Really Confused

[cara615]

What does it tell you if your child tested positive for STREP but was asymptomatic. Does that mean he is a carrier? The only thing that made me get him tested for STREP was that his tics were increasing steadily over a period of a week. But if he is a carrier wouldn't the test be positive anyway? Should I not be treating with antibiotics?

 

I am really confused.

 

There was a time over the summer that I had his throat tested and he was neg for STREP. So I have no idea.

 

All I know is that he is on day 3 of amoxicillan and the tics are still way higher than baseline. Baseline for us was untedectable ticcing. No one would ever know he had tics.

 

We are waiting on blood test results to see if it could be PANDAS related but I am just completely lost as what to think at this point.

[nicklemama]

That's a common story around here, asymptomatic but positive for strep. I do not believe it means carrier. Your child isn't truly asymptomatic. The tics are your child's symptoms.

Edited November 16, 2013 by nicklemama

[cara615]

So should we have treated with abx?

[nicklemama]

Absolutely.

[cara615]

Do you think he will return to baseline after the abx? We ar eon day 3 and its still bad.

[Mayzoo]

amoxicillin is not a very effective antibiotic when it comes to strep. you may need to try another. If doc will not, make sure you retest after the amox to see if the strep cleared.

[cara615]

Thank you for responding. I just don't know what could be making my son's tics spike like this after we have had such great success with diet and methylation. In regulare cases of TS, tics don't spike as much with an infection. This is based on friends that I know that have children with TS that have had STREP infections.

[LNN]

My DS tics when his body can't get rid of toxins quickly enough. So when he's fighting a strep infection, a yeast infection or when we hit lyme really hard, he ticced until the scales tipped in his favor and the toxin load got light enough for his body to keep up. So if you're killing strep and the strep bacteria is releasing toxins as it dies, and your DS is struggling to detox, it might be causing neuroinflammation and messing with signalling. Even with methylation support, my DS tics when his body gets overwhelmed. But the tics go away once he gets healthy again. For me, his tics are the canary in the coal mine. But once we get ahead of the infection, they start to subside (tho they often takes longer to completely go away than the other PANS symptoms)

[cara615]

I gave him 5mls of ibuprofen as a test to see if there was any affect. After about 30 mins all his tics have subsided. He has a breakthrough "ah" every now and then but the constant, relentless vocals are now way less. Even the breakthrough "ah's" are softer and less intense when he makes them.

 

So I am assuming we are dealing with some inflammation here. huh?

[JoyBop]

I have been told that a strep carrier will have a positive swab but not have an increase in ASO or anti D nase titres. Have you had the blood work done?

[cara615]

We get the results in a week. My dr. Is going by what the NIH says and she wants to see increased Titres in either the ASO or anti D nase B.

[cara615]

Could he be a strep carrier and have simple TS and not pandas? If so then why are his tics through the roof now and not any other time?

 

Ps. He had a strep test over the summer and it was neg.

[JoyBop]

Forgive me if I missed some other posts, but what other symptoms does your child have? For how long?

 

Bloodwork can be helpful but there can also be some grey areas as well. In an ideal situation you get your blood work done and then redo it a couple of weeks later. The ASO/anti Dnase should rise/fall at certain times. Ideally you want to see that the ASO rises and then falls and the Dnase will rise 6 weeks or more after an infection. A strep carrier would not show these changes because the strep bacteria happily cohabitate and the child would not produce antibodies. With that said, not all children make these antibodies at all.

 

My child had an asymptomatic infection and tested positive on the swab. His ASO was 4 times the normal and has yet to fall to normal levels, (its been almost a full year) but the anti Dnase has never changed at all and is in normal range. The important thing is that you have proof of the infection with the swab. If you read what the NIH says, it does say that you have to use the titres in a relative way (Watching for that rise/fall)as some kids titres will remain high for a year or more and doesn't mean there is an active infection. Good for you that you have a positive strep test!

 

I agree that Amox is not a great choice for this situation. My daughter was on it for three months with no improvement and the strep remained. 3 weeks on Keflex and there was a world of change. Every child responds differently and that choice is between you and your doctor, but Im just sharing our experience.

 

Its great that your doc is open to reading what is available about PANDAS. Hopefully he/she will trial your child on a stronger abx. My personal rule of thumb is treat until the symptoms are gone at very least. My two children remain on full dose KEflex BID and will until they are much older. IT took a while to get to the right doctors. It sounds like you are just at the beginning of your journey. Dont give up and keep your eye out for other symptoms such as anxiety, OCD, sleep disturbances and rages.

[cara615]

He was diagnosed with TS/OCC/ADHD and anxiety in May. his OCD is very mild and with diet changes and addressing methylation and yeast we pretty much resolved all the OCD/ADHD/anxiety. We just deal with the tics now and sensory. I had him almost tic free from Aug till Nov. then over the course of 2 weeks the tics spiked and I decided to get his throat swabbed just to see. BAM it was positive. It coincides with the increase in tics but that does not mean PANDAS, right? The only thing that has me suspicious is that he has had STREP at least 2 other times in his life (he is almost 6) and both those other times he had symptoms. Bad symptoms. This time he was completely asymptomatic.

 

he does not show the typical debilitating OCD/rage/complete personality changes that other PANDAS kids display. But his tics are SEVERE. constant, more than 60 a minute and its a high pitched "ah" at the moment. i fear for him at school.

 

We are on day 3 of abx and after the 10 days are up I will re-test him and ask for another blood test to check titres.

 

What else can I do?

[JoyBop]

IT sounds like you are doing all of the right things. It certainly looks like PANDAS to me, he has all of the features, it waxes and wanes, and you can identify the triggers. SOme have serious rage and personality changes, and some have severe tics. Some just have moderate symptoms, you really cant compare one child to another.

 

It sounds also like you have done some other really great things to help your childs immune system and you are way ahead of the game. Two of my kids had asymptomatic strep infections. I dont think I have an explanation, other than the fact that they have a "misguided immune system" as Dr. Swedo so eloquently put it.

 

At the PANDAS conference last weekend one of the doctors spoke about how kids with PANDAS tolerate long term abx without any problems. No one knows why, but she said that they dont get c-diff. (Im sure "some" do but overall she commented on how infrequently they have a bad gut reaction compared with the general population.)

 

I would recommend Dr. Bocks book. He spoke about the gut-brain connection and covers in his book many ways to support the immune system and specifically addresses yeast. But it sounds like you already have a good footing in that area.

 

Unfortunately, our kids with chronic PANDAS do experience flares that come, some linger, and go. If you can identify the triggers you are ahead of the game. I know for myself its most frustrating when I cant figure it out. Like, why are BOTH of my kids RAGING right now? Im pulling my hair out!