What to do?

[azlsmom]

My son has been diagnosed with Tourettes since I think he was 7. He started getting tics around 4, but at the time I didn't realize they were tics. He is now 14. I actually thought he outgrew them, but they are back. He goes very long spells with no tics at all and most people don't realize his tics are tics because they are things like throat clearing and coughing. Right now he has a coughing tic and it is honestly driving me crazy. He coughs until midnight or later keeping me up making it hard to sleep. He coughs from the time he wakes up until the time he goes to bed. He hasn't seen a doctor for his tics in years. He is not interested in taking medication and honestly is still in complete denial they are tics. He argues with me that he is "coughing up snot" and asks me things like "do you think I have allergies". I am sure these are not allergies. He has had motor tics in the past that were very noticable, but hasn't had any ones in a while that are really noticable. (I notice them, but other people wouldn't.) I feel like such a shallow crappy mom to not want to be around him when he starts coughing like that. I usually can cope with it when he has them for short periods of time, but when they go on for months I start melting down and find myself distancing myself emotionally from him. I should also add that he is type 1 diabetic and has a profound learning disability. I can't help but wonder if the tourettes is some how autoimmune related. I just ordered the book Tics and Tourette’s: Breakthrough Discoveries in Natural Treatments. I am hoping it will be useful, but will admit them I am very skeptical. His tics don't seem to bother him and I don't know why I let them bother me, but they do. I am not sure if it is because I am a fixer by nature and this is just something I can't fix. I could really just use some support.

 

Teresa

[Guest]

Welcome Teresa,

 

Since your son goes for very long spells with no tics at all, I would suspect a trigger. How long are the spells that he doesn't have tics? Are they at different times of the year? Has he had strep throat recently? There are many non-medication treatments for you & your son to explore, and in my opinion it's a plus that he already knows he doesn't want to take medication. Medication isn't always the answer for everyone.

 

Have you explained tics to him? If so maybe your son is just saying that he is coughing up snot because he can sense your irritation with the tics and it's much easier to just say that. My tics are now mild enough that I don't get asked about my tics, but when people would ask me I found it easier just to say I have a cold, my arm itches, I did that, or I don't know why I did that rather than explaining it's a tic & I can't help it. I wasn't in denial, but I found it hard to explain to others, talk to others about it, and embarassing. Your son's coughing tic could be triggered by allergies. There are also many other tic triggers. Here's a list of tic triggers: http://www.latitudes.org/articles/finding_triggers.htm Also if your son senses that your irritated with his tics, he'll likely tic more. Discussion about tics often makes individuals tic more so maybe arguing about why he coughs isn't worth it since the tics don't bother him.

 

Carolyn

[azlsmom]

Welcome Teresa,

 

Since your son goes for very long spells with no tics at all, I would suspect a trigger. How long are the spells that he doesn't have tics? Are they at different times of the year? Has he had strep throat recently? There are many non-medication treatments for you & your son to explore, and in my opinion it's a plus that he already knows he doesn't want to take medication. Medication isn't always the answer for everyone.

 

Have you explained tics to him? If so maybe your son is just saying that he is coughing up snot because he can sense your irritation with the tics and it's much easier to just say that. My tics are now mild enough that I don't get asked about my tics, but when people would ask me I found it easier just to say I have a cold, my arm itches, I did that, or I don't know why I did that rather than explaining it's a tic & I can't help it. I wasn't in denial, but I found it hard to explain to others, talk to others about it, and embarassing. Your son's coughing tic could be triggered by allergies. There are also many other tic triggers. Here's a list of tic triggers: http://www.latitudes.org/articles/finding_triggers.htm Also if your son senses that your irritated with his tics, he'll likely tic more. Discussion about tics often makes individuals tic more so maybe arguing about why he coughs isn't worth it since the tics don't bother him.

 

Carolyn

 

I haven't been arguing with him about it, but I was trying to explain to him that it was a tic and not a cold. He had asked me if it was allergies. This is the first we have really talked about Tourettes. He has gone 6 months at a time tic free. Usually his tics start in the spring time, but this year they started earlier. He hasn't had strep throat recently, but I have had it twice recently. Once in March and once in April. I just finished medication for it actually. I am trying really hard not to make a big deal about it. I find myself having to just take a break sometimes from him when it gets too much. Send him to play outside for a while and try hard not to make an issue of it.

 

Teresa

[Chemar]

welcome to Latitudes, Teresa

 

Your son may well have allergies in addition to TS tics. many of our members can attest that the two can frequently go together and that an allergic cough or sniffle can become a tic. Especially if your son has this flare up of tics in the spring, that is another indication that allergies well may be a tic trigger for him too

 

also, if you have been carrying strep throat, your son may also have strep, albeit not manifesting as a sore throat. I would highly recommend that you start reading up here on PANDAS, which is an abbreviation for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. Kids who have tics related to PANDAS frequently show no sign of strep infection, yet when blood tests are done for strep antibodies, they are sky high

 

I am glad you have ordered Sheila's book, tho puzzled as to why you would be skeptical, especially if you have been reading here. Beginning natural treatments almost 7 years ago was life changing for my son, and I volunteer my time here freely to help others BECAUSE of the fact that the natural treatments WORKED! (we had tried medications for a year with disastrous results)

[Cum Passus]

Hi Teresa,

 

I'm one mom who can really relate to your anxiety. I'm a fix it mom too, and when I realized I had no control over this situation I was more anxious. Every feeling you have are ones I also felt. I also felt like a bad mom, but I found it helped me to leave the room. I came to see that I was getting mad at him a lot. Sometimes his actions were wrong, and others were me just not dealing with the TS. I can tell he is happier now that I do find ways to escape the noise. I don't snap at him like I did before. It is hard when they are teenagers, and I have to remember these are tough years anyway.

 

I sometimes would think he would not love me anymore. I was nervous that he would think I didn't love him because I had to leave the room or listen to music. It just took time, and I would rather remove myself then be upset with him for something he didn't do, and all I was doing was taking my frustration out on him. (lesser of the two evils was my thinking)

 

It is very natural to be irratated, and you being aware of that is good. If I had told people it didn't bother me I would be dishonest with myself, and don't think I would have ever healed.

I know there are people who can deal with troubles that come their way much easier, I'm just not one of them, but my husband is one of them, and I do draw strength through him.

 

I do believe the best thing you could do for yourself, and your son is fine natural ways to help him.

It will give you such a good feeling to know you are the one who is helping him. And for us fix-it-moms that is good therapy. I now see that is what I needed was a little control back, and things don't bother me like they did.

 

I do have to pray a lot, and ask God to forgive me that I did not trust He would take care of my son. Beg forgiveness that I only felt better when I saw the TS symptoms were getting better.

 

Thank you for being honest, it helps all to know our feeling are not just confined to oneself.

And I like that carolyn can give us moms a sense of how our children deal with TS, she would not be able to give that advise unless someone spoke up. THANK YOU!

 

C.P.

[azlsmom]

Thanks for your replies. Can I ask if there is anything they can do if it was PANDAS verses plain old Tourettes? I tend to think it is not PANDAS just because I don't remember him ever having strep in his life, but I'd be interested to find out about it. I am still waiting on my book to arrive. I hope it can offer some insight. From what I have read about diagnosing Tourettes it says you don't go longer than 3 months tic free. He has gone longer than 3 months and usually does. Honestly he usually has one bout of tics a year and it usually lasts 3-6 months. He is almost always tic free in the Fall. His tics usually start somewhere between March & April and last anywhere from May until the whole summer. His tics usually come on gradually and get worse and then go away gradually. There is no way I would put him on some of the meds they prescribe for Tourettes. He took clonidine when he was 7 and it totally wiped him out. He was sleeping all day and practically passing out from it. He'd just fall asleep abruptly.

 

Teresa

[faith]

hello azlsmom,

that is interesting what you describe. May I be nosey and ask what your child's other learning disability is? Sometimes the tics may just be a comorbid issue, like some kids with ADHD have nervous tics as a side issue, I don't know if it is categorized as tourettes? I think they call it stimming? Some sort of behavior they find comforting (self stimulation). You should definitely explore that allergy connection. If it is as you say with the spring, summer--possibly something bothering him at that time of year. I get what you're saying-you think the throat clear/cough is a tic, not allergy--that may be, BUT, maybe its possible the tic is just triggered by allergy, (not the cough being the reaction, but the cough being a TIC that's triggered). Don't know if I'm explaining that correctly.... If your son is asking if it could be allergies, I find that interesting. Maybe he feels something is making him feel like doing that at that time of year. I think having some allergy testing by an environmental or DAN doctor is worth exploring. (I think that is covered by insurance.)

 

Faith

[azlsmom]

I don't know what DAN stands for. How do you go about finding an environmental doctor?

 

Teresa

[Guest]

Hi Teresa,

 

DAN stands for Defeat Autism Now. They treat a lot of children/adults with autsim. However, most will also treat tics/tourettes along with similar disorders. They usually treat tics, etc. by looking for allergies, PANDAS, yeast, parasites, vitamin deficiencies, heavy metal toxicity, etc. These things are all common tic triggers that are different for each child and adult.

 

You can find an environmental doctor by going to Sheila's "Finding Medical Help" topic at this location: http://www.latitudes.org/forums/index.php?showtopic=565

 

I agree that since you say that your son only tics from March through the summer, seasonal allergies as a tic trigger really stands out. I personally am one that has many food allergies and seasonal allergies. None of them show in the usual allergy manner with sneezing, coughing, rashes, etc. except for coconuts. They display their symptoms with tics like sniffling, coughing, eye blinking, etc. For example, when I drink milk, I get a sniffling tic. When I eat foods containing blue & green food colorings, I get a coughing tic. When I eat chocolate, I get an eye blinking tic. Seasonal allergies affect me too, but it's a lot harder to connect which tree, grass, etc. causes which tics. I take pollen, dust/mold, and food allergy shots year round which help greatly. I once had very severe tics for many years and was on all kinds of meds that were horrible. I don't receive my allergy shots through a regular allergist, but instead one that specializes in environmental medicine.

 

Hope this information helps.

 

Carolyn

[lmcgill]

Hi Teresa,

 

I'm one mom who can really relate to your anxiety. I'm a fix it mom too, and when I realized I had no control over this situation I was more anxious. Every feeling you have are ones I also felt. I also felt like a bad mom, but I found it helped me to leave the room. I came to see that I was getting mad at him a lot. Sometimes his actions were wrong, and others were me just not dealing with the TS. I can tell he is happier now that I do find ways to escape the noise. I don't snap at him like I did before. It is hard when they are teenagers, and I have to remember these are tough years anyway.

 

I sometimes would think he would not love me anymore. I was nervous that he would think I didn't love him because I had to leave the room or listen to music. It just took time, and I would rather remove myself then be upset with him for something he didn't do, and all I was doing was taking my frustration out on him. (lesser of the two evils was my thinking)

 

It is very natural to be irratated, and you being aware of that is good. If I had told people it didn't bother me I would be dishonest with myself, and don't think I would have ever healed.

I know there are people who can deal with troubles that come their way much easier, I'm just not one of them, but my husband is one of them, and I do draw strength through him.

 

I do believe the best thing you could do for yourself, and your son is fine natural ways to help him.

It will give you such a good feeling to know you are the one who is helping him. And for us fix-it-moms that is good therapy. I now see that is what I needed was a little control back, and things don't bother me like they did.

 

I do have to pray a lot, and ask God to forgive me that I did not trust He would take care of my son. Beg forgiveness that I only felt better when I saw the TS symptoms were getting better.

 

Thank you for being honest, it helps all to know our feeling are not just confined to oneself.

And I like that carolyn can give us moms a sense of how our children deal with TS, she would not be able to give that advise unless someone spoke up. THANK YOU!

 

C.P.

 

Don't forget about us "fix it dads too"! It seems C.P. that I could have written your post in some paragraphs word for word. My wife is the strong one that tells me to stop obsessing about him. I was away this last week and she told me I was not allowed to ask her if he was twitching. Of course I had to ask! Our son seems to know I am upset when he tics and that bothers him and perhaps does make them worse. He is doing good now, I wish I could just accept that and relax, and perhaps it is a little better now, but I keep looking at him and expecting and preparing myself for a tic and he does nothing right now.

I have even rationalized that perhaps this is how God is trying to tell me to rely on him more, because I pray about my children and that I have strength and wisdom to be a good parent more then I ever have. But I am not sure God works that way, I have to keep telling myself that I am doing everything I can to help my son and the rest is not up to me.

Thanks for you inspirational comments.

Lenny

[Cum Passus]

Oh yes! yes! How could I forget you dads.

 

I too believe God talks to us, and one thing he revealed to me was, only one apostle stood at the foot of the cross. The others could not handle it, and left.

 

C.P.

[Chemar]

The hardest but most important lesson I learned in our TS journey was that my focus on and obsession with my son's tics was very detrimental to him

 

I too am a "fix it" personality..........but I had to train myself to work on ways to improve things for my son very much in a "behind the scenes" way

 

I have shared before that my focus on a tic that I found very scary actually IMO caused it to escalate so that my son was hospitalized. That was in the beginning when he had just started the meds and I do know now that a lot of what happened then was medication induced psychosis. However, my role in trying to find ways to stop that particular tic and its escalation was a very dramatic wake up call to me on what my son had been telling me from the start.....that his tics bothered me more than they did him and that my attention to them made it worse for him.

 

That was back in early 2000, and I truly do thank God for enabling me to yield my son fully to His care after that. It was a rollercoaster for a while, but as I practiced the self discipline needed to accept that my son had Tourette Syndrome and that he could not control his motor or vocal tics, nor his OCD...so I took the first step in making things better for both of us.

 

So, when I harp on trying to urge parents here to adopt a more accepting attitude toward their children's tics, it isnt because I dont understand where you are at. I understand painfully well!

But I understand even more what it is like for the child who has the tics and who has to additionally carry the burden that their tics are causing their parent so much worry and yes, sometimes even irritation

 

As parents we HAVE to learn to do all we can to improve the quality of life for our kids who tic, BUT we have to do it in such a way that doesnt cause the child even more stress.

Easy? NO WAY!

but

with God's help, we are able to do it

[Sydsmom]

I too have learned to just let it roll. The less I focus on them the better for everyone, especially my daughter. She picks up when I'm upset. I've also learned through the last few years that we do have good times and worse times and the worse times don't last forever and we just cruise through them. When I was so focused on them, I was a mess. Now, I try not to notice them and I know it's hard but I'm just able to do it and life goes on and she's doing well. We stay on the program and keep moving forward. Like Chemar said, I say this as a mom who used to over focus on them and have been able to let a lot go. I too pray a lot and ask God to change my heart, take my focus off of it and just continue to guide me on this path. This has caused me to become a much better mom and for that I have to be thankful.

 

Lisa