Tics in kids

This might get long. I apologize in advance.

My Timothy started having a tic in his eyes a couple of weeks ago. I took him to the dr. and I'm just having trouble sorting things out. There are several possibilities of what it could be. First of all, we took Timothy off of Benedryl. Benedryl crosses the blood/brain barrier and can have neurological s/e's. We switched him to Claritin for his allergies and things did improve. Quite noticeably.

The other thing the dr. tested was the titers for strep looking for PANDAS. Timothy's levels came back elevated. But not enough that the dr. wants to put him on antibiotics to deal with that.

The dr. also wants Timothy to head to a neurologist and start doing tests. This is where I have an issue. Honestly, I'm not big on dr's. I'm really not big on meds unless needed. Everything I've read is that 20-25% of kids (especially boys) will have transient tics at some point in childhood. I also work in special ed with other tic kids and with multiple different kids of seizure kids. Timothy matches none of what we've learned about any of the neurological problems that the dr. is suggesting. The other issue I have is the neuro they want to send Timothy too has absolutely HORRIBLE feedback online and amongst everyone I know that has dealt with him. The biggest complaint is missed diagnosis. And once again, being in special ed., I deal with a lot of people who know this dr. and nobody recommends him. There is another neuro I would be willing to see if I can't get this chased down.

So, in the meantime we thought that things were getting better. The tics were lessening going off of the benedryl. And then there was tonight. Timothy was tic-ing like crazy. He spent part of yesterday, the night, and most of the day with his grandparents. I asked him what he ate, out of curiousity. Turns out it was a total junk food/dairy fest. Last night, for dinner, they fed him 2 ice cream sundaes. His breakfast was store bought cinnamon rolls (I usually make my own out of whole wheat and less sugar). Lunch was a pizza pocket with cheese and pepperoni. No veggies. No fruit. No quality proteins. Ton of dairy.

I started googling once my mind quit reeling. There is actually quite a bit of info about food allergies and tics. The most common is dairy or wheat. I'm going to focus on the dairy because I know he over-loaded on dairy and then had a ton of tics. Also, there is a huge dairy intolerance in my family. Almost every one has it to some degree, myself included.

Here's the current plan. If anyone has some suggestions to add to it, I'll listen.

1) Eliminate dairy for 2 weeks. Timothy seriously has never eaten much of it. He won't drink milk, eat mac-n-cheese or other high dairy foods. Ice cream is it. He also probably already eats egg free. I have an egg allergy so our house is good on that one. He also has a tree nut allergy so we avoid that already.

2) If that doesn't work, I'm going to insist on a round of antibiotics to rule out PANDAS. I found this chart here: http://pandasnetwork.org/aso-titer-table/ of titer numbers that shows it all over the place. Timothy's was 307. I'm still probably going to email the dr. and ask about this.

3) If the milk makes a difference, I'm going to push to allergy test Timothy to see if there are any other food allergies. I don't look forward to this because he's my picky eater.

4) At this point, I would consider a neuro consult with a different neuro.

Does this make sense? Anyone have any other ideas?

Marissa

 

I think your plan makes sense. I was just listening to program on the CBC tonight about a doctor who was desensitizing people from food allergies, and she said that it was incredibly common for people with nut allergies to have other sensitivities to food. I always figure that it can't hurt to try when it comes to food allergies; it's pretty easy to experiment with. I know that even a small amount of junk food can really affect my boys behaviour so it makes sense to me that it could have other physical problems too.

In the meantime spend some time researching other neuros in case it doesn't improve so you have a backup plan from the bad doctor if it looks like you have to go that route. Or at least look into what kind of tests might be done and what kind of results there might be so you can "inform" the doctor a little .

 

If you are going to go dairy free, it has to be 100% including in cooked items. For some reason I am recalling that it takes a full 30 days for it to be completely out of your system, but that might be something else I am thinking of. If you suspect food allergies, it might be easier to just go get tested for them.

As for the transient tics, I'm right there with ya. My younger twin has gone through two different spells with them and is currently on. The first time he was 5ish and the eye doctor (I just happened to be going there and thought it might be a vision thing since it was a squint tic) said they were pretty common and normally go away on their own. Sure enough that one cleared up. Now we have a double tic though and it is much more obvious. He is rolling his eyes and "pecking" his head (think trying to pop the top part of your neck). Our pediatrician just wants us to wait and watch unless other issues pop up or he is starting to be bullied/self-conscious about it. We have a family history of random tic disorder though as my older brother has permanent tics, so other neurological issues are probably not present, DS just got the short end of that genetic stick.

 

I know that for dairy free it has to be 100%. Sarah had to be 100% dairy free till she was 3 years old or else we ended up screaming diarrhea. So in some ways, this is just going back to how we used to be. I've cooked a lot with soy milk in the past. We can't use the almond because Timothy has a tree nut allergy.

I have seen quite a bit of improvement today. We've been home 20 mins from school and I haven't seen the tic at all. (Timothy's sitting here doing his homework.) I also was in music class with him today (I work at the school and work with some of the kids in grade). I didn't see it. I'll keep watching all evening and see how it goes. Much better than all the tic-ing yesterday. Also much better attitude than the complete and total crying meltdown that happened out of the blue yesterday.

I want to do the allergy test this summer when Timothy can be off the claritin. He has some early spring allergies and fall allergies. Summer seems fine.

I did hear back from the dr. on pandas. He isn't going to consider it a possibility until I go see a neuro and get their blessing on it. I'm just not ready to start putting Timothy through a bunch of tests when it's possible simple antibiotics could fix it. And our dr. won't do the simple antibiotics until I agree to all the tests. Sounds like an interesting stand-off.

On the dairy-free front, today Timothy seems soooo much better than yesterday. He had a few tics when he woke up, but we've now past the 24 hour dairy free mark and I haven't seen anything. We'll wait and see how the evening goes. And the better news is that my pickiest eater likes his new snacks and this might just broaden his food outlook a bit.

Marissa

 

Bit of an update- Timothy has been virtually dairy free. I had already picked up soy cheese because my daughter could eat that when she had issues. It doesn't have lactose in it (her issue), but it does have casein in it. Timothy doesn't eat hardly any cheese but he does like a little bit on burritos so I did let him go ahead and have it.

Timothy is doing so much better. When he was on the dairy/sugar buzz from Grandma, it was 4 tics a minute. Now it's a random tic every couple of hours, maybe. He's going 1/2 days without me seeing tics. If I hadn't had seen the previous episodes, I doubt I would have picked up what he has now as a tic. It's also reduced in the size of the eye roll so it just looks like a very minor twitch once in a while.

So the plan for now is to leave him dairy free or as close as we can get to it. Then let him have a "dairy day" on a Sat. with pizza, ice cream or whatever else he might want and see if we can make the tics appear. If they suddenly reappear, I think we will have a very big piece of the puzzle. We'll also then start figuring out to negotiate things like a pizza party Timothy's class won. His teacher is absolutely wonderful and since I work at the school, in a special ed room with it's own kitchen, I know we'll come up with something completely fine for Timothy.

I'm also going to be talking to a friend who has 2 girls with food allergies that honestly are the worst I know of. One of her daughter's throats start closing at the smell of milk. I want to know who her allergist is and look at getting Timothy set up there.

I think the best part of all is that Timothy's attitude through this is really good. He's willingly trying some of the new foods and there's only been one he didn't like. He's completely okay with not having pizza as long he gets something equally fun. And he's fine with me bringing stuff from home that he likes to make in the kitchen for him at school during the pizza party. The biggest thing is, we're all able to laugh at it. At dinner tonight I told Timothy (with a straight face) that for the best interest of him health, I wasn't going to allow him to eat the broccoli and cheese sauce so he had better not ask. We all busted up laughing because Timothy hates broccoli.

Marissa

 

How did this weekend go?

 

Nice to hear the update. Glad the transition is going smoothly. How did the weekend go?

 

Well, I'm pretty convinced it's dairy. Dh is going to need to see a signed/sealed/notarized dr's report to be totally convinced it's dairy. Timothy had no tics for about 36 hours. Then I let him have some Doritos. Tics came intermittently throughout that afternoon after that.

I made dairy free chocolate chip cookies and he got some dairy free coconut milk fudge bars and Timothy really is pretty happy. I think he's figured out that the world isn't ending and life will go on pretty close to normal. The hardest part is times like today when the school lunch was pizza and he couldn't have it. I revamped a pizza lunchable with appropriate cheese for him. I know it isn't the same and he knows it isn't the same, but he also knows its the best we could do at this moment.

Marissa

 

My sisters son who was 6 last Feb started tics and they thought maybe tourettes. Then tics stopped and it moved to OCD and rages. He was then correctly diagnosed with PANDAS. Most pediatricians refuse to believe PANADS exists but when it is your kid, and you see the signs, you will realize how much the drs do not know (or refuse to listen). Her Dr is from NY (my sister lives in Chicago) so it is phone consultations. It is all about blood work and antibiotics and trying different things.

My sister is as health conscious as they come. Her whole house is gluten free due to her 2 year old having gluten issues around the age of 1. Almost all food in her house is organic.

 

I've looked at PANDAS, and the more I've looked at it the more it's not Timothy. Our dr. does believe in PANDAS and has other PANDAS patients. Timothy just simply has a small tic in his eyes that goes away with dairy going away. He has none of the OCD and rages. He hasn't had the decline in schoolwork in handwriting and math. If Timothy had more symptoms, I would push on that, but it's not there for him. If the symptoms develop later, I will revisit PANDAS.

I'm glad your sister has found success in treating her son. It's got to be a big relief to have a dr. that will listen to her and help her.

Dh and I had an interesting discussion last night. I forwarded him some articles to read. The stats are about 75% of tics are genetic. We don't fit that group. Up to 80% of tics have comorbidity with ADD, ADHD, or OCD. We don't have those. The other leading causes of tics are PANDAS, head injury, and recreational drug use. We don't have any of those either. So we are left in a small outlier group that is not one of the top causes. At that point, it doesn't seem near so weird that I've found a group of people who say that dairy causes tics in their kids and it appears dairy causes issues in Timothy. We're already outside the mainstream causes of tics statistically.

I also don't consider our problem completely solved right now. Like I've told Timothy's teacher, dairy might not be the whole puzzle, but it's obviously a huge piece of our puzzle.

Marissa

 

We fall into both the 75% and 80% category. Tics are genetic and Nathan has some OCD tendencies. Most of his OCD tendencies have cleared up, but it used to be really bad. Now that I think about it, he still gets bent out of shape if I throw something unplanned at him. I've learned to be very general with information. If he asks where we are going, shopping is the answer. If you tell him Walmart and you end up having to go to Target to find what you need, he has a less than pleasant attitude to say the least.

 

Update- I would say very definitively that Timothy has a problem with dairy. Timothy had been completely tic free for many days. We let him have "dairy day" on Saturday. Pizza, ice cream, etc. He started tic-ing that day. He really tic-ed Sunday. Today has been a lot less. It appears that we can feed Timothy dairy and make the tic appear. When we take it away, it goes away. Very definitely need a good allergist. We're going to keep writing down foods and observing tics, but even dh is convinced now that we have a very big part of our answer.

Marissa

 

I would also explore the idea that it may be an intolerance vs an allergy. One of my DD has a lactose intolerance....but it is not an allergy. She gets weepy, gassy, sensory seeking, and can vomit with too much dairy. She can have coconut ice ream or lactosefree ice cream (or a lactaid tablet).

If you have a Trader Joes or Whole Foods-- both carry dairy free pizza, lasagna, etc.

We use a lot of Coconut milk (yummy! esp. chocolate) to help both DD fat content (they are skinny skinny) since we are a low dairy house.

It was helpful to talk to a nutritionist to make sure that both DD were getting calcium/fat/Vit D they needed since there is low dairy. I do not want them to develop osteoperosis later in life due to low calcium in take in childhood.


Glad you found some answers!!!

 

I've also thought of an intolerance or a reaction vs. a true allergy. Most people don't understand the difference, but they understand allergy so that's what I use. I also remembered that last year Timothy was getting quite a few stomach aches in the summer. That's the time when we eat more ice cream.

We have no Trader Joes or Whole Foods. The closest ones are 3 hours away. I'm dependent on small specialty stores and whatever mainstream stores have decided to carry.

Marissa

 

Have you looked on Amazon?

We can order Coconut milk, gluten free, dairy -free, etc (non refridgerated) goods for much better rates than some specialty stores.

 

I'm not having trouble with the non refrigerated foods. The biggest thing is that the "cheese" Timothy likes is only at one small specialty store that's in the area and it has very narrow hours. They also have a few other things that are handy, but I can work around if needed. The frozen treats that he likes are at just a more expensive grocery store than I usually shop at. I keep those in the freezer at school so that when kids bring treats, Timothy still has something he can eat.

Though today I learned that a small frozen yogurt store by us always has at least 2 selections of dairy free products available, so that was a nice find. It's amazing what you learn at career day at school.

It is getting easier. Timothy is very willing to try things, which really helps. And I think we're just all getting used to working around it.

Marissa