Bad tics

[shelly76]

Supermom 13 - Yes, he started non-stop eye blinking 4 years ago. It lasted 6 months (pediatrician said it was transient at the time and that it would go away), and then subsided... more tics came and went.  Fast forward 4 years later and he's been diagnosed with Tourette Syndrome. His tics have been very difficult the last 7 months and nothing has really helped. He was diagnosed with Autism shortly after the tics started years ago... I didn't believe it because he didn't have any symptoms of autism.  The neurologist that we recently visited said it seemed likely he has ADHD as well. Completely normal child until he developed those dang tics. That's why I always thought it was PANDAS, but Cunningham Panel dismissed it. The naturopath diagnosed him with a Mitochondrial Deficiency but I haven't been able to follow that much. I can't even get her to respond without an appointment and my insurance is starting to deny all claims for anything alternative now. So, I'm winging it on my own. Thank goodness Chldren's offers assistance.

[supermom13]

i have a pandas question, did he have alot of strep/ ear infections close to when the tics started?  Do you also treat the autism? 

i never heard of Mitochondrial Deficiency, what are the symptoms?

 

[shelly76]

esonr - Great, thank you. That's a cute label.... love it!  I'm okay with spending a bit if it works!

You know, he has grown three feet sizes since last September. That might be something to consider. I do notice when he eats, he tics more or when he tilts his head back, and obviously screen time. There's so many ways you can go and all of them are long and costly. I wish I had better insurance.

The tics never stopped completely. They changed frequently and got worse for a few days and then better back then, but never completely went away. Now, new tics are constantly being introduced on top of the old ones and there's no break- no relief.... not for the last 7 months, except for a week or two or a day or two somewhere in there.

[shelly76]

Supermom - I know he had a few positive strep tests when he was little, but we didn't do any around the time the tics started unfortunately. We just started testing the last couple years.

As far as the autism, he gets some support at school- OT, speech, and a connections group with other kiddos on the spectrum.

I'm very new to the mito diagnosis, but the doc was certain he had it even before testing because he was so fatigued. I guess low muscle tone, fatigue, and many other things. But the neurologist said no way to that diagnosis. So, who to believe, you know?

[shelly76]

So, we tried a magnesium lotion rub this weekend and it was a terrible, restless night for my son. I found him sleeping on the floor the next morning. His tics were so bad. I have no idea if it was worse from the magnesium or if it's just bad and getting worse as tics do.

I read that magnesium can help increase dopamine levels in the brain, but if one has high dopamine levels, then can I assume magnesium would make it worse, correct or incorrect? He had a genetic test done at the naturopath clinic and it showed high dopamine levels and defects that slowed the production of dopamine or faulty receptors.

Also, I'm starting to wonder if some of the tics might be myoclonic? The neurologist didn't think so, but he only glanced at my son and my son wasn't doing the shock-like tic.  They normally occur when he's laying down (not sleeping or getting sleepy), or if he's sitting still. He also does this arm spasm thing. I wish the doc had time to evaluate his tics. Maybe these are just normal tics, but maybe not.

[edsonr]

I'm sorry to hear that it made your son's tics worse.  Do you do any other mag supplementing, like epsom salts or anything else? 

What is myoclonic?

[shelly76]

We did epsom salts last week too. There wasn't a negative reaction to those, just no reaction. So, I'm not sure if it was the magnesium or a flare. I tried it on myself also and didn't feel well. It's Kirkland brand... don't know... I don't react well to magnesium.

Myoclonic tics, twitches, seizures... not exactly sure, but they seem to be in a category outside of TS. I just wish a doctor could help us. We have an appt tomorrow with his pediatrician, but I"m not sure she's going to be much help.

[edsonr]

Thanks for that info.  Well keep us updated on how it goes with the pediatrician, I know how you feel because ours wasn't much help either. 

[shelly76]

Thank you!  We will do another strep test since he's so bad. I'll let you know!

[mert]

Hi Shelly76,

I really wish I had an answer for you, and I am also pretty new to all those. My DD usually tics more when eating (not %100 consistent though) I am not a big fun of medication, but in your case while the effects of puberty is reversed you may try some alternatives. Unfortunately it looks like this is also hit and miss with some possible side effects. 

We all understand that it's hard on you and try to gather around all the support you can. 

[shelly76]

Hi Mert,

Thanks for responding. For a bit, my son would have phonic tics while eating-- usually the grunting or giggle sound, but that's passed like these odd tics do. Now they are most severe when he's lying down or sitting up and having to be still (like in a movie) or in bed. As long as he's free to move around on his yoga ball or walking, etc, the more disturbing tics aren't as visible. Obviously, this makes school tough. At the moment, he has about 5-8 different tics going on. I can't help but wonder if his under-bite has some sort of affect on these tics being that lying down exasperates the shock-like tic he has. The minute you think you might understand, they change. I'm still looking for a new multi-vitamin, but because he's so sensitive to everything, I'm not sure which direction to go.

[Chemar]

Hi Shelly

I noticed you mentioned the underbite issue and wonder if you have looked into the tics that some kids have caused by TMJ problems. There are some threads on the forum related to a mouthpiece  that seems to help some kids who have TMJ related tics. Try doing a forum search for keywords like TMJ mouthpiece tics or transmandibular joint and see if some of those posts sound like what you might be seeing with your child,

[shelly76]

Hi Chemar,

I have heard of this and have seen some amazing videos on it.... I will do some searching here too. I would be very interested in the cost and procedure.  My son is a chewer and had a binky way too long. His dentist was concerned at his jaw development at one point and mentioned we might need to do some spacers or something in his mouth. It hasn't been discussed in a while, but this has me thinking. 

[edsonr]

@shelly76 How is your son doing?  Any good news or discoveries?

[MLee]

@shelly76 

How are you doing? We are in the PNW as well. What doctors have you gone to...I'm just always looking for new options.

This is such a difficult journey for our kids and us trying to help them. I am always hopeful that the next doctor will help and then I'm disappointed.

I'm never sure when people say their doctors helped and prescribed different things to whom are they going? MD, ND, psychiatrist, DO, etc? Where do people find the most success?