Tic came out of nowhere, and getting worse

[Malke]

Hi,

 

I'm visiting from the PANDAS board. One of the reasons we suspected PANDAS this January is that dd5 developed a tic, out of nowhere. It started with opening her mouth, licking her lips and then progressed to chin to chest, stretching neck, a couple lip contortion variations, and clacking her teeth a couple times.

 

Since we don't have an obvious strep event to point to we're not 100% sure it's PANDAS, but to me its obviously an neurological autoimmune issue of some sort.

 

I've read through some of the information for newcomers on this forum and I still need your help. Over a year ago (pre tic) to address some sensory issues I started dd on a diet free of gluten, soy, casein, corn and yeast and then started addressing yeast issues in the gut with the help of a DAN in July 2010. We've been doing all the things that have been suggested on this board in terms of diets and supplements.

 

We're still assuming PANDAS right now, even though we don't have a clear strep event to point to. DD is on 200mg Azithromicin per day as well as 2 doses of Ibuprophen, and we are working up to a full dose of Enhansa and have seen only improvements on this supplement. We also just started working with an integrative D.O. who ordered some allergy tests (a combined IgA and IgE -- I can't explain why there was no IgG). I'm wondering if there is anything else I should be looking into?

 

I want to be clear that the tic started before the abx or any new supplements. I thought maybe her issues were yeast related when they started to snowball in December, but then we got a follow-up OAT done in January and it showed great improvements with the yeast issue and with her gut in general. So, I'm pretty sure the tic is not yeast related.

 

Any thoughts or resources or next steps would be greatly appreciated.

 

Gratefully,

Malke

Edited March 15, 2011 by Malke

[samra]

My eight years old son had minor tics, which were usually lasted a week or two. About a month ago, he had strep infection and his tics flared tremendously. He is making noises frequently, like every 3-4 seconds. I took him to neourolgist and we did talk about PANDAS. He said 25% of the kids have tics and it may go away after a while.

I have been reading on this website and totaly confused about what to do.

Where to start?

Please help!

[Malke]

My eight years old son had minor tics, which were usually lasted a week or two. About a month ago, he had strep infection and his tics flared tremendously. He is making noises frequently, like every 3-4 seconds. I took him to neourolgist and we did talk about PANDAS. He said 25% of the kids have tics and it may go away after a while.

I have been reading on this website and totaly confused about what to do.

Where to start?

Please help!

 

Samra,

 

Have you been over to the ACN PANDAS forum to ask this question? I'll give you what I know, but you may want to see what other people say as well.

 

Did your son get antibotics for his strep? Does he have any other symptoms? Has he had a sharp rise in OCD issues, is he spacey or hyper all of a sudden, does he seem defiant or have rages over small things?

 

Since you have a documented case of strep, it's likely that there is PANDAS involved and I personally wouldn't wait around to see if the tics went away.

 

Go to http://www.webpediatrics.com/pandas.html or http://www.pandasresourcenetwork.org/home.html and see if this looks like your kid.

 

My dd had all sorts of PANDAS-like symptoms that have all improved on abx and ibuprophen -- all except her tic. So, if your son only has a tic, perhaps it's something else?

 

However, like I said, since you have a clear strep event where things got worse, then my opinion is to definitely look into PANDAS.

 

I hope this is helpful, and please do go over to the PANDAS forum and see what the others have to say.

 

Best,

Malke

[Cj60]

Hi Malke,

It sounds like you've probably done far more than I have in addressing your child's tics. The only thing I don't see you reference is a good, heavy duty, clean multivitamin. Is this a regular part of your daughter's supplementation?

 

Considering you're on such a rigorous diet, I'd even be hesitant to suggest that some new or unusual food has brought about the sudden tics. But that is always a possiblity. Or maybe it's some other type of allergen. Mold? It's almost spring; maybe something has just presented itself into your daughter's environment over the past couple of weeks? Has she been tested for non-food allergens?

 

I hope your brainstorming yields some direction for you. Good luck.

 

Chris

[Malke]

Hi Malke,

It sounds like you've probably done far more than I have in addressing your child's tics. The only thing I don't see you reference is a good, heavy duty, clean multivitamin. Is this a regular part of your daughter's supplementation?

 

Considering you're on such a rigorous diet, I'd even be hesitant to suggest that some new or unusual food has brought about the sudden tics. But that is always a possiblity. Or maybe it's some other type of allergen. Mold? It's almost spring; maybe something has just presented itself into your daughter's environment over the past couple of weeks? Has she been tested for non-food allergens?

 

I hope your brainstorming yields some direction for you. Good luck.

 

Chris

Thanks Chris! Yes, we're on a DAN protocol to address nutritional deficiencies uncovered by an Organic Acids Test (OAT) as well as the yeast picture it gave us. As part of that is a great multi with extra B6 called SuperNuThera. Kirkman's Laboratories has a great line of non-allergenic supplements.

 

We have not done any non-food allergy testing. Our new Integrative D.O. seems to think ss present very much as a 'typical' food allergies kid. So, there very well may be more food we haven't yet uncovered -- we did an blood draw for an IgE/IgA test but it'll be a few weeks before we find out...feeling impatient right now, lol!

 

I keep wondering if there's any new food I've introduced without realizing it. It's likely that the food we started feeding her regularly while her gut was healing may be causing trouble now that we're seeing with the tic and the PANDAS-like symptoms. It could be even the most benign thing like rice, which she has every day, that has turned into an allergen now. I can imagine a rotation diet in our future (4 days on certain foods and then time off those foods)...uck. But, you know, if it brings relief and, most importantly, HEALING for my daughter, than it'll be worth it.

 

Thanks for your thoughts -- that's why I like these forums, it's a great way to think things through.

 

Malke

[samra]

Malke,

Thank you so much for your response. As soon as they confirmed the strep, he had penicilin shot the same day. I have been reading about PANDAS but didn't see any conclusive treatment methods other then what the neorologist told me -plasma exchange. He is defient and very argumentative in general. The only difference between now and prior to strep is his more frequent vocal tics.

I really appreciate your response. I feel so helpless and sad. I guess this is the normal reaction of parents. Just sharing information with people who has same or similar problems helps.

Thank you again.

 

My eight years old son had minor tics, which were usually lasted a week or two. About a month ago, he had strep infection and his tics flared tremendously. He is making noises frequently, like every 3-4 seconds. I took him to neourolgist and we did talk about PANDAS. He said 25% of the kids have tics and it may go away after a while.

I have been reading on this website and totaly confused about what to do.

Where to start?

Please help!

 

Samra,

 

Have you been over to the ACN PANDAS forum to ask this question? I'll give you what I know, but you may want to see what other people say as well.

 

Did your son get antibotics for his strep? Does he have any other symptoms? Has he had a sharp rise in OCD issues, is he spacey or hyper all of a sudden, does he seem defiant or have rages over small things?

 

Since you have a documented case of strep, it's likely that there is PANDAS involved and I personally wouldn't wait around to see if the tics went away.

 

Go to http://www.webpediatrics.com/pandas.html or http://www.pandasresourcenetwork.org/home.html and see if this looks like your kid.

 

My dd had all sorts of PANDAS-like symptoms that have all improved on abx and ibuprophen -- all except her tic. So, if your son only has a tic, perhaps it's something else?

 

However, like I said, since you have a clear strep event where things got worse, then my opinion is to definitely look into PANDAS.

 

I hope this is helpful, and please do go over to the PANDAS forum and see what the others have to say.

 

Best,

Malke