Do you think more kids are diagnosed with TS or PANDAS?

[Tattoomom]

Do you think children are incorrectly diagnosed with PANDAS when it's really Tourette's or vice versa?

[peglem]

This is an opinion piece, right? I think if a child is dx'd with tourettes or any neurological disorder that is only symptoms based, a search for an underlying medical cause should ensue. I don't think all tourettes or tics have PANDAS as a cause, but I do think tourettes is often diagnosed in PANDAS kids until parents have pushed for PANDAS investigations. I guess its possible to have your child misdiagnosed with PANDAS, but from the experiences I've had, the majority of doctors are very reluctant to even consider PANDAS, no less dx it.

[Tattoomom]

I think if a child is dx'd with tourettes or any neurological disorder that is only symptoms based, a search for an underlying medical cause should ensue.

 

Right. I couldn't agree more!

 

I just don't know what to do. We are 3 years into on again and off again ticcing. He was tic free over 6 months and now they're back. I'm just not sure I feel comfortable "assuming" it's TS or transient childhood tics. I feel like we should rule out PANDAS but our Ped. feels we already have with a neg. throat swab and negative ASO and DNASE-B back in 2007.

 

What happens to the PANDAS kids who are incorrectly diagnosed TS?

[peglem]

I think if a child is dx'd with tourettes or any neurological disorder that is only symptoms based, a search for an underlying medical cause should ensue.

 

Right. I couldn't agree more!

 

I just don't know what to do. We are 3 years into on again and off again ticcing. He was tic free over 6 months and now they're back. I'm just not sure I feel comfortable "assuming" it's TS or transient childhood tics. I feel like we should rule out PANDAS but our Ped. feels we already have with a neg. throat swab and negative ASO and DNASE-B back in 2007.

 

What happens to the PANDAS kids who are incorrectly diagnosed TS?

The next time your child has an exacerbation, see if you can do a trial of abx. What we noticed with my daughter (who had +rapid strep tests, but was dismissed by specialists as "just" a carrier), was that symptoms improved on antibotics and I knew to bring her in for a strep test just by behavior.

Does your child only tic, or are there other symptoms?

[Tattoomom]

I think if a child is dx'd with tourettes or any neurological disorder that is only symptoms based, a search for an underlying medical cause should ensue.

 

Right. I couldn't agree more!

 

I just don't know what to do. We are 3 years into on again and off again ticcing. He was tic free over 6 months and now they're back. I'm just not sure I feel comfortable "assuming" it's TS or transient childhood tics. I feel like we should rule out PANDAS but our Ped. feels we already have with a neg. throat swab and negative ASO and DNASE-B back in 2007.

 

What happens to the PANDAS kids who are incorrectly diagnosed TS?

The next time your child has an exacerbation, see if you can do a trial of abx. What we noticed with my daughter (who had +rapid strep tests, but was dismissed by specialists as "just" a carrier), was that symptoms improved on antibotics and I knew to bring her in for a strep test just by behavior.

Does your child only tic, or are there other symptoms?

 

He has anxiety and will go through spurts of RAGING tantrums, where he cries and freaks out over everything. Oddly, he seems to bust out in tics several days following the start of his behavioral fits.

 

And then there are times where he just tics. Nothing else.

 

In hindsight, when his tics first started, he was also urinating constantly, to where I took him to the Ped. concerned it might be diabetes (that runs in my family) and I had no idea that was a symptom of PANDAS. He doesn't do it anymore, it was only in the beginning.

 

As for OCD's, he has them but I'd say they are mild.

 

It's weird because he complains of a sore throat a lot but when I take him in, his rapid strep is always negative, as are the cultures.

[peglem]

For my daughter, those raging freak out tantrums are usually the result of interruption of or inability to act out a compulsion. So maybe the OCD isn't as mild as you think it is? Have you had strep testing at the beginning, when the rages 1st show up? I also know what's coming the 1st time my daughter has a nighttime accident...its always the start of an exacerbation. How old is your son?

 

It is very common for kids to hide the OCD, especially if at 1st it was treated as misbehavior (REALLY easy mistake to make!).

[thereishope]

Well, strep can occur in other places, not just the throat.When you get the negative rapids and cultures, get strep tests on other family members too. Some PANDAS kids will have an exacerbation with only exposure. You can also have a PANDAS child go a long span without PANDAS symptoms only to have them resurface when a trigger for that child reappears.

 

In regards to your original question, I think some kids diagnosed with TS may be misdiagnosed. Same with kids with OCD. I'm not saying all kids are misdiagnosed. As for the vice versa...like Peg said, I don't see how the child would get an official diagnosis of PANDAS if they didn't fit the definition and especially if great improvement followed an antibiotic.

 

From what I understand kids that have already been diagnosed with TS do have to be more careful when a doctor wants to use a steroid as a diagnostic tool because if it ends up that child does in fact have TS, tics can worsen and perhaps not get better. But, that has been a debate in this forum before. To be honest, my son never had tics, do I didn't have to worry about that.

 

Your son may have triggers that you're not aware of. Like it was said before, triggers for a PANDAS child may be...

 

strep, viruses, allergies, exposure to strep or other illness, vaccinations, stress, some kids have had an excerbation following dental work more invasive than just a cleaning.

 

Also, the excerbation may happen after the event occurs. Vaccinations for example. I think the exacerbation may occur up to 2 weeks post vaccination (someone correct me if I'm wrong here). You just really have to log everything. With viruses, some have noted a setback a few days following the fever.

 

Every child's triggers are different and you'll have to log everything to see whhat his may be..

[dut]

Hello

 

Our dd has never had a positive group A strep test, never had titers that were elevated but has responded well to abx and just (this last couple of weeks) responded really well to a 5 day steroid burst (although as others have said if TS is a possibility you have to be cautious in using steroids). We also did the Cunningham tests and she came back in the high middle PANDAS range for CaMK.

 

If we had ruled out PANDAS 'cos of her test results we'd be in a very different, unhappy place now. She did test positive for beta hemolytic not group A strep during an exacerbation and family members have been positive for group B strep in the throat during other exacerbations she has had... so maybe these can trigger for her or maybe it's just chance. Our local children's hospital thought that those as triggers was rubbish (along with treating me as though I had Munchhausen by proxy, but heh...) but thankfully our ped tried her with the abx.

 

If it were me, I'd stick with it, ignore the ped, find another dr if you can and keep going until YOU are happy ruling it out or ruling it in... good luck...

[Joan Pandas Mom]

Have you had the titers checked since 2007? Don't let your Pedi make you feel like you are way off. Ask/insist on the tests whenever he has an exacerbation. I let too many people over the past 6 years make me feel I was crazy to ask for a culture without any strep symptoms.

 

I think if a child is dx'd with tourettes or any neurological disorder that is only symptoms based, a search for an underlying medical cause should ensue.

 

Right. I couldn't agree more!

 

I just don't know what to do. We are 3 years into on again and off again ticcing. He was tic free over 6 months and now they're back. I'm just not sure I feel comfortable "assuming" it's TS or transient childhood tics. I feel like we should rule out PANDAS but our Ped. feels we already have with a neg. throat swab and negative ASO and DNASE-B back in 2007.

 

What happens to the PANDAS kids who are incorrectly diagnosed TS?

[sf_mom]

I come from a position that 80% of all Tourette's and OCD are symptoms of PANDAS/PITANDS. BUT, hey that is just me, maybe a few others on this board would agree and maybe some Dr.'s Unfortunately, the science isn't completely there yet to prove one way or the other. Call it a 'mother's instinct'.

 

Please read some of my posts from earlier today as to why ASO Titers, Anti-DNAse-B and positive throat cultures should never be the diagnostic tool to rule out PANDAs. We have had to treat very aggressively but are determined on 100% recovery without remission for both our sons. It may take some time, it may take more than several IVIGs and long term antibiotics but we will get there. I look forward to the day when I'm giving an annual update and only encouraging others that are newly diagnosed.

[harmony]

Do you think children are incorrectly diagnosed with PANDAS when it's really Tourette's or vice versa?

My son was diagnosed with PANDAS and Tourettes. Even though he only has tics during exacerbation. Can they not be diagnosed with both? This is the way his Neurologist explained this to us: As long as he fits the criteria (even if the tics are a PANDAS symptoms) his diagnosis will still be Tourettes as well as PANDAS.

 

My sons diagnosis from Neurologist is PANDAS, Tourettes, and OCD - since he meets the criteria for all 3 (even though OCD and tics are ONLY present during PANDAS exacerbation).

 

TSA criteria for Tourettes Syndrome:

 

 

1.Both multiple motor and one or more vocal tics present at some time during the illness although not necessarily simultaneously;

 

2.The occurrence of tics many times a day (usually in bouts) nearly every day or intermittently throughout a span of more than one year; and

 

3.Periodic changes in the number, frequency, type and location of the tics, and waxing and waning of their severity. Symptoms can sometimes disappear for weeks or months at a time.

 

4.Onset before the age of 18.

[nevergiveup]

Agree SF Mom. Totally! I think all relapsing remitting ts with a comorbid Ocd is pandas. My neuro says there are probably 4 different types of ts (he's pretty well known for ts) one autoimmune, one something to do with birth weight and brain develop, one genetic with tics only and he didn't tell the 4th. I believe if the child develops OCD early and tics early like 5 yrs thru 7 years old with or without a strep diagnosis it is still most likely autoimmune. I think stats show that over 50 percent of all ts kids also suffer from ocd.

 

 

 

I come from a position that 80% of all Tourette's and OCD are symptoms of PANDAS/PITANDS. BUT, hey that is just me, maybe a few others on this board would agree and maybe some Dr.'s Unfortunately, the science isn't completely there yet to prove one way or the other. Call it a 'mother's instinct'.

 

Please read some of my posts from earlier today as to why ASO Titers, Anti-DNAse-B and positive throat cultures should never be the diagnostic tool to rule out PANDAs. We have had to treat very aggressively but are determined on 100% recovery without remission for both our sons. It may take some time, it may take more than several IVIGs and long term antibiotics but we will get there. I look forward to the day when I'm giving an annual update and only encouraging others that are newly diagnosed.

[Tattoomom]

Do you think children are incorrectly diagnosed with PANDAS when it's really Tourette's or vice versa?

My son was diagnosed with PANDAS and Tourettes. Even though he only has tics during exacerbation. Can they not be diagnosed with both? This is the way his Neurologist explained this to us: As long as he fits the criteria (even if the tics are a PANDAS symptoms) his diagnosis will still be Tourettes as well as PANDAS.

 

My sons diagnosis from Neurologist is PANDAS, Tourettes, and OCD - since he meets the criteria for all 3 (even though OCD and tics are ONLY present during PANDAS exacerbation).

 

TSA criteria for Tourettes Syndrome:

 

 

1.Both multiple motor and one or more vocal tics present at some time during the illness although not necessarily simultaneously;

 

2.The occurrence of tics many times a day (usually in bouts) nearly every day or intermittently throughout a span of more than one year; and

 

3.Periodic changes in the number, frequency, type and location of the tics, and waxing and waning of their severity. Symptoms can sometimes disappear for weeks or months at a time.

 

4.Onset before the age of 18.

 

I've never heard of being diagnosed with both? As for the list above from TSA, my son definitely fits the bill, especially since it says it can disappear for months at a time. I read somewhere though, that the cut-off was 3 months?

[Tattoomom]

For my daughter, those raging freak out tantrums are usually the result of interruption of or inability to act out a compulsion. So maybe the OCD isn't as mild as you think it is? Have you had strep testing at the beginning, when the rages 1st show up? I also know what's coming the 1st time my daughter has a nighttime accident...its always the start of an exacerbation. How old is your son?

 

It is very common for kids to hide the OCD, especially if at 1st it was treated as misbehavior (REALLY easy mistake to make!).

 

 

We had him tested for strep roughly 3 months after his symptoms started. He was 5 when it started and he's 8 now.

[Tattoomom]

Have you had the titers checked since 2007?

 

 

No, we haven't. He had a negative rapid strep test last week, but no titers have been done since 07.