New Tourette's Diagnosis, wondering about PANDAS

[Bigal]

Hi,

 

My 8 year old son was diagnosed with Tourette's on Friday. One of the Tourette's websites led me over to PANDASnetwork.org. So now I'm wondering if it might be PANDAS instead. Honestly, I think it is most likely Tourette's, but I don't want to make any assumptions.

 

I don't believe that he has ever had Strep throat, but his brother and sister have. So he has been exposed to the virus. I believe that at PANDASnetwork, it says that exposure is enough.

 

My son has asthma, as well as respiratory and sinus issues, and some excema. He has anxiety issues. Although I don't have a diagnosis of any sort, I am also an anxious person. His mother has depression. I have an an autoimmune disease (no IGA).

 

So these factors make me think that perhaps he isa likely candidate.

 

I read some of the case studies on The PANDASnetwork.org website. In each of those cases, there was a sudden onset of dramatic symptoms. But I believe that I read somewhere that that doesn't have to be the case. My son did not have any dramatic onset. And honestly, we were noticing potential anxiety issues when he was in pre-school. Then about a year ago, he started having tics. Then they'd get better, then worse. Phonic and motor.

 

So again, there has not been any dramatic event. Does the absence of the dramatic event rule out PANDAS or make the chances very remote.

 

Any thoughts appreciated.

 

Thanks

Alan

Edited May 10, 2010 by BigAl

[peglem]

This is just my personal opinion, but I believe that any onset of neuro or psych symptoms has some underlying medical cause. Doctors seldom check for underlying causes and treat the symptoms instead. In the case of PANDAS and sudden onset, many families look back and realize that what seemed like a sudden onset was really a rapid and dramatic increase of symptoms that had been there already, just to a lesser degree. Those sudden explosions of symptoms are the ones that really get a lot of attention while the periods of less debilitating symptoms are frequently "explained by stress in the environment or childhood phases.

 

Nobody here, of course, can say whether your child has PANDAS, but I think the fact that you see enough evidence to consider that it may be the case is reason enough to pursue finding out. I think you have good reason to at least get an immune work up for your son.

[Fixit]

why does everyone here type gooder than me.....with all the good explanations

i echo peglem's opinion

[thereishope]

Welcome. May I ask what Tourette website sent you to PANDAS Network? You say your possible PANDAS son never had strep? Do you know that based on negative strep tests and/or blood tests or that he never complained about a sore throat? You can ghave strep w/o a sore throat or fever. Also, sinus infections can be caused by strep. For starters, if he has not had a strep test, get one.

 

You mention respiratory infection...can you elaborate? Does the words "walking pneumonia" or mycoplasma ring a bell?

 

One more thing I would like to ask is if Ibuprofen eases his tics?

 

Here are some threads about PANDAS that people find useful. Maybe they will answer some questions and lead you to new ones.

 

PANDAS Fact Sheet

http://www.latitudes.org/forums/index.php?showtopic=6265

 

PANDAS FAQ

http://www.latitudes.org/forums/index.php?showtopic=6266

 

Signs of OCD in a young child

http://www.latitudes.org/forums/index.php?...ic=6153&hl=

 

I gave the last one because often people don't realize that their child has OCD tendencies.

Edited May 11, 2010 by Vickie

[saidie10]

I am sure this is a scary time for you and your family. I would ABSOLUTELY test his titers because although you don't think he has ever had strep, his blood could show elevated titers. Don't stop until you have ruled out EVERYTHING...for your son and your family's peace mind. Good luck and I hope you find the answers here and elsewhere that you are looking for.

 

Hi,

 

My 8 year old son was diagnosed with Tourette's on Friday. One of the Tourette's websites led me over to PANDASnetwork.org. So now I'm wondering if it might be PANDAS instead. Honestly, I think it is most likely Tourette's, but I don't want to make any assumptions.

 

I don't believe that he has ever had Strep throat, but his brother and sister have. So he has been exposed to the virus. I believe that at PANDASnetwork, it says that exposure is enough.

 

My son has asthma, as well as respiratory and sinus issues, and some excema. He has anxiety issues. Although I don't have a diagnosis of any sort, I am also an anxious person. His mother has depression. I have an an autoimmune disease (no IGA).

 

So these factors make me think that perhaps he isa likely candidate.

 

I read some of the case studies on The PANDASnetwork.org website. In each of those cases, there was a sudden onset of dramatic symptoms. But I believe that I read somewhere that that doesn't have to be the case. My son did not have any dramatic onset. And honestly, we were noticing potential anxiety issues when he was in pre-school. Then about a year ago, he started having tics. Then they'd get better, then worse. Phonic and motor.

 

So again, there has not been any dramatic event. Does the absence of the dramatic event rule out PANDAS or make the chances very remote.

 

Any thoughts appreciated.

 

Thanks

Alan

[MomWithOCDSon]

Hi Alan ---

 

Two important points that my family has learned from personal experience: 1) a child can "have" strep but appear entirely asymptomatic, meaning, when his siblings had strep, he may have contracted it as well but not developed classic sore throat, fever or other symptoms you'd readily recognize; and 2) as Peglum suggested, "rapid onset" is something that seems to have some relativity in the PANDAS community. While some kids literally go to bed one night "normal" and wake up the next morning with dramatic behavioral changes, others (like my strep-asymptomatic son) show more muted signs for years of various PANDAS-type behaviors, with the major exacerbation (or rapid onset) episode occurring years after they've already been identified as having various other conditions, from anxiety to OCD to TS to autism.

 

Unfortunately, unlike the bear that shares the name, PANDAS is more grey than it is black and white. But it does appear you have sufficient "markers" or signs to investigate further. It will do no harm, and may very well put your son on a quicker, straighter path toward healing. As others have suggested, have your son's titers and immune panel tested, and then take it from there.

[Bigal]

Thank You Vickie, Peglem and Fixit

 

No, I don't know if he has had strep then. I just know that he never had a sore throat. But since his brother and sister had strep sore throats, I'd assume that he was exposed to the virus. For that matter, aren't almost all school children exposed to it. So ok, he should have a strep test. But would a negative result mean anything? Would it rule out PANDAS? If he now tests negative for strep, but once had it, can he have PANDAS?

 

No, he didn't have a respiratory infection. He has had respiratory issues, primarily asthma, but also unidentified allergies that give him sinus issues.

 

I've never tried ibuprofen to ease his tics. I didn't realize that they may help. I may try that, but at the same time I want to be low key about his tics. And I don't want to have to tell him I am giving him something because of his tics. At least not yet. That said, if ibuprofen eased his tics would that be indicative of PANDAS, or counter-indicative?

 

It was the braintalk communities Tourette's forum where I first heard the word "PANDAS". I'm not sure if that's where I found the link to this website.

 

I'm wondering now, as I said, he hasn't had any sudden onset. But is it possible that he has PANDAS and the big event just hasn't happened yet?

 

Thank for the information. I will check the websites.

 

Sincerely

Alan

 

Welcome. May I ask what Tourette website sent you to PANDAS Network? You say your possible PANDAS son never had strep? Do you know that based on negative strep tests and/or blood tests or that he never complained about a sore throat? You can ghave strep w/o a sore throat or fever. Also, sinus infections can be caused by strep. For starters, if he has not had a strep test, get one.

 

You mention respiratory infection...can you elaborate? Does the words "walking pneumonia" or mycoplasma ring a bell?

 

One more thing I would like to ask is if Ibuprofen eases his tics?

 

Here are some threads about PANDAS that people find useful. Maybe they will answer some questions and lead you to new ones.

 

 

PANDAS Fact Sheet

http://www.latitudes.org/forums/index.php?showtopic=6265

 

PANDAS FAQ

http://www.latitudes.org/forums/index.php?showtopic=6266

 

Signs of OCD in a young child

http://www.latitudes.org/forums/index.php?...ic=6153&hl=

 

I gave the last one because often people don't realize that their child has OCD tendencies.

[peglem]

So ok, he should have a strep test. But would a negative result mean anything? Would it rule out PANDAS? If he now tests negative for strep, but once had it, can he have PANDAS?

A negative result could mean a) he does not currently have a strep infection in his throat or they did a bad job of swabbing his throat and didn't get a good enough sample. But, no it would not rule out PANDAS. It would not even necessarily rule out strep, since strep can also infect other body orifices. PANDAS is caused by antibodies to strep (but not the ASO or Dnase ones you hear about), not the bacteria itself, and since antibodies hang around even after the infection is gone, he could still have PANDAS symptoms after the infection has passed.

 

No, he didn't have a respiratory infection. He has had respiratory issues, primarily asthma, but also unidentified allergies that give him sinus issues

 

If the allergens have not been identified, how do they know its allergies and not infection? My daughter's sinus problems were dismissed as allergies for years before she had allergy testing done- all those tests came up neg. when they finally did run them. Later we found out that she is IgE deficient, and improbable that she could even mount an allergic response.

 

It was the braintalk communities Tourette's forum where I first heard the word "PANDAS". I'm not sure if that's where I found the link to this website.

I put the link there. Glad someone noticed!

 

I'm wondering now, as I said, he hasn't had any sudden onset. But is it possible that he has PANDAS and the big event just hasn't happened yet?

Yes, that's a possibility. And if that's the case you have a good chance of avoiding the "big event" altogether if you get it treated properly.

 

Definitely check out those links Vickie gave you- there is a LOT of info there and it may take a while to cover all of it, but its good stuff and pretty comprehensive of what is known about PANDAS.

[Bigal]

Thanks again to everybody. I really appreciate your input. I already email our trusted family doctor and will call a Panda specialist tomorrow. SAIDIE10, you said below "don't stop until I ruled out EVERYTHING". Other than PANDAS, do you know of other things that I should be looking at?

 

Thanks again. I really appreciate everybody's kind help.

 

Alan

 

 

 

I am sure this is a scary time for you and your family. I would ABSOLUTELY test his titers because although you don't think he has ever had strep, his blood could show elevated titers. Don't stop until you have ruled out EVERYTHING...for your son and your family's peace mind. Good luck and I hope you find the answers here and elsewhere that you are looking for.

 

Hi,

 

My 8 year old son was diagnosed with Tourette's on Friday. One of the Tourette's websites led me over to PANDASnetwork.org. So now I'm wondering if it might be PANDAS instead. Honestly, I think it is most likely Tourette's, but I don't want to make any assumptions.

 

I don't believe that he has ever had Strep throat, but his brother and sister have. So he has been exposed to the virus. I believe that at PANDASnetwork, it says that exposure is enough.

 

My son has asthma, as well as respiratory and sinus issues, and some excema. He has anxiety issues. Although I don't have a diagnosis of any sort, I am also an anxious person. His mother has depression. I have an an autoimmune disease (no IGA).

 

So these factors make me think that perhaps he isa likely candidate.

 

I read some of the case studies on The PANDASnetwork.org website. In each of those cases, there was a sudden onset of dramatic symptoms. But I believe that I read somewhere that that doesn't have to be the case. My son did not have any dramatic onset. And honestly, we were noticing potential anxiety issues when he was in pre-school. Then about a year ago, he started having tics. Then they'd get better, then worse. Phonic and motor.

 

So again, there has not been any dramatic event. Does the absence of the dramatic event rule out PANDAS or make the chances very remote.

 

Any thoughts appreciated.

 

Thanks

Alan

[EAMom]

I would definitely start with a throat culture...and ditto Vickie's links, and peglem's and MomtoOCDson's comments.

 

Has your son ever been on predinisone (oral) for the asthma? Did it do anything to the tics/anxiety?? The change (from pred) might be temporary and have taken a couple of weeks after the course of pred to kick in.

[Bigal]

I would definitely start with a throat culture...and ditto Vickie's links, and peglem's and MomtoOCDson's comments.

 

Has your son ever been on predinisone (oral) for the asthma? Did it do anything to the tics/anxiety?? The change (from pred) might be temporary and have taken a couple of weeks after the course of pred to kick in.

 

Thanks again to everybody. I will be calling PANDA sprecialitsts this morning. I got two names from Diana the PANDAS network.

 

I don't know if he has ever been on predinisone. I'm more familiar with the marketing names of his medicines. I'll check with his Dr. Are you saying that Prednisone can cause tics?

 

Alan

[thereishope]

None of my 3 kids get a sore throat or fever.

 

Here's a flowchart for suggestions on how to go about a diagnosis

 

PANDAS Flowchart

http://www.latitudes.org/forums/index.php?...ic=6688&hl=

 

 

If he has a negative strep test, it does NOT rule out PANDAS, but it's a step in the process.

 

Do a rapid. If that comes back negative, make sure they do a cultures. If the culture comes back negative, then do blood tests. Now if blood tests come back in "normal" ranges (which is actually common in PANDAS kids) still push for a trial of antibiotics. The most effective antibiotics seem to be Zithromax and Augmentin.

 

Yes, it sounds like your fishing around for strep, but that is exactly what you are doing. These kids are odd how their bodies hide the strep and the strep is so stubburn not to be erradictaed. It is our job to get rid of it no matter where it is. Strep can be in the throat, ears, nose, gut, anal, and for girls vaginal. Strep can also be on the skin.

Edited May 11, 2010 by Vickie

[faith]

BigAl,

While you are persuing the PANDAS connection, also visit the tics/tourettes side of the forum here, as you may find some useful information on how to manage your sons tics.

 

If you don't find any strep connection, I do, however, think a 'trial' of an antiboitic such as augmentin or even amoxy might be worthwhile, just to see if it has any effect.

 

good luck.

 

 

Faith

[Phasmid]

Hi,

 

I'm not saying that your child does not have TS, but I will say that my son was diagnosed with TS prior to us learning it was PANDAS. Whatever my son had, which looked every bit of TS, resolved immediately with antibiotics. It was strongly urged by several medical doctors, including a neurologist, that we treat him immediately with the medications available. But it just didn't make any sense to me whatsoever, that my son would be a darling, gifted, humorous boy one day, and be an unrecognisable monster the next, literally. So after thanking everyone for their time, I said goodbye to all of our docs, and found someone who believed what I did about chronic infection being a trigger. In 2004, my son was treated with an antifungal med called nystatin. He was well in about two weeks, and recovered from lingering ocd in two months. He remained well for four years, except for some minor ocd that would come and go with stress. Then, in 2009, he became extremely ill with ocd and tics. He was nonfunctional and homebound. This time he was treated for another gut infection using Flagyl, and a very strong antibiotic called vancocyn. He was well in two weeks and has been for one year. There is a lot of talk about gut issues in these kids. I think the reason my son responded so fast this last time was the antibiotic. Flagyl is extemely effective against gut bugs. Vancocyn is a drug that stays in the gastrointestinal tract mainly, and is not absorbed in the small intestine. So, my son's infection must have been in the lower bowel, and since the antibiotic remains active all the way to the colon, it is effective there. There is a chance that my son has had a chronic Mycoplasma pneumoniae (another bacteria) on top of this. He hasn't had elevated anti- Strep antibodies, but he recently showed an elevated anti-Mycoplasma antibody. So he was recently put on a longer course of Biaxin for that. I don't have proof of anything except that he responded to antibiotics and he is well now. The point I want to get across is that all of this psychotic stuff in kids is not necessarily tied to Streptococcus alone. I very much believe that TS can be triggered by many types of infectious agents. The most recent issue of Discover Magazine has an article about virus-induced schizophrenia. I hope that you are able to find help soon.