more then a year ago I was able recognise her moving her jaw front (asked my wife, dentist, to check if there was something wrong with her jaw closure etc...) and her nose flaps flaring (pretty hard to notice as her nose is smallish) Still I can not confirm that these are %100 tics and were present a year ago. Back then, like everyone would in a year, had a few infections. 

Our first doctor has tested Anti-Streptolysin Abs(Turb) [which I think is same as ASOT , right?] and a throat swap and did not find anything. 

We have not seen other symptoms of PANDAS/PANS like OCD, AD etc.. while we have some small issues like : 

- She likes to stand late and does not want to go sleep and may sometimes wake up mid-night. 

- She has urinated in sleep , 2 times last 30 days (at those episodes she had trunk a lot of water before going to sleep) 

- Her tics get 5-8X more intense/frequent if she is exited (we went to a Floating Ship Hotel) 

I am super worried as she has developed  vocal tic and she is adding a new tic every 3/4 days. 

My question is should ask our doctor to go for more comphrensive tests for PANDAS based on the fact that tics are growing very fast? 

 

 

 

[edsonr]

Hi Mert, curious how things are progressing, and if you founf anything that has helped?  I have gone through something similar with my son.

[mert]

Hi Edonr;

So far she had developed several different tics, including a vocal one and a breathing tic (only visible just before going to sleep) 

However some of the earlier tics are barely visible and very rare. It's more like we have subset of tics some of which are changing in short notice. 

For the last 7-8 days frequency of tics went down considerably to a point I can see 1 tic per minute and almost no bouts and longer intervals where we don't see any. 

Right now, her allergy level is up and she is also ill. I did not yet recognise a correlation of increased tic severity vs allergy or vs being ill. We went to paediatrician for the fever (not for tics) and he said it's probably viral and advised to wait as fever is not high and not continuous. However she has sore throughout (visible, not sever) and I can also recognise strep rush like pattern around her mount (in vey mild form, I was not in the doctor appointment but made my wife ask about and paediatrician said it's normal during fever.) Paediatrician also offered to take a look at Strep tigers as he was aware of pandas and claimed that he had diagnosed one lately (he also added that we had the strep tiger checked already couple  of weeks ago, so that's kind a redundant) My wife did not want the kid to go through giving blood. 

It's almost impossible to understand if anything helps or it's just placebo. So far that's what we are doing 

1: added magnesium supplement 

2: trying to increase sleep time. I am positive that sleep duration/quality is important and correlates. 

3:A lot less TV, less then 5-10 min average, usually zero. Converted tV time to physical activity and role playing 

4:Almost no iPhone/ipad time (her tics really increase playing with those) 

5:More time with her peers. (not very easy in the mid of summer in Dubai) 

6:Less milk in the diet. almost no junk food. Just like others, it won't hurt anyway. 

I hope that your son out grown all these and wish the best for you. 

 

best regards

 

 

 

 

 

 

 

 

 

 

 

[edsonr]

Thanks for the update, I wish you the best as well.  My son's tics went away for a good two months, but recently started to surface again with a breathing/humming tic.  I notice it mostly when on screen time, but we have loosened up the previously strict diet and strict screen time policy, but I'm hoping to tighten up the diet again and cut down on screen time to see if that helps.  

Tough part is my sig other isn't as hardcore as me, I read labels before I give things to my son who has the issue, but my sig other doesn't.  She has recently been giving him ice cream sandwhiches -- this past week and I just read the label no that...it pretty much has everything I was trying to avoid (high fructose corn syrup, artifical flavor, etc...).  I hope cutting this out puts us back on the positive track.

Well hope to hear positive progression from you and your family, please keep us updated.

[mert]

My daughter has this breath/humm (it's more like a short melodically himm, maybe repeated 2-3 times) too. I think that it's related to the abdominal tick. Her abdomen tick causes a short stroke of air flow and looks like my daughter is covering the airflow by making this noise. (educated guessing here) 

%95 of the time this tic surfaces when she is passive/bored. 

Cutting screen time costs a lot of free time, from me and the wife as we need to perform rather then TV

 

 

[mert]

An update. I was kind of wrong that her tics are not correlated with allergy/illness as on the 3rd day, tic frequency, intensity and number of different tics rose sharply. 

She was having repeated sneezes, scratching around nose and eye, running nose, which are the exact symptoms I have when my allergy elevates. (My wife still disagrees that we have positive evidence) 

Anyway within 24 hours 

- Started ABX (augmentin) 

- Removed %90 of the rugs [we already had very minimal amount of rugs] 

- Installed 2 dehumidifiers to keep humidity around %50 so dust mites die. [that's good but not enough]

- Installed 3 high quality air purifiers with HEPA filters , each can cover 50m2

[all second hand btw ]

Frequency and intensity of tics went back to base line, though as I changed way too many variable I don't correlate this to anything we've done. 

Things to do : 

- Change mattress's and pillows to anti-allergy versions

- Properly clean the AC system or get it cleaned by pro's. 

Drop me a PM if you need more info on how to choose dehumidifier and air purifiers as there aretooc many science fiction out there. 

best regards

 

[mert]

A short update, while I am on the site. Tics are slightly getting better but still not as good as it was a week ago. Her allergy level seems to be improving, inline with tics condition. As of yesterday I've removed the very last rug (was at bathroom) and added pillow protectors (anti allergic - dust mite proof) and changed a few of the pillows with new anti allergic ones. I did feel an improvement as my nose were far more open in the morning then they used to be. Will add mattress protectors but it's slightly hard here to find zipped ones. I am aware that I can only control what is in the house only. 

We got an appointment for the allergy doctor (8th of July)  

In the mean time tics are rotating pretty fast. Now we got a facial (grimacing around jaw) which is pretty infrequent. There was an other tics, moving her jaw in an awkward way but that only lasted 2 days and couple of instances. Not sure if this will be around or will go away like the other one. Rotating speed is a lot higher then what I read. Some say, it's sign that these are transient while some also say that this is pretty common with TS. 

We got no signs of anxiety, ADHD and OCD. I think that it's pretty uncommon to develop ADHD after this stage but OCD is something to look for. So far she is one of the most pragmatic kid I've seen at the very opposite end of OCD spectrum.  

[mert]

Here is an other update on our status. 

We went to the allergy specialist, however we were not able to complete the blood tests as two different parties were not able to get the blood. My sig other postponed it... We will probably give it an other try in September. 

Since the last post tics went down a little first, then went up a little for a brief period , and now for the last 1 week there are significantly down. I still see/recognise them but it's others don't see. 

I think that not going to school has a positive effect. Lowering the anxiety level was my key focus and carefully adjusted everything accordingly. 

Still her tics are extremely elastic. Dominant tics which looks like they are here to stay goes away within 4-6 weeks and gets replaced with something else. 

Vocal tics are almost gone at the moment. Maybe just a little bit of breath tic before sleeping. I think those are more related to her abdominal tic being milder now. 

Almost all tics are rarer and intensity is quite low, with bouts being reduced to 1-2 instances daily. 

We will be going for a 30 day vacation at the home country hope that this won't elevate... 

[edsonr]

Thanks for the update Mert!  Sounds like my son, tics changing daily and appears to be more when idle.  Hope things go well on your vacation!

[MLee]

Thanks for the update! So glad to hear that almost all tics are rarer and intensity is quite low. We've been going on vacations this summer as well, as I get really stressed that the change in environment, routine and some food will cause issues. I understand. I'm hoping your vacation goes well and that the tics won't elevate.