New, somewhat overwhelmed and a question

[Kareninminn]

Hi,

 

My 8 year old son has a probable Tourette's diagnosis. We saw a neuro who said tics or Tourette's and gave us his definition and it's clearly Tourette's. He has multiple vocal and motor tics, throat clearing, had movement, touching his nostrils and ears, rubbing his tear ducts. Once he let out a scream and was confused as to why he did that. An interesting thing I've noticed is most tics seem bilateral, I don't know if that's typical. I've read about PANDAS as he does have a strep history but I'm seeing very little there that matches my son. We were in the process of evaluating him at school for several conditions that may be related to Tourette's as well some other things that probably isn't. It started with throat clearing off and on which I assumed was allergies. In retrospect I think he had some motor tics too but I didn't make the connection.

 

It took little time for me to see that I wanted to go a more natural route in treating this, the pharmaceutical concern me. A friend whose son has Tourette's sent me a list of vitamins and that seems consistent with what I've read here. Right now all we're doing is increase in magnesium and B6 through food, mostly cashews. I have Natural Treatment for Tics and Tourette's

and am working my way through it. As soon as I can get him able to take pills we'll start adding vitamins.

 

My question comes with a tic, he seems to be gagging on foods lately. More on foods he's averse too but even foods he likes. After that he refuses to eat. In the past few months he seems to have gotten pickier and pickier about what he eats. Is this Tourette's related? While he's still eating he's eating less and less and we're worried about what will happen if this continues.

 

Thank you

Edited December 1, 2011 by Kareninminn

[rowingmom]

Check the PANDAS/PITANDS forum. I think several of the parents there have children with food aversion difficulties which seem to be OCD related.

Edited November 26, 2011 by rowingmom

[Chemar]

Hi and welcome

Food aversion can also be a result of the OCD that is sometimes co-morbid with Tourette Syndrome as well. Another important factor to consider is that many kids with neurological problems also have sensory integration dysfunction aka disorder, and so the texture and tastes of some foods can be what triggers the aversion.

a good website and book for this is The Out Of Sync Child

 

What about PANDAS made you think your child does not fit the criteria, especially with the history of strep you say she has?

Edited December 1, 2011 by Chemar
corrtecting link

[Kareninminn]

Hi and welcome

Food aversion can also be a result of the OCD that is sometimes co-morbid with Tourette Syndrome as well. Another important factor to consider is that many kids with neurological problems also have sensory integration dysfunction aka disorder, and so the texture and tastes of some foods can be what triggers the aversion.

a good website and book for this is The Out Of Sync Child

 

What about PANDAS made you think your child does not fit the criteria, especially with the history of strep you say she has?

 

Thanks so much for the welcome and feedback!

 

I read this fact sheet on PANDAs and just don't see him in it.

 

http://www.ocfoundat...act%20Sheet.pdf

 

He had confirmed strep several times in kindergarten, none in first grade when I started seeing symptoms of Tourette's (not that he couldn't have, he's often asymptomatic with strep) and once so far this year. I did notice an increase in throat clearing after the strep but some other tics started after school. I noticed no improvement after antibiotics. In the past few weeks things have really kicked into high gear and he seems to be cycling through a lot of tics. I'm not totally ruling out PANDAS but the fact sheet here doesn't seem to match up much.

 

I have wondered about a sensory disorder as he's always been somewhat texture and light sensitive but the gagging thing is new. It's happening with foods he likes as well as those he doesn't. It's someone that has just started within the last month.

 

I'll look into PANDAS more. I think I've found a good doctor and hopefully he'll be aware of it. He's known for integrative, complementary medicine. I'm just not getting that feeling. This whole thing is so overwhelming.

Edited December 1, 2011 by Chemar

[dcmom]

Karen -

 

So sorry for what you are going through.

 

Fear of choking on food is a big pandas symptom- as far as actually choking/ gagging- I do think there has been some discussion on that on the pandas forum too- you may want to search for it.

 

I have a picky eater (age 8) and a healthy eater (age 11) who both almost stop eating at all when they have pandas episodes. Here are things I do: keep small bite snacks available on counter all day, pack lunches with several appealing small bite options, let them have dinner in front of TV and prepare a tray of food for them (cheese& crackers, fruit, tea sandwiches, cubes of meat and cheese, veggies and dip, etc), snack on smoothies (ice, frozen fruit, kefir, fruit sorbet, protein powder). We really tried to never make food or eating a battle, I figured as soon as it went there we were done for. A big issue with my kids was making decisions, so I started just setting out a meal of lots of small bite choices- it seemed to make things a bit easier. I tried to bake a lot, and add whole wheat flour, flax and veggies to my baking. Thankfully these issues have subsided with pandas treatment.

 

One more thing- both of my girls had to learn to swallow pills, and did so with Probiotic pearls. They are tiny pearls that go down REALLY easy- once they mastered this they moved on quickly to bigger pills.

 

Hang in there- this is the worst time- when you have a good team of docs, support network of parents (who know what you are going through) and a gameplan in place things get easier- I would think this is true of any disorder/ illness.

[Kareninminn]

Karen -

 

So sorry for what you are going through.

 

Fear of choking on food is a big pandas symptom- as far as actually choking/ gagging- I do think there has been some discussion on that on the pandas forum too- you may want to search for it.

 

I have a picky eater (age 8) and a healthy eater (age 11) who both almost stop eating at all when they have pandas episodes. Here are things I do: keep small bite snacks available on counter all day, pack lunches with several appealing small bite options, let them have dinner in front of TV and prepare a tray of food for them (cheese& crackers, fruit, tea sandwiches, cubes of meat and cheese, veggies and dip, etc), snack on smoothies (ice, frozen fruit, kefir, fruit sorbet, protein powder). We really tried to never make food or eating a battle, I figured as soon as it went there we were done for. A big issue with my kids was making decisions, so I started just setting out a meal of lots of small bite choices- it seemed to make things a bit easier. I tried to bake a lot, and add whole wheat flour, flax and veggies to my baking. Thankfully these issues have subsided with pandas treatment.

 

One more thing- both of my girls had to learn to swallow pills, and did so with Probiotic pearls. They are tiny pearls that go down REALLY easy- once they mastered this they moved on quickly to bigger pills.

 

Hang in there- this is the worst time- when you have a good team of docs, support network of parents (who know what you are going through) and a gameplan in place things get easier- I would think this is true of any disorder/ illness.

 

Thanks. The pearls are a great idea. A friend mentioned tic tacs and, since I already told him we'd use tic tacs to learn pills, I'll try those first but otherwise we'll go with the pearls. He only had to spit out his food into a napkin once over Thanksgiving, which was pretty good. He does have a spitting tic that comes and goes, maybe they're interrelated. I need to get better at taking this a day at a time. For the last month it seems like every day brings us a new surprise. I did get paperwork from a physician that looks like a good fit so we can start that, that's good.

[guy123]

Hi and welcome

Food aversion can also be a result of the OCD that is sometimes co-morbid with Tourette Syndrome as well. Another important factor to consider is that many kids with neurological problems also have sensory integration dysfunction aka disorder, and so the texture and tastes of some foods can be what triggers the aversion.

a good website and book for this is The Out Of Sync Child

 

What about PANDAS made you think your child does not fit the criteria, especially with the history of strep you say she has?

 

Your link doesn't work. There's an extra http:// in it.

[Chemar]

thanks Guy

it is all working correctly now