Did your child start with only talking/vocals?

[worrywort]

Hi,

 

I am new to this forum. We haven't had an official diagnosis of TS for our six year old son yet. It's only been a month since symptoms began. But we are still looking for answers. Our story: five weeks ago my son had the flu (maybe H1N1) and was put on Tamiflu for five days. A week after being sick he caught a cold in class. He started with coughing and sniffing, that turned into more of a snorting. Around Christmas, he started coughing regularly, and not because he was sick. After that, it turned more into a snort with soft vocals, repeating the phrase "Is this OK" and "is that OK." He had a couple of days where it was non stop, like every few seconds. We were terrified. We took him to the ER and the on call Pediatric Neurologist gave a preliminary diagnosis of early Tourettes. He prescibed Clodomine (sp?) for the tics. We didn't fill the prescription. I was also surprised that this DR made a diagnosis without ever seeing my son, or talking to us. He only spoke on the phone with the attending DR in the ER. But he said that because my son was talking, it was Tourettes.

 

A few days later we were able to see our regular pediatrician. She said it was too early to diagnose TS and that many of her patients my son's age have transitory tics that go away after time. She didn't seem to think being vocal was a determining factor, just yet. Also, she said that the drug Tamiflu has been linked to neuropychological side effects in children, and this may be related. We would have to wait and see.

 

I am just so worried and confused. My son doesn't seem to have the classic early Tourette symptoms. Up until he was sick, we never saw any motor tics or unusual behavior. He did have a couple of weeks where he opened his jaw every now and then. But he told me it was because it hurt. The dentist looked at this mouth and said he had a couple of molars coming in and that could cause some discomfort. The only other thing that he does have is sensitivity to tags on clothing and sometimes he says his socks feel wrinkled. But other than that, there is no OCD or anxeity. I would say he tends to be an active boy, but not ADHD.

 

Does anyone have a similar story? I'm trying to figure out if this is related to the Tamiflu, or if it's PANDAS, or early TS. He mostly only whispers and talks, sometimes after snorting. Lately his phrases have been complex, like "And this OK, hos, Shos...and is that OK, shos" He also has been repeating a sound "hos" over and over. It is so scary. There have been no head jerking, eye blinking, or body movements. Once in awhile he will stand straight, like being at attention. But it doesn't happen much.

 

I should also note that I have eliminated sugar, most dairy, no food dyes or corn syrup. He takes Vitamin C, D, Omega 3, and Greenies. He hates veggies and doesn't even like fruit. The diet thing has been really hard. I also have been giving him Epsom salt baths every other night. They do seem to help control the tics a bit.

 

Thanks.

[Chemar]

Hi

I agree it is very odd that the doctor would diagnose TS that way! TS is diagnosed after manifestation of BOTH vocal and motor tics for at least a year, and usually with family history of tics. Good that you havent filled the clonidine...it can have some really nasty side effects and especially when it may not be TS, I am astonished that a doctor would be so quick to rx it....sigh then again, Iguess I should be used to conventional docs doing this by now

 

we cant offer any diagnosis here, but the repetitive vocal and especially the "is this ok" sounds more like an infective agent OCD/tic type reaction....what some call PITANDS...similar to PANDAS but not strep related, rather some other microbe. It could also have been a reaction to the tamiflu, which some have reported as well. Did they check your son for strep at the time he was ill?

 

there have also been some posts here recently related to some people having tics as a result of TMJ problems (temporomandibular joint)and many of us have also noted that teething issues can increase tics (even for people who dont appear to have TMJ probs, like my son, who does have genetic TS)

 

try not to worry and rather just keep doing your own investigation. Your pediatrician sounds level headed so hopefully will be willing to guide you thru all this and read up on what you discover

[worrywort]

Thanks for your feedback. It gives me more to research. It is interesting that my son hasn't lost any teeth yet. He's 6-1/2 years old and doesn't even seem to have any loose teeth either. Wonder if there is any correlation.

 

We did have him swabbed for strep at the ER, but it came back negative. But since I heard that you can still have PANDAS with a negative swab, I asked my (wonderful) pediatrician about it, and she was willing to prescribe Amoxocillian for him if I was concerned. He has been taking 1,500 mg a day for the last 2 days. I started to see an improvement on day one, but then yesterday he started having more vocal tics again. She prescribed a 10 day treatment. I just want to rule out any infection.

 

Unfortunately, we had to change health plans beause my husband started a new job. We are with Kaiser now, and our current pedi isn't a member. But she did refer me to another pedi she knows well and trusts at Kaiser. I have my fingers crossed he will be just as good.

 

Thanks again for your comments. I hope to find some answers soon.

[faith]

worrywort, (love it.. )

I will just ditto all the Chemar said above. I see that you have a negative strep, okay, did they do a culture as well? I would continue with the antibiotics for the full course, and see what happens. this may be something you can nip right from the beginning if it is infection related. if you see any kind of good results, try to get more than the 10 day course. knowing what I know now, that's what I would do. if it doesn't help, ask for another type antibiotic and try again. at least you will see in these early stages if PANDAS is your concern.

 

I have similar onset as you describe, from an early age, but my son is now 10 1/2 and I am going back now and exploring the PANDAS connection. I can't connect recent years to strep, and our earlier history is in the archives, so my advice is to explore this path now, so you don't have to go back and wonder.

 

Faith

[faith]

btw, just to clarify, I didn't answer the question....

no, my son did not start with vocals, that came later. It does sound like they are not exactly vocal, but ocd in nature, reassurance? not sure. I would call what you described 'verbal', not exactly vocal, as he is saying words, not sounds. but I would also think it not uncommon for a vocal to be a first tic, or at least the first noticeable one. I also think the jaw opening is a tic, I've seen that one. just because they say it hurts, it may be them giving an excuse for something they don't understand themselves whey they are doing it. and it actually does hurt or 'bother them', it's an uncomfortable urge or feeling, so in a sense, it does hurt.

 

Faith

[CarolynN]

Hello,

 

I just wanted to encourage you that you are on the right track. When my son was 3 he started with vocal tics. They progressed and at 5/6 years old they got to the point where I started him on a bunch of different supplements and changed his diet (he is highly sensitive to artificial foods MSG, food dyes, corn syrup). Anyhow, he is doing just great now. Yes he still has tics, including repeating certain words, but overall he is so much better then when he was 5. What is amazing is he is getting to the peak age of tics which is between 9-11. He is 9 1/2 right now.

 

So just keep up the investigating it will be worth all the effort and you will learn so much you will be amazed.

 

Carolyn

[worrywort]

Hello,

 

I just wanted to encourage you that you are on the right track. When my son was 3 he started with vocal tics. They progressed and at 5/6 years old they got to the point where I started him on a bunch of different supplements and changed his diet (he is highly sensitive to artificial foods MSG, food dyes, corn syrup). Anyhow, he is doing just great now. Yes he still has tics, including repeating certain words, but overall he is so much better then when he was 5. What is amazing is he is getting to the peak age of tics which is between 9-11. He is 9 1/2 right now.

 

So just keep up the investigating it will be worth all the effort and you will learn so much you will be amazed.

 

Carolyn

 

 

Carolyn,

 

That is good to hear. What supplements do you have your son taking? Also, was his talking an issue at school? I'm so afraid my son will be teased and singled out as weird.

[mar]

Yes my son 71/2 has also had the jaw/mouth opening tic. He would tell me he can't stop doing it once it starts. It lasted a couple of weeks and comes and goes depending on stress level. Thoug hhe has'nt done it in several months. He did not start with vocals. The first one I noticed was eye blinking for a couple of weeks and didn't notice it again till about a year later around the same time Oct/Nov. I can't remember if it was 3 1/2 or 4 1/2. I started seeing the tics more often at 6 1/2 -7. They weren't just during Oct/Nov. And it's weird how they started happening more often with all of his allergies getting bad. I did't think nothing of it back then since his dad would do it sometimes also. Had no clue what TS was back then. But my daughter 4 1/2 does seem like she is motor ticcing now. Don't know if it's because of all the attention I'm giving to my son. But she has no facial tics just motor tics like repeating sounds. When she has sugar/or is tired she really goes bonkers and starts making these noises and gets hyperactive. But the weird thing is that when we are around family members and she has sugar she never makes the noises just gets hyper but does not show it. It makes me wonder if it's an act around her brother to get him going and get attention from me.

 

Mar

[patty]

worrywort,

 

sorry to hear about your son's tics. and welcome.

 

Just want to add that my son also had the open mouth/jaw motor tic and it has come & go in the past. He started ticcing shorting turning 6, so he was not aware some of his tics or able to express why he did them. as he is older, he describes it as he "needs to" do a certain thing to relief the urge. also, "pain sensation" is another trigger".

 

Hang in there. there are options besides using medication. acunpuncture, NAET & craniosacral has helped my son's tics.

 

my son also has an underbite, it may also be one of the reasons that he tics.

 

Pat

[kengela]

Hi,

 

I am new to this forum. We haven't had an official diagnosis of TS for our six year old son yet. It's only been a month since symptoms began. But we are still looking for answers. Our story: five weeks ago my son had the flu (maybe H1N1) and was put on Tamiflu for five days. A week after being sick he caught a cold in class. He started with coughing and sniffing, that turned into more of a snorting. Around Christmas, he started coughing regularly, and not because he was sick. After that, it turned more into a snort with soft vocals, repeating the phrase "Is this OK" and "is that OK." He had a couple of days where it was non stop, like every few seconds. We were terrified. We took him to the ER and the on call Pediatric Neurologist gave a preliminary diagnosis of early Tourettes. He prescibed Clodomine (sp?) for the tics. We didn't fill the prescription. I was also surprised that this DR made a diagnosis without ever seeing my son, or talking to us. He only spoke on the phone with the attending DR in the ER. But he said that because my son was talking, it was Tourettes.

 

A few days later we were able to see our regular pediatrician. She said it was too early to diagnose TS and that many of her patients my son's age have transitory tics that go away after time. She didn't seem to think being vocal was a determining factor, just yet. Also, she said that the drug Tamiflu has been linked to neuropychological side effects in children, and this may be related. We would have to wait and see.

 

I am just so worried and confused. My son doesn't seem to have the classic early Tourette symptoms. Up until he was sick, we never saw any motor tics or unusual behavior. He did have a couple of weeks where he opened his jaw every now and then. But he told me it was because it hurt. The dentist looked at this mouth and said he had a couple of molars coming in and that could cause some discomfort. The only other thing that he does have is sensitivity to tags on clothing and sometimes he says his socks feel wrinkled. But other than that, there is no OCD or anxeity. I would say he tends to be an active boy, but not ADHD.

 

Does anyone have a similar story? I'm trying to figure out if this is related to the Tamiflu, or if it's PANDAS, or early TS. He mostly only whispers and talks, sometimes after snorting. Lately his phrases have been complex, like "And this OK, hos, Shos...and is that OK, shos" He also has been repeating a sound "hos" over and over. It is so scary. There have been no head jerking, eye blinking, or body movements. Once in awhile he will stand straight, like being at attention. But it doesn't happen much.

 

I should also note that I have eliminated sugar, most dairy, no food dyes or corn syrup. He takes Vitamin C, D, Omega 3, and Greenies. He hates veggies and doesn't even like fruit. The diet thing has been really hard. I also have been giving him Epsom salt baths every other night. They do seem to help control the tics a bit.

 

Thanks.

hi im pretty new to all this myself my 5 yr old daughter was dx past fall but she had subtle symptoms since before she was 2, like the sock thing your son has but on her 5th birthday she started to have facial and vocal tics,she would say please or other words she snorted for a couple days she had motor tics but they werent as noticable untail you realized these things were tics tshe wiped her fingers down the front of her shirt,now she pulls down on her shirt, i think so many comlex tics go unnoticed because they can seem so purposeful .i felt pretty guilty when i thought back to all the times that i had told her to" stop that " about wiping her fingers on her shirt but back then i only really noticed it when she was eating and i thought she was just using her shirt as a napkih. like your son she hadnt really had any of the more common symptoms but just last week she began a headjerk and blinking she is on a gluten and dairy free diet im starting at least magneisium this week Im hoping it will help the head tic ima also trying to keep her diet free of artificial anything

[sriramcs]

Hi,

 

I am new to this forum. We haven't had an official diagnosis of TS for our six year old son yet. It's only been a month since symptoms began. But we are still looking for answers. Our story: five weeks ago my son had the flu (maybe H1N1) and was put on Tamiflu for five days. A week after being sick he caught a cold in class. He started with coughing and sniffing, that turned into more of a snorting. Around Christmas, he started coughing regularly, and not because he was sick. After that, it turned more into a snort with soft vocals, repeating the phrase "Is this OK" and "is that OK." He had a couple of days where it was non stop, like every few seconds. We were terrified. We took him to the ER and the on call Pediatric Neurologist gave a preliminary diagnosis of early Tourettes. He prescibed Clodomine (sp?) for the tics. We didn't fill the prescription. I was also surprised that this DR made a diagnosis without ever seeing my son, or talking to us. He only spoke on the phone with the attending DR in the ER. But he said that because my son was talking, it was Tourettes.

 

A few days later we were able to see our regular pediatrician. She said it was too early to diagnose TS and that many of her patients my son's age have transitory tics that go away after time. She didn't seem to think being vocal was a determining factor, just yet. Also, she said that the drug Tamiflu has been linked to neuropychological side effects in children, and this may be related. We would have to wait and see.

 

I am just so worried and confused. My son doesn't seem to have the classic early Tourette symptoms. Up until he was sick, we never saw any motor tics or unusual behavior. He did have a couple of weeks where he opened his jaw every now and then. But he told me it was because it hurt. The dentist looked at this mouth and said he had a couple of molars coming in and that could cause some discomfort. The only other thing that he does have is sensitivity to tags on clothing and sometimes he says his socks feel wrinkled. But other than that, there is no OCD or anxeity. I would say he tends to be an active boy, but not ADHD.

 

Does anyone have a similar story? I'm trying to figure out if this is related to the Tamiflu, or if it's PANDAS, or early TS. He mostly only whispers and talks, sometimes after snorting. Lately his phrases have been complex, like "And this OK, hos, Shos...and is that OK, shos" He also has been repeating a sound "hos" over and over. It is so scary. There have been no head jerking, eye blinking, or body movements. Once in awhile he will stand straight, like being at attention. But it doesn't happen much.

 

I should also note that I have eliminated sugar, most dairy, no food dyes or corn syrup. He takes Vitamin C, D, Omega 3, and Greenies. He hates veggies and doesn't even like fruit. The diet thing has been really hard. I also have been giving him Epsom salt baths every other night. They do seem to help control the tics a bit.

 

Thanks.

 

My 7 year old daughter got a mutated version of the flu at the beginning of December 2014. We got her the flu mist in October but because this was a mutated version, she still got the flu.

 

The pediatrician office did a swab test for STREP from the back of the throat, it came out negative. Then, they tested for the flu inside her nostrils, it came out positive. Never had any issues with motor tics whatsoever.

 

First time I noticed it was 3 days after she got off Tamiflu at a Christmas event. It has progressed to facial grimacing as well along with the neck jerking. My wife and I are devastated. I have a video of her from November showing no symptoms or signs, she was a perfectly normal high ability child. It is too co-incidental that she gets the flu, then the Tamiflu, and has these motor tics afterwards.

 

All her abilities as far as reading, math, social skills are still top notch but she has these twitches that she can't help or control. Please help. Will this eventually go away? I am changing diet to avoid dairy, sugary foods etc. but she has NEVER had food allergies, makes this grown man want to kneel down and cry. How do I get the Tamiflu out of her system?

[Chemar]

Hi sriramcs

 

You may want to post this on our PANS forum as the parents there really have a lot of shared knowledge on illness/infection induced tics etc

 

http://latitudes.org/forums/index.php?showforum=17

[911RN]

My son started with vocal tics after viral croup at age 3.5 yo. He does not have dx of TS.