Son with vocal tics - new and need some moral support

[StevieGirl]

Hi all. Please excuse me while I ramble on and on. This is my first time posting anything about what we've been going through here.

 

So I have a 9 year old son with vocal tics. I first noticed it when he was about 4. I've mentioned it to his doctor twice since then. The first time she completely blew me off, the second time she may have made a note about it, but his tics weren't active at the appointment, so we didn't pursue anything about it, plus I was there for something unrelated.

 

Last summer (summer of 2010) his tics hit high gear. Vocal and physical. They still weren't "severe". He "hups" and snorts. And the physical tics were eyebrow wiggling and this snapping motion with his fingers. It seemed to change monthly - different sound, different motion.

 

We had a bit of a rough school year. The teacher and students were great, and I was probably more stressed than anyone else. His math went from above grade level to below grade level. I blame it on multiplication. He was fine until that came along, and he just didn't "get it".

 

We saw a natropath who recommended magnesium and fish oil (we've been taking the fish oil gummies). We had good and bad days, but nothing major.

 

Then this summer, things really tapered off. I took him off of the magnesium and fish oil, wanted to give him a break and things were fine. Tics were very minimal.

 

Then comes last Sunday. We woke up and his tics were coming in full force. Pretty much just vocal tics, with a little eyebrow wiggling. But it's just one after another after another. Constant noise. I started him on the mag and fish oil again, and also threw in some garlic pills (also recommended by natropath).

 

It's Tuesday, and things are still very active.

 

And I hate to say it, but I haven't been handling it well. School is 2 weeks away, and I'm just sick to my stomach about how his tics have progressed. I know he senses me being upset now too. I've gone as far to have a drink or two at night to take the edge of my emotions. I'm so not a drinker, maybe have a drink 4 times a year. And I'm almost ready to make a dr. appointment for some Xanax or something to help me deal. I just want to cry constantly. This isn't how I normally am. I've taken Xanax once in my life, when I had to fly (I hate flying). But how can I be strong for him when I can't even be strong for myself?

 

I've been doing too much reading - PANDAS and everything else - and I just get more hopeless. Doctor's that won't help, treatments that don't work, medications that make things worse. . . .

 

This is the time it got bad last year, so that makes me think it's some kind of allergy. The natropath said something about a corn allergy, and right now I think there is lots of activity in the corn fields, so could it be that?

 

My son was just around his friend who was just getting over strep - is it PANDAS?

 

It's consuming my every thought. Things I was looking forward to in the coming weeks no longer excite me. I just want to hold him, homeschool him, take any worry away that he might have.

 

Then I try to talk myself off the ledge. It's just a vocal tic! It's noise! Whoopee. It could be something life threatening like Down's Syndrome or Cerebal Palsy. It's just a tic.

 

That self pep talk doesn't last for long.

 

Last night my husband said he feels there's nothing he can do, so it doesn't bother him much. But in my my thinking, I won't stop until I find out what I CAN do about it. What if it IS PANDAS and he's suffering something attacking his brain? How am I going to find a doctor who will listen to me and do everything they can?

 

I'm tempted to try medications just to get him through school. But I'm not a medication type person (that's why we choose the natropath first. Plus we don't have health insurance right now). We also tried acupuncture, but that didn't help.

 

So I guess I'm just looking for a pep talk from those who have been there, or are there. Maybe if someone is in a similar boat, I could use an email buddy to vent to. No one knows what I'm dealing with, so it's hard to talk to anyone about it.

 

I pray at night that this will pass quickly. I just don't know where to go from here.

 

Thanks for listening.

[kdnc5716]

I'm sorry you have been having a hard time. It can be tough, and the "not knowing" is one of the hardest parts. Not knowing what's causing the tics, not knowing what will help, not knowing how the course will progress, not knowing where to turn. I'm new to these boards, too, and we are just beginning our journey with tics, so I'm not sure how much help I can give you, but you can always message me if you want support!

 

My son is 4.5, and he has facial tics (grimaces, etc) and some vocal tics (clucking sound with his tongue and humming). The doctor confirmed his tics, but beyond that we don't yet have a diagnosis. We started him on a good multivitamin (recommended by a kind person from this board) and took him to see an allergist. He tested allergic to 17 things, none of them foods. We are going to be treating him for the allergies through immunotherapy, Zyrtec, Nasonex, and environmental measures. I also suspect that he has food sensitivities/intolerances, and that's the next route we are going to investigate. I've been doing a lot of reading lately, too. I recently finished Sheila Rogers' book and Doris Rapp's "Is This Your Child?", as well as "Raising a Sensory Smart Child" by Biel and Peske. None of our family or friends (excluding our pediatrician) know we are going through this yet either, and it can be hard to shoulder it on my own sometimes.

 

I hope things start looking up for you soon and that your son is able to get some relief from his tics. Best of luck to you. Message me if you want support! :-)

[Chemar]

Hi

 

just a quick note as I am heading out...

 

remember, sometimes tics can be the result of more than one factor!

 

If you noticed the tics ramping up around this time last year then it is definitely worth investigating seasonal allergies.

 

I would also consider the contact with someone getting over strep to be significant.

 

If you post an intro on our PANDAS forum as well, members there may be able to point you in the direction of a PANDAS literate physician who can comprehensively evaluate your son.

 

Do consider getting Sheila's book (linked in the pinned threads at the top of this forum) as it really can be helpful in working your way through the maze!

and also take a look at our Helpful Threads up there.

 

HTH

[gators]

Hi there-

 

I just wanted to say that I totally understand where you are. My son started facial tics last summer and it was so hard to see him struggle. We tried the magnesium and the epson salt baths but I really did not see a difference. It got so bad it was interferring with his school work. We went o a nuerologist ( 2 actually) neither of which I really like but they are the only 2 pediatric nuerologists in my area. Anyway, after trying Tenex (seem to make things worse inculding anxiety) we tried Topamax. Things were great for about a month and then they came back. We went to Dr. Robbins- he is mentioned on this board. He did allergy testing and found an intolerance to dairy (my son LOVES dairy) also to dusmites and mold. So we now have him on a dairy free diet. We are in a much better place than last year but the knot in my stomach is ALWAYS there. Two weeks ago he complained that he was blinking and I just freaked out. I am so afraid it will go back to how is was. But after doing so much research on the internet so many parents say they wasted so much time waiting for things to get worse and they did not enjoy that time with their child. I try to focus on that but it is so hard. It consumes your life. Maybe you should go to an environmental doctor and ask to be allergy tested. I hope that things will settle down for you and your son.

 

Leslie

[lismom]

I just wanted to say that my sons tics didn't go away until we did allergy shots. We tried all the pills and sprays. It took a couple months but the tics did receed. You may want to investigate allergies further. If after that you don't find relief an elimination diet could help. Its frustrating because solutions and results can be time consuming, but you could make a game plan and take each process as it comes. For those of us that have gone through it all, I know the feeling of wanting to know right now how to help. But maybe decide what is the easiest and more obvious things to start with and work down the list. Diet, allergies, viruses, strep... Try not to let it overwhelm you. Kathy

[Gwen]

Me, too, Steviegirl. New here (this is my first post). Son with vocal tics. So minor in the past I thought it was just little habits. At the end of this school year they expolded and I have been reading and researching and freaking myself out, as well. And then after recently reading about PITANDS I realize there was a case of strep in his classroom towards the end of the school year, so that is causing me anxiety as well. And I don't know where to start. I've purchased the ACN book and we're trying gluten free right now and I am going to make an appointment with an environmental doctor, I guess, but then I wonder if I should have him tested with a regular allergist first, etc. etc. Sorry to say, we are in the same boat. I have to run but will post more later. Just wanted to let you know you're not alone.

[goldilox73]

Hi, there. I just read your post and have to tell you that you are NOT alone. I just posted for the first time 2 weeks ago, and I am in the EXACT same place you are emotionally. You are much further along in this process, having tried accupuncture, etc. My son's facial tic started a year and a half ago... saw neurologist, pediatrician wasn't worried, etc. We did lots of tests and ruled out PANDAS, seizures, etc. But, that tic persists. I am a very anxious person, myself, and sometimes I think I'm starting to tic like him because this is so stressful! I try SO hard not to let him see my anxiety. But, now he is starting to become aware of it, and it breaks my heart even more. He is starting kindergarten in 2 weeks. And, I cry myself to sleep at night thinking about how hard this could be for him...making friends, other kids making comments, etc. I have no idea what to expect, and that drives me insane. I'm thinking about medication myself, if for nothing else to calm my own nerves so that he doesn't see my reactions and take cues from me. We have just contacted an integrative pediatric neurologist to see if she can recommend some other, alternative treatments. I won't put my 5-yr-old on meds. But, I have to do something, you know? Just to feel like I'm working on the problem. None of my close friends have ever dealt with this, so I don't feel I can talk to them. It can be very isolating, especially late at night when you are trying to make yourself feel better about things (Gosh, I've had that same conversation about "at least it's not ____" a thousand times!). Please make sure to take GOOD care of yourself, and if that means getting a little support or talking to a professional, there's no shame in that. Our children look to us to learn to manage stress, so I'm always conscious of that. Anyway, hope it helps to know you are not alone in your struggle.

[jdmom]

Hi there,

My son is 10 and his tics started at age 6. I completely fell apart when this started. I went on anti-anxiety/depression meds for about a year. Basically, I just couldn't accept that this was happening to my sweet boy and couldn't get past the fear of what it might all lead to. I was freaking out constantly the first 2 years (but I was very good at hiding it at work and in general). I have to say, 4 years later, I am doing much much much better.

 

My son's tics are fairly mild (neck/shoulder twitches, eye rolling, that sort of thing. and vocal are typically a grunting/throat clearing thing.) The thing I've noticed is just that they come and they go, but they never go away completely. They come in spurts at times but we just went for about a 5 month stretch on the down-low. Now he's doing an eyeball roll which started a couple weeks ago. Since he started school this week, we spoke to his teacher about it to make sure she wouldn't think he was doing this out of a bad attitude. We have told all his teachers about it right away. They are always like, oh okay, thanks and it's no big deal. I can tell you, my son started this stuff in kindergarten and he's in 5th grade now. He has NEVER been teased about it or even asked about it. He is not bothered by the tics. My son is a very bright and creative child. He is doing very well in school academically and socially. He plays soccer and the tics have not impacted his childhood in any way.

 

The most important thing, and this is the hardest thing for me....try not to make a big deal about it or show it's bothering you. Ignore them as best you can. Our neurologist said, try to leave the room if it's bothering you. Sometimes I have to do that when things flair up and then there are those good stretches and you start to relax a bit. Over time, you will see that they come and go and it's not necessarily getting worse. My son's are not getting worse and for that I am thankful.

 

Another thing, we do not allow him to have MSG or red dye and we give him magnesium every day. We feel it's important to stay vigilant with these things, even when he's doing well. Personally, I think kids with tics must have very sensitive brain chemistry and it's important to keep things balanced. I would like to do allergy testing but we haven't tried it. It's hard to get medical doctors or even the neurologist to do anything they consider alternative.

 

When this all started, I was soooo scared to tell anyone about it. I think because telling about it would make it more "real". I opened up to a friend and almost fell off my chair because she told me her son has the same thing. I felt God's presence right then and I'm not even a religious person. What are the odds the one person I tell has the same thing with her son??? Her son is 18 years old and still has tics. But you know what, he is a GREAT kid. Tons of friends, star baseball player, has had the same amazing girlfriend since the 8th grade and he is a very HAPPY person.

 

So while none of us would ever ask for this challenge, just know you and your son will be okay. It will take time to accept it. Don't rush to put him on meds. My son nor my friend's son has ever been on meds and they are doing just fine.

 

This forum is great for talking to other parents. Some are at the point you're at, others have moved on, we all know how emotially challenging it is.

 

Hang in there!

[StevieGirl]

First off, I want to thank everyone here who posted! It took me a while to come back, because I had to step away from the reading. I was reading myself into a frenzy (which is so easy to do now with the internet!)

 

So over a week has gone by and things were pretty much the same. It was me I was trying to change during that time, not him. I had to just chill, basically.

 

I made an appointment with his natropath, which was today. All the way there he was ticcing quite a bit. Pretty much all vocal. The other appointments his tics weren't that noticeable, so I was glad she would finally see what things are like at their worst.

 

His test showed a strong reaction to Goldenrod and Ragweed - which are insane right now. Also some reaction to grass and pine. Food reactions are corn and wheat - but just slight. She pays attention to the allergies going on at certain times, so when I told her this all started up a little over 2 weeks ago, she just smiled and nodded.

 

We were taking garlic, fish oil and magnesium. She did her little test (hard to explain if you've never been to a natropath), but the test showed the garlic and fish oil were no longer effective, so she gave us some pills called MyoCalm P.M. It's a natural supplement (can be found online). I just gave him one and I have to say it's been pretty quiet around here!

 

Fingers crossed.

 

We're coming up with a plan of what he can tell his classmates about his noises. I figured we would tell them he has allergies. While some kids sneeze, he makes other noises.

 

Again, thank you all for listening and giving your advice. I'm sure this isn't the last time I'm going to need you all.

Edited September 2, 2011 by StevieGirl

[StevieGirl]

He is starting kindergarten in 2 weeks. And, I cry myself to sleep at night thinking about how hard this could be for him...making friends, other kids making comments, etc. I have no idea what to expect, and that drives me insane.

 

What I found when this all started was honesty was the best policy. I had my son watch youtube videos of other kids with tics. Right away, he realized he wasn't alone.

 

As far as school goes, I talked with his teacher last year, and they came up with a plan to tell the other kids about what was going on. That he has vocal tics, and he can't help it. That holding them back would be like holding back a sneeze.

 

At kindergarten, the kids might not get it. But at such a young age, kids really are accepting. My son has lots of great friends, and they just know that he makes some noises - that's just him!

 

Sure, when middle school rolls around my school fears might be worse. But I'm still holding onto the hope that he's going to grow out of this. *hugs*

[cloudy]

Hi

Just want to pass my best wishes onto you.

As you know it waxes and it wanes - it will get better!

JDmom - I so know what you were going through - I too had to go onto the Anxiety medication just to help me get through the day! Happily, I too am off then now and just taking each day as it comes.

They are still our perfect children.