Update

[Lynn777]

Well, my husband and I took my son to the neurologist yesterday. I have to say, we almost canceled because we figured it would just be frustrating, but it turned out okay. Not that we know anymore now then we knew before the appointment, but the doctor was very nice, took a lot of time with us, answered all our questions and didn’t dismiss us when we brought up diet and supplements. Oddly, she diagnosed him as having a chronic tic disorder, which I thought was strange based on the fact that he has multiple motor and one vocal tic. However, she said it was definitely too soon to diagnose tourettes and she viewed his tics as mild (especially the vocal one). So, she thinks he has more of a motor tic issue at this point. She said to keep an eye on them, but not to let them control our lives and told us that if they aren’t bothering him to ignore them and continue treating him the same way we did before the tics ever started. She did not recommend any medication and told us that she would only prescribe medication if the tics or any associated conditions were severely complicating his life. She also said, she never treats based on how it’s affecting the parents, only the child.

 

Lastly, she highly recommended we continue the cognitive/play therapy and if the tics/ocd issues continue to progress she also recommends biofeedback when he’s a little older. She said if we feel the diet and supplements are working then continue with it. If we want a clearer picture if the tics are triggered by food or if it’s just the natural waxing/waning then we should do the elimination diet and then reintroduce the foods and see what happens.

 

I’m curious if anyone has any comments on biofeedback? I think I’ll have to research that a bit more for the future.

 

Thanks!

Lynn

Edited June 3, 2010 by Lynn777

[deby]

Well, my husband and I took my son to the neurologist yesterday. I have to say, we almost canceled because we figured it would just be frustrating, but it turned out okay. Not that we know anymore now then we knew before the appointment, but the doctor was very nice, took a lot of time with us, answered all our questions and didn’t dismiss us when we brought up diet and supplements. Oddly, she diagnosed him as having a chronic tic disorder, which I thought was strange based on the fact that he has multiple motor and one vocal tic. However, she said it was definitely too soon to diagnose tourettes and she viewed his tics as mild (especially the vocal one). So, she thinks he has more of a motor tic issue at this point. She said to keep an eye on them, but not to let them control our lives and told us that if they aren’t bothering him to ignore them and continue treating him the same way we did before the tics ever started. She did not recommend any medication and told us that she would only prescribe medication if the tics or any associated conditions were severely complicating his life. She also said, she never treats based on how it’s affecting the parents, only the child.

 

Lastly, she highly recommended we continue the cognitive/play therapy and if the tics/ocd issues continue to progress she also recommends biofeedback when he’s a little older. She said if we feel the diet and supplements are working then continue with it. If we want a clearer picture if the tics are triggered by food or if it’s just the natural waxing/waning then we should do the elimination diet and then reintroduce the foods and see what happens.

 

I’m curious if anyone has any comments on biofeedback? I think I’ll have to research that a bit more for the future.

 

Thanks!

Lynn

 

Hi Lynn,

Did you have your son tested for ASO titers/Anti Dnase?

I've tested my son and all those tests become extremely high. He didn't have any sign of strep at all, and yet looks like he had/has some sort of infection.

We started antibiotic on Sunday and (I don't want to open my mouth and talk too much) he is doing better. His tics are much less in frequency and power.

His behavior is more relaxed and less nervous.

I just wanted to point this to you, maybe he has an infection that causes his tics.

If you want i can give you the list of the blood tests that I did.

I also took my son to a neurologist and the old school doctors don't believe in infections causing tics, but there are more and more kids that are been identified as PANDAS, and antibiotic and other methods really cured them.

Deby

[Chemar]

glad to hear you had an open minded neurologist Lynn

 

My son has had tremendous benefit from biofeedback ( which is not the same as NEUROfeedback !!) but it wasnt used for the tics per se, rather as a detox and corrective remedy for imbalances that he tested to.

 

Did you discuss PANDAS etc with the neuro? have you considered running any tests to be sure you arent dealing with strep or other infection, allergies etc

 

 

Deby

that is a relief to hear you got a clear result from the titre tests and that you child is showing improvement on the abx

Hope things keep getting better

[deby]

glad to hear you had an open minded neurologist Lynn

 

My son has had tremendous benefit from biofeedback ( which is not the same as NEUROfeedback !!) but it wasnt used for the tics per se, rather as a detox and corrective remedy for imbalances that he tested to.

 

Did you discuss PANDAS etc with the neuro? have you considered running any tests to be sure you arent dealing with strep or other infection, allergies etc

 

 

Deby

that is a relief to hear you got a clear result from the titre tests and that you child is showing improvement on the abx

Hope things keep getting better

 

Thank you Cheri, still the way is very long, some days he seems better, and then again he has a burst of tics. Overall looks like he is doing better, but it is too soon to talk.He is with abx only 5 days, hopefully it will help.

Thank you again!

[Lynn777]

Hi Deby & Cheri,

 

I have not had my son tested for PANDAS yet. Honestly I'm a little overwhelmed and confused by the whole concept and I don't want to give my son a bunch of antibiotic therapy if he doesn't need it. I read that at any given time 30% of school age children will test positive or high titers! It's not that I don't believe PANDAS a real condition, I just wonder about it...

 

Do you think I should just have him tested? I didn't mention it to the neurologist, but I'm planning on taking him to an environmental MD after vacation, so maybe I should bring it up to him...

 

Deby, sure I'd love to know the tests you ran on your son and am happy to hear he seems to be doing better!

 

Thanks,

 

~Lynn

[deby]

Hi Deby & Cheri,

 

I have not had my son tested for PANDAS yet. Honestly I'm a little overwhelmed and confused by the whole concept and I don't want to give my son a bunch of antibiotic therapy if he doesn't need it. I read that at any given time 30% of school age children will test positive or high titers! It's not that I don't believe PANDAS a real condition, I just wonder about it...

 

Do you think I should just have him tested? I didn't mention it to the neurologist, but I'm planning on taking him to an environmental MD after vacation, so maybe I should bring it up to him...

 

Deby, sure I'd love to know the tests you ran on your son and am happy to hear he seems to be doing better!

 

Thanks,

 

~Lynn

 

Hi Lynn,

 

We tested for ASO,ANTI DNASE-b,mycplasma,Lyme and others, but those are the basics.

I'm not sure either about Pandas. My son titers became high, and we run throat culture in the family and some of us had positive for strep.

So we definitely had it in the family. Does the strep the reason for my son's tics? I have no idea.

He is on abs, in the beginning i tlooked like he improved, then we switch abs, now it looks like he is going downhill. Is it bcause of the abs, or is it a wax and wane process?

It is really hard to tell. Nobody knows.

It is really frustrating.

 

Deby

[Chemar]

Deby

 

why did you switch antibiotics if the first was working?

[deby]

Deby

 

why did you switch antibiotics if the first was working?

 

Dear Cheri,

Dr T decided to switch to Azithromycin , looks like there is more success with that antibiotic. What I understand it could be that yesterday he had an Herxheimer Reaction. Today it looks like he is a little better than yesterday.

In the other hand, it could be that all those abs are not working, and it just that he has some allergy to something, that some days he is better than other days.

Everything could be, nothing is clear at this point.

We are trying different directions, we don't discard pandas specially because it actually showed his titers extremely high and my other son has a positive strep culture.

Now my problem is how i find if he has allergies. I think I'm going to start eliminating one thing at the time, maybe I'll start with dairy that seems that lots of kids are sensitive.

Thank you for you interest!!!

Deby