Need advice

[Tattoomom]

My husband and I usually agree on everything, well, almost everything but we are not seeing eye to eye on this.

 

Our ds has always been a spirited child. We went through terrible 1, 2's, 3's & 4's with him. He was highly aggressive (hitting, crying, tantrums) yet highly sensitive (hated tags in his shirt, loud noises, crowds, new places) He seemed to outgrow a lot of these issues with time. And then came the tics around age 5 1/2. He had a throat-clearing tic that lasted from Dec 06-Feb 07. He was very sick at the time it started, with a cold/cough, and we thought it was just from being sick. He then replaced the throat-clearing with rapid, heavy eye blinking. The eye blinking was way worse than the throat-clearing ever was. He started out blinking all.day.long. This is the tic that always comes back. He's waxed and waned, and even been completely tic free for 6 months at a time but then they seem to come back, usually during/after an illness. He developed a new eye roll tic in September, had swine flu in October and ever since, he's been ticcing bad. He started throat clearing and blinking again but added some new tics like finger flicking/touching finger tips (looks like he's trying to flick something off his finger), neck tic (looks like he's trying to crack his neck/stretch), he wipes his hands on his pants or the couch constantly, and I see him stretch his mouth a little bit. It's like he had an explosion! He took a course of Abx. for an ear infection during his bout with H1N1 back in October and since then, he's relapsed.

 

I'm worried and not sure what to think. My husband claims he doesn't see half of it! We have no confirmed family history of TS. We do have a whole lot of autoimmune disorders though.

 

He had strep titers done back in 2007 when he had his first explosion of tics and was negative. Took him to the Ped. last week when his younger sister had a fever & sore throat and they both tested negative on rapid strep test.

 

I think we should find out why he has this burst in tics, but dh doesn't think we should. He thinks ds is fine and says, "So what if he has tics. They're not hurting him or hindering him in anyway."

 

I guess I just look at the body as a whole and feel like we should seek out the reason this is happening. Am I crazy for thinking this way?

 

Should I pursue anything? If so, what? Where do I begin?!

 

Will it hurt him to just let it go and chalk it up to tics/TS if it possibly could be PANDAS? I lean towards PITANDS since he seems to get hammered with tics after an illness. Or is that typical?

 

We just started him in therapy last week for his anxiety/fits he has. The Psychiatrist put him on a low dose of Zoloft. He noticed the tics (he has tics as well) and it bothered me a little because he kept talking to ds about his tics, and I'm sure that only made it worse. He sees the therapist again in a couple weeks, should I request he not speak to ds about the tics? It was kind of strange because he kept telling us, come 17-18 years old, they will be gone, yet he himself was clearly ticcing in front of us. I felt a little bad because I asked him about his tics and he looked rather shocked that I noticed.

 

Anyway, getting back to my original reason for posting...

 

Would you do anything in our situation? Does this sound like TS more than PANDAS?

[faith]

Tatoomom,

hi, I don't really have any advice, but just wanted to let you know we have a very similar presentation and testing results, except for the H1N1, my son didn't have that. we are low on titers and always test neg on strep tests, just had one last week with a new pediatrician. I'm also going by symptoms and past illness, which I can only attest to one strep about three years ago. after that it is all viral. I am doing abx now, tried a month of augmentin, and now into a month of Zithromax. so far I can't attest to any real improvement of existing symptoms, I'd say he's pretty much status quo. I guess the advice I'd give is to see the closest PANDAS doc and see what they say. I think its a clinical picture, but kind of confusing tho, I wish I was seeing some improvement on the abx, or at least had a positve strep or titers to at least make me feel like I am doing the right thing. If my son's symptoms were milder and not of concern, I think I would not persue this, but I felt like something else might be going on, so I'm doing what I have to do, least invasive first, altho I'm very cautious.

 

Faith

[peglem]

I can't tell you if its PANDAS, but I think you can't not investigate further- you need to find out if you can. If its not PANDAS, it sounds like it is at least immune related, so maybe get his immune system checked out. Did he have improvement w/ abx? You said he relapsed, so yes? Seems like it takes longer for hubs to come around (not always), but evidence from a good doctor who knows what to look for can often help.

[Tattoomom]

I can't tell you if its PANDAS, but I think you can't not investigate further- you need to find out if you can. If its not PANDAS, it sounds like it is at least immune related, so maybe get his immune system checked out. Did he have improvement w/ abx? You said he relapsed, so yes? Seems like it takes longer for hubs to come around (not always), but evidence from a good doctor who knows what to look for can often help.

 

 

He went from Feb 15.- August 22. with no tics at all. I noticed some mild blinking in August, a new eye roll tic popped up in September and only lasted a couple weeks. Then in October he had confirmed flu/ear infection with no tics. Took Amoxicillin and shortly after blew up with new tics. Tics we've never seen before. Granted, he had the eye roll tic in Sept. that I'd never seen before either. So, who knows... He's just never had this many new tics come up at once.

[thereishope]

If it is PANDAS, it may be tolerable now as your husband put it, but it doesn't mean it will always be. The tics can worsen, new issues can surface. Tackle the possible problem now before it's out of control chaos.

 

As for when the tics seem to surface, strep is often the original trigger but then once that Pandora's box is opened, viruses, allergies, exposure to strep, stress can also become triggers. Some notice a calming of PANDAS symptoms while the child is sick. Like calm before the storm. Some right befroe teh child gets sick and some while the child is sick. So it is important to keep track of the upswings in symptoms to learn your own child's pattern. That original strep trigger might have been missed by the parent if it occurred early in life or was sudden, but not out of control.

 

When the tics are present you can try to give some Ibuprofen and see if that helps. Some PANDAS kids get relief from the use of Ibuprofen (Advil, Motrin). It does not work for all kids, but if it does, any would see that as a sign that PANDAS is highly possible.

[Joan Pandas Mom]

I have been reading another blood test, Anti-DNase B might be a better indicator to PANDAS. I am going to have both the ASO Titer the DNase B done from now on. I think the Rapid strept are useless. There are many false negatives. It seems my son's PANDAS gets worse with any illness. His ASO was 1,014 in October but his strept test came back non group A strept--Not sure what that means. Good Luck with all this.

 

My husband and I usually agree on everything, well, almost everything but we are not seeing eye to eye on this.

 

Our ds has always been a spirited child. We went through terrible 1, 2's, 3's & 4's with him. He was highly aggressive (hitting, crying, tantrums) yet highly sensitive (hated tags in his shirt, loud noises, crowds, new places) He seemed to outgrow a lot of these issues with time. And then came the tics around age 5 1/2. He had a throat-clearing tic that lasted from Dec 06-Feb 07. He was very sick at the time it started, with a cold/cough, and we thought it was just from being sick. He then replaced the throat-clearing with rapid, heavy eye blinking. The eye blinking was way worse than the throat-clearing ever was. He started out blinking all.day.long. This is the tic that always comes back. He's waxed and waned, and even been completely tic free for 6 months at a time but then they seem to come back, usually during/after an illness. He developed a new eye roll tic in September, had swine flu in October and ever since, he's been ticcing bad. He started throat clearing and blinking again but added some new tics like finger flicking/touching finger tips (looks like he's trying to flick something off his finger), neck tic (looks like he's trying to crack his neck/stretch), he wipes his hands on his pants or the couch constantly, and I see him stretch his mouth a little bit. It's like he had an explosion! He took a course of Abx. for an ear infection during his bout with H1N1 back in October and since then, he's relapsed.

 

I'm worried and not sure what to think. My husband claims he doesn't see half of it! We have no confirmed family history of TS. We do have a whole lot of autoimmune disorders though.

 

He had strep titers done back in 2007 when he had his first explosion of tics and was negative. Took him to the Ped. last week when his younger sister had a fever & sore throat and they both tested negative on rapid strep test.

 

I think we should find out why he has this burst in tics, but dh doesn't think we should. He thinks ds is fine and says, "So what if he has tics. They're not hurting him or hindering him in anyway."

 

I guess I just look at the body as a whole and feel like we should seek out the reason this is happening. Am I crazy for thinking this way?

 

Should I pursue anything? If so, what? Where do I begin?!

 

Will it hurt him to just let it go and chalk it up to tics/TS if it possibly could be PANDAS? I lean towards PITANDS since he seems to get hammered with tics after an illness. Or is that typical?

 

We just started him in therapy last week for his anxiety/fits he has. The Psychiatrist put him on a low dose of Zoloft. He noticed the tics (he has tics as well) and it bothered me a little because he kept talking to ds about his tics, and I'm sure that only made it worse. He sees the therapist again in a couple weeks, should I request he not speak to ds about the tics? It was kind of strange because he kept telling us, come 17-18 years old, they will be gone, yet he himself was clearly ticcing in front of us. I felt a little bad because I asked him about his tics and he looked rather shocked that I noticed.

 

Anyway, getting back to my original reason for posting...

 

Would you do anything in our situation? Does this sound like TS more than PANDAS?

[Buster]

Streptolycin O is an toxin produced by streptococcal bacteria. Anti-Streptolycin O (ASO) is an antibody produced by the immune system to this toxin. Streptolycin O can be produced by Strep A, Strep C and Strep G.

 

The antibodies of Streptolycin O rise 1-4 weeks after a strep infection but can remain elevated for a considerable amount of time. Direction of titer is much more important than level as many school age children can have chronically elevated ASO levels.

 

Most children do not have two measurements (i.e., to look for a rise) so a laboratory uses statistics to compute something known as the upper limit of normal -- this is typically age and geography dependent. If your child's ASO is higher than 30% above the upper limit of normal it is considered elevated -- however, technically you need two measurements to know if the titer is rising (indicating a strep infection in the prior 1-4 weeks) or falling. Only the rise is meaningful.

 

While most folks think blood tests are "more accurate" this is not really true in the case of ASO. In a study by Shet in 2003 http://www.journals.uchicago.edu/doi/pdf/10.1086/377700 ASO reported a false negative in 46% of cases despite colonized strep in subjects and perfect timing of the measurement.

 

Anti-DNAse B actually isn't better. It has a false negative response of 55% (with perfect timing). What is interesting is if you combine the two measurements one of the two measurements will rise in 69% of cases. However, this still leaves 31% of the cases where it won't rise (despite a positive culture).

 

The bottom line is that the throat culture (rapid or 72 hour) is still the most accurate for onset -- you just have to get it within a week of colonization/infection. ASO and AntiDNAse B should be used if you don't get a positive culture (but still suspect GABHS). You really need two blood draws to check ASO and AntiDNAse B and an idea of when your child would have been exposed to strep. The draw is typically done for both at 3 weeks (post infection) and then again at 5 weeks. A rising titer in either can confirm a prior strep infection but cannot rule out a prior strep infection (due to the high false negatives).

 

Best regards,

 

Buster

P.S. A bit more on ASO can be found at: http://www.latitudes.org/forums/index.php?showtopic=3756

 

There's also some information in a PANDAS FAQ at: http://www.latitudes.org/forums/index.php?showtopic=6266

 

 

 

 

I have been reading another blood test, Anti-DNase B might be a better indicator to PANDAS. I am going to have both the ASO Titer the DNase B done from now on. I think the Rapid strept are useless. There are many false negatives. It seems my son's PANDAS gets worse with any illness. His ASO was 1,014 in October but his strept test came back non group A strept--Not sure what that means. Good Luck with all this.

 

My husband and I usually agree on everything, well, almost everything but we are not seeing eye to eye on this.

[T_Mom]

He went from Feb 15.- August 22. with no tics at all. I noticed some mild blinking in August, a new eye roll tic popped up in September and only lasted a couple weeks. Then in October he had confirmed flu/ear infection with no tics. Took Amoxicillin and shortly after blew up with new tics. Tics we've never seen before. Granted, he had the eye roll tic in Sept. that I'd never seen before either. So, who knows... He's just never had this many new tics come up at once.

 

 

Hi Tattoomom,

I can tell you that our d had an eruption of OCD and mild ticcing when she went off of Amoxicillan and to half strength last year. We reintroduced FULL strength Amoxicillan and the symptoms went away--If you have had tics subside with antibiotics in the past it may be that they have a positive effect, but need to be at a certain level.

Hope all is well--

TMom

[Tattoomom]

He had strep titers done back in 2007 when he had his first explosion of tics and was negative. Took him to the Ped. last week when his younger sister had a fever & sore throat and they both tested negative on rapid strep test.

 

 

Back in March 2007 (3 months after tics started) he had strep titers done after a negative throat culture-

 

ASO- 7

DNASE-B- <60

 

He's had a couple negative throat cultures since but we never repeated the blood work.