Anxiety

[thereishope]

Excellent point to add! When my child is in the midst of an exacerbation, there is little I can do to help with the anxiety and other problems. I'd have to let it ride through. And, boy,there were days when it would last hours.

 

And if it is PANDAS, there is not a whole lot you can do to decrease the anxiety until he gets proper treatment.

 

Isabel

[EAMom]

Hi Bonnie,

I just want to say that I agree with the others who say you shouldn't discount pandas based on that 1) he didn't seem to improve on 1 course of 10 days of abs and that 2) he's only had one strep infection that you know of.

 

I would consider getting a current throat culture on your son and also family members to check for "carriers". Throat cultures aren 't 100% fool proof since strep can hide out in other places (sinuses, gut, skin) but they are a good easy place to start.

 

Some people find getting strep titers helpful (ASO/anti-dnase b ) ...if they are low (my dd's were) that doesn't rule out PANDAS. But, if they are high, that might give you evidence of prior strep infections.

 

The suggestion of trying advil (aka motrin, ibuprofen) is a good one. Some pandas parents find this helps with some symptoms.

 

I would also strongly encourage you to also consider getting testing through Dr. Cunningham's lab (Univ. of Oklahoma) when the lab re-opens in Jan. This may help you distinguish between pandas and nonpandas tics.

 

Lot's of PANDAS kids get strep infections with tics/behavior change as the only symptom (no fever, no sore throat), so parents never even know their kid has strep. Also, once the wheels of PANDAS are set in motion, other illnesess (viruses, non-strep bacteria, even vaccines) can trigger exacerbations. PANDAS becomes more of a chronic condition, vs an acute situation with clear highs and lows.

 

Also, be aware that many kids don't really improve on antibiotics until they get the right antibioitic (often Azithromycin or Augmentin) at a high enough dose, for long term. It might take a few weeks to notice a big improvement, and you may need to stay at that dose much longer to maintain the improvements. Many times, IVIG and/or pex are needed as well. PANDAS isn't a simple matter of 10 days of Amoxcillin and your kid is done!

[ilovedogs]

Thank you all for the input. I guess I have been ruling out PANDAS b/c he didn't have a sudden onset. He was hardly ever sick and the strep came on after his first noticeable set of tics developed. He always had on/off anxiety that I had chalked up to childhood phases from about the age of 2-8. Then about 5 months after the strep infection he developed the high anxiety. It started as anxiety while we were traveling and then morphed into the intrusive thoughts. We got his neurotransmitters tested through Neuroscience and started him on Kavinace and within a few days he was back to his old self.

 

Also, I've asked our ped., and both our naturopathic doctors and they weren't convinced he fit the bill for PANDAs. I will spend some more time researching this and consider this an avenue. But, convincing my dh to spend the money on testing and a doctor who is probably NOT covered by insurance is going to be hard.

 

 

Can some of you explain a typical day for a PANDAs kid to me? I mean, other than the 15 mins of anxiety he experiences every few days or so, he's totally normal. No hyperactivity, no emotional issues, no anger or defiance issues. So, I guess I always thought that PANDAS kids were in worse shape than we were and I figured that the 'episodes' were pretty obvious. I mean, we go days without any anxiety and then have a day where it crops up and then I won't see it again for a few more days. But, the tics are always there!

 

B

[EAMom]

re cost of the Cunningham tests: it's a $200 recommended donation (mainly covers costs of shipping your samples) which is tax deductable. IF you truly can't afford it, you don't have to pay. But, be aware that Dr. Cunningham is doing this on her own, there is no money for this study other than what we (parents) give.

 

IMO it's a really good investment if you are trying to figure out if your child is PANDAS.

[EAMom]

Can some of you explain a typical day for a PANDAs kid to me?

 

Incredibly variable since there is such a spectrum of symptoms/severity.

 

Not all PANDAS cases are "sudden onset", like Sue Swedo/nimh describe.

[thereishope]

I understand about the cost being a lot to some (me included!). That's why I suggested the Ibruprofen since you probably have some in the cabinet anyway.It's somewhere to start and you don't have to explain it to your huband! Also, like EAMom said rule out strep in others. As for the behaviors prior to strep, well, that's what you assume. My son's behaviors existed for 2+ weeks before I found out he had strep. I'm not trying to convince you that you're child has PANDAS, but it's just something you may want to explore a bit mroe. There are other triggers once the PANDAS "box" has been opened. Stress, allergies, virues, etc. Also, the symptoms and their severity vary greatly. No 2 kids are completely alike. Maybe there's a reason your gut told you to post on the PANDAS board?

[matis_mom]

Mati's mom- I am interested in the strep in the gut issue. How did you know- is there a test? What were his GI symptoms? How do you get rid of it, antibiotics?

thanks

dcmom,

I suspected it because he always had GI issues, nothing major, but he was always gassy, and either constipated or had diahrrea. He would complain of stomach aches off and on (although in general, he never complains about anything). He also had a couple of projectile vomiting episodes after our bad flu in Feb/09.

They found it through a stool test (Complete GI Panel), run through Diagnos-Techs (aparently there are not a lot of labs that do this). I am not sure what would be your best bet to get this done. I have a friend who highly suspects this and has been to the pediatrician and the gastroenterologist and they are both reluctant to run stool tests, I don't get why. You might have to resort to calling the lab directly to have them send you a collection kit and do it out-of-pocket.

He also had high streptozyme, ASO, and Dnase titers, which have gone down after 4 months of antibiotics and getting his tonsils out, but they are still way above normal, so I am not sure we are all clear yet. He does seem a lot better though, at least physically (before he was always tired). We are starting high-dose Augmentin and steroids next week, I am hoping that will do the trick!

Isabel

[ilovedogs]

I understand about the cost being a lot to some (me included!). That's why I suggested the Ibruprofen since you probably have some in the cabinet anyway.It's somewhere to start and you don't have to explain it to your huband! Also, like EAMom said rule out strep in others. As for the behaviors prior to strep, well, that's what you assume. My son's behaviors existed for 2+ weeks before I found out he had strep. I'm not trying to convince you that you're child has PANDAS, but it's just something you may want to explore a bit mroe. There are other triggers once the PANDAS "box" has been opened. Stress, allergies, virues, etc. Also, the symptoms and their severity vary greatly. No 2 kids are completely alike. Maybe there's a reason your gut told you to post on the PANDAS board?

I give him ibuprofen for headaches and body aches occasionally and I never see a change in his anxiety or tic level. Why would you give ibuprofen anyway? I also have tried the Benadryl to see if that helped but the only thing it did was make him sleepy and help his runny nose at the time. He has very minor seasonal allergies.

 

Bonnie

[smartyjones]

IMO it's a really good investment if you are trying to figure out if your child is PANDAS.

 

EAMom and others familiar with cunningham test -- i know it's not fully a diagnostic test but is that what you're primarily using it for?

 

when i heard of it in Aug/Sept, my son was not in exacerbation so i decided not to do it at that time b/c of the $ and didn't seem 'necessary'. he had sudden onset(although occasional things in the years before that i think are related), high titers and + throat culture. he fits all the criteria that they typically have used in studies.

 

our plan B if he spirals downward would be to go to dr. L. i've thought it would be something we'd do then if necessary. although it would certainly be interesting to see the numbers, would there be any other reason to do it if i firmly believe he has pandas?

 

thanks.

[EAMom]

IMO it's a really good investment if you are trying to figure out if your child is PANDAS.

 

 

our plan B if he spirals downward would be to go to dr. L. i've thought it would be something we'd do then if necessary. although it would certainly be interesting to see the numbers, would there be any other reason to do it if i firmly believe he has pandas?

 

 

 

Even though we knew our dd was PANDAS it felt good seeing some actual lab confirmation. Also, for us it helped us convince our local immunologist to okay IVIG (so we didn't have to fly to Chicago from CA to have it done with Dr. K.). Also, we got a sample pre-IVIG and then post...we hope to repeat it in another 6-12 mo to help us gauge recovery.

[thereishope]

Some have found that Ibruprofen takes enough swelling down off the basal ganglia that they notice some improvements in behaviors and/or tics.But it is not a diagnostic test. As for allergies, those affect my son's PANDAS. He does not have bad allergies either. Like this year his only allergy symptom was red eyes, but I noticed when I religiously gave him Benadryl for the eyes, once the reddness was under control, his behaviors stabilized too.

 

 

I understand about the cost being a lot to some (me included!). That's why I suggested the Ibruprofen since you probably have some in the cabinet anyway.It's somewhere to start and you don't have to explain it to your huband! Also, like EAMom said rule out strep in others. As for the behaviors prior to strep, well, that's what you assume. My son's behaviors existed for 2+ weeks before I found out he had strep. I'm not trying to convince you that you're child has PANDAS, but it's just something you may want to explore a bit mroe. There are other triggers once the PANDAS "box" has been opened. Stress, allergies, virues, etc. Also, the symptoms and their severity vary greatly. No 2 kids are completely alike. Maybe there's a reason your gut told you to post on the PANDAS board?

I give him ibuprofen for headaches and body aches occasionally and I never see a change in his anxiety or tic level. Why would you give ibuprofen anyway? I also have tried the Benadryl to see if that helped but the only thing it did was make him sleepy and help his runny nose at the time. He has very minor seasonal allergies.

 

Bonnie

[EAMom]

Yeah...the way I see it...if your child clearly improves on Ibuprofen, then that is highly suggestive of PANDAS.

 

If there is no obvious improvement on Ibuprofen, it may or may not be PANDAS.

[ilovedogs]

Yeah...the way I see it...if your child clearly improves on Ibuprofen, then that is highly suggestive of PANDAS.

 

If there is no obvious improvement on Ibuprofen, it may or may not be PANDAS.

Good to know. Maybe I'll try to be more observant and try the Ibuprofen. It's so weird how he just had a minor anxiety episode and I was able to talk him out of it in about 1 minute. He hadn't had an issue for 2 days. Again, it's just so darn predictable so it's driving me crazy!

 

Bonnie

[thereishope]

All disorders, whether PANDAS, classic OCD, anxiety is a roller coaster. Just when you think you have it nipped, something pops back up as a reminder to stay on your toes. Celebrate when it only takes a minute to get him out of it. Do you keep a journal of when his tics or anxiety attacks seem to hit the most? I suggest you start doing it. Especially when it's ones that reasoning doesn't work or it takes more than 5 minutes. Things to note is if he had gotten enough sleep the night before, the reason for the increase (if known), has been under stress and could blood pressure have been raised,and note how else he behaviored throughout the day. Also, something very important to do is to note when he has symptoms of allerges, viruses, etc.

 

How old is he again? When do remember was his last illness (not necessarily strep)?

 

p.s. I went to pandasnetwork.org and I think they do have a link for the Yale Brown OCD test. You said you might ask the therapist about what OCD looks like. I'd look at the test first so you are more prepared for the questions. It might be under diagnostics.It also had a link for a tic test.

[ilovedogs]

Thanks Vickie. To answer your questions: My son just turned 11 and hasn't been ill with anything since last May and that was just a little cold that lasted 2 days. Before that he hadn't been sick since January. So, we don't get sick often around here.

 

I do keep a journal. I write down the time he wakes up, his emotions for the day, tic frequency, and if he had anything out of the ordinary going on including food or supplements. I write down stressors like noting if he had a tennis tournament going on or more schoolwork, etc.

 

Bonnie