PANDAS treatment - what next ?

[michellel]

Hi everyone,

 

I'm new here and was hoping to get some advice.

 

My 10 year old son has been having tics for about 9 months now (mostly humming, throat clearing, coughing).

I took him to a pediatric neurologist, who recommended tests for ANTI-DNASE and ASO titers, which both came back high. His ANTI-DNASE was 340 (ref <=170), and his ASO titer was 168 (ref < 150).

 

The neurologist recommended that he take Amoxicillan 3x a day for 10 days. My son finished that on Monday. For the past few weeks (before and during the antibiotic) his tics had been on the milder side. However starting on Wednesday, they have returned to a moderate range.

 

My question is: The 10 days of Amoxicillan obviously didn't cure the tics. Should I ask the neurologist if we could try a different antibiotic (Azithromycin?) or does anyone have any other suggestions?

 

I've tried eliminating milk, wheat, TV, and video games for periods of time with no obvious effect. I've also tried some supplements like enzymes, probiotics, multivitamins, vitamin C, and magnesium, which also did not have an obvious effect. Currently, we just minimize dairy and wheat and eat a healthy diet.

 

Thanks in advance for any suggestions! I am just heartsick thinking about antibodies attacking his brain. BTW, his younger brother is on the autism spectrum.

 

Thanks again!

Michelle

[EAMom]

Hi Michelle,

 

Did they ever culture your son's throat (it is important to do 48-72 hour culture if rapid is neg)...man that drives me nuts when docs do titers but no cultures. Strep carriers (having strep long term in throat without pharyngitis) can have PANDAS.

 

Titers are only part of the picture in diagnosing PANDAS: on one hand, titers can be normal (or even low) and your child can still have full blown psychotic PANDAS (as my dd did). On the other hand, a lot of completely normal (non-PANDAS kids) will have high titers.

 

Did your son have strep (or anyone else in your family have it) preceding the tics (9mo. ago)? Of course, part of the difficulty is that some kids have strep w/out symptoms....some have fever but no sore throat, others have absolutely no symptoms.

 

Does your son have any other PANDAS symptoms beside tics? (eg. OCD, depression, increased anxiety, increased sensory defensiveness, emtional lability, tantrums, other weird or "out of character" behavior)?

 

When my daughter finally went into remission on Azithromycin in June (Amoxicillin etc. for 3mo. didn't help) it took 3 days for mood to improve, 10 days for OCD/anorexia nervosa to resolve, but her tics took about 6 weeks to go away. Diana (on this forum), whose son possibly had the same strain of strep (we live 20minutes away) found this same pattern...a big improvement after 10 days of Azithromycin but tics took much longer to go away. I suspect it takes a while for the inflammation in the basal ganglia to decrease and the strep toxins/antibodies to dissipate...hence I wouldn't actually expect all symptoms to disappear overnight, esp. if the PANDAS has been going on for months or even years. I don't know if the "tics taking longer to go away" is typical with most PANDAS cases or just ours. (For both our kids, tics were the least of our worries.)

 

We also found that ibuprofen helped dd's symptoms when she was really bad. We kept her on advil plus the azithromycin for June/July. We discontinued the advil in Aug. She is still on Azthromycin (and a low dose of prozac).

 

Also, have you noticed any changes in tics/behavior after dental cleanings or extractions?

 

Also, IMO, I don't find neurologists to be the most informed docs re PANDAS...maybe b/c they see the predominently tic-ky kids, whereas the psychiatrists (and Dr. K) see the severe PANDAS kids with debilitating OCD. Our pediatric neurologist says my dd was only the 2nd case she has seen in the past 10 years that she is sure is PANDAS....it's really not a disease she has a lot of expertise in.

[michellel]

Hi Michelle,

 

Did they ever culture your son's throat (it is important to do 48-72 hour culture if rapid is neg)...man that drives me nuts when docs do titers but no cultures. Strep carriers (having strep long term in throat without pharyngitis) can have PANDAS.

 

Titers are only part of the picture in diagnosing PANDAS: on one hand, titers can be normal (or even low) and your child can still have full blown psychotic PANDAS (as my dd did). On the other hand, a lot of completely normal (non-PANDAS kids) will have high titers.

 

Did your son have strep (or anyone else in your family have it) preceding the tics (9mo. ago)? Of course, part of the difficulty is that some kids have strep w/out symptoms....some have fever but no sore throat, others have absolutely no symptoms.

 

Does your son have any other PANDAS symptoms beside tics? (eg. OCD, depression, increased anxiety, increased sensory defensiveness, emtional lability, tantrums, other weird or "out of character" behavior)?

 

When my daughter finally went into remission on Azithromycin in June (Amoxicillin etc. for 3mo. didn't help) it took 3 days for mood to improve, 10 days for OCD/anorexia nervosa to resolve, but her tics took about 6 weeks to go away. Diana (on this forum), whose son possibly had the same strain of strep (we live 20minutes away) found this same pattern...a big improvement after 10 days of Azithromycin but tics took much longer to go away. I suspect it takes a while for the inflammation in the basal ganglia to decrease and the strep toxins/antibodies to dissipate...hence I wouldn't actually expect all symptoms to disappear overnight, esp. if the PANDAS has been going on for months or even years. I don't know if the "tics taking longer to go away" is typical with most PANDAS cases or just ours. (For both our kids, tics were the least of our worries.)

 

We also found that ibuprofen helped dd's symptoms when she was really bad. We kept her on advil plus the azithromycin for June/July. We discontinued the advil in Aug. She is still on Azthromycin (and a low dose of prozac).

 

Also, have you noticed any changes in tics/behavior after dental cleanings or extractions?

 

Also, IMO, I don't find neurologists to be the most informed docs re PANDAS...maybe b/c they see the predominently tic-ky kids, whereas the psychiatrists (and Dr. K) see the severe PANDAS kids with debilitating OCD. Our pediatric neurologist says my dd was only the 2nd case she has seen in the past 10 years that she is sure is PANDAS....it's really not a disease she has a lot of expertise in.

 

 

 

Hi! Thanks for your response!

 

My son did have a high fever and sore throat about 1.5 years ago, but unfortunately I did not take him into the doctor because the sore throat disappeared in about 24 hours. He has not had a throat culture in quite a while, so thanks for mentioning that. I wish I had done that before he took the Amoxicillan.

 

My son's most noticeable symptoms are his tics, but he definitely is more emotional and anxious than he used to be. I wouldn't quite say he has OCD, but he has picked up some other weird behaviors which just come out once in a while (ie: a jump when a door closes) . We actually have a dentist appointment tomorrow, so I'll see if his tics increase after the cleaning.

 

I was pretty happy that the neurologist knew about PANDAS and suggested testing the titers, since my pediatrician was no help at all. Is there a different type of doctor I should be seeing? BTW - I'm in CA about 1 hour south of San Francisco.

 

Thanks again!

Michelle

[EAMom]

Michelle,

 

If your son just went off abs on Monday you might not see much when you go to the dentist even if it is strep/PANDAS...the strep may have been "taken out" by the amoxicillin, at least temporarily...watch and see what happens anyway.

 

Assuming you stay off abs for now, I would do a throat culture on your son (48-72 hour if rapid is neg) in about 3 weeks, to make sure the strep is not still there (if you culture immediately after abs then you may get a false neg.)

 

If your son had more severe OCD symptoms, I would rec a child psychiatrist (I am also in SF bay area). Most pediatricians (unless you get lucky) are not well-informed re PANDAS. Does anyone else have any suggestions for docs to see? I have heard of some going to immunologists. We went to a ped. rheumatologist to get info. on abs (due to correlation of PANDAS to strep/rheumatic fever) although she wasn't terribly well informed either...I think it did make our reluctant pediatrian feel better about the antibiotic prophylaxis.

 

A lot of people do phone consults with dr. K in chicago. Diana (on this forum, also in bay area) is planning on doing IVIG with him soon. Stanford won't do IVIG for PANDAS....but that may be getting ahead of yourself...

 

I wish Stanford (Packard) were more of a resource for PANDAS...at least publically, they seem to be in denial on the matter.

[EAMom]

I would be more suspcious of PANDAS if the fever was more closely tied to the onset of symptoms. Of course he could have had an otherwise assymptomatic strep infection 9-10 mo. ago...hence the difficulty with diagnosis!

 

I guess what I would do is:

1) see what happens with the dentist

2) get throat cultures on other family members (do 48-72 hour culture if rapid is neg) to check for carriers/evidence of strep in the household (other children are more likely to be carriers than adults)

3) if you son is otherwise okay/stable, I'd stay off abs for now (since this isn't a clear cut PANDAS case IMO) and get a throat culture in 3 weeks.

 

What do you think? You could always consider a longer trial (2-3 mo?) with something like Azithromycin later, even if the cultures are neg, (assuming you can talk the neurologist into a rx!)...to see if that helps the tics/behavior changes. I just think it would be nice to get the cultures first and you can't really get accurate cultures while on abs.

[michellel]

I would be more suspcious of PANDAS if the fever was more closely tied to the onset of symptoms. Of course he could have had an otherwise assymptomatic strep infection 9-10 mo. ago...hence the difficulty with diagnosis!

 

I guess what I would do is:

1) see what happens with the dentist

2) get throat cultures on other family members (do 48-72 hour culture if rapid is neg) to check for carriers/evidence of strep in the household (other children are more likely to be carriers than adults)

3) if you son is otherwise okay/stable, I'd stay off abs for now (since this isn't a clear cut PANDAS case IMO) and get a throat culture in 3 weeks.

 

What do you think? You could always consider a longer trial (2-3 mo?) with something like Azithromycin later, even if the cultures are neg, (assuming you can talk the neurologist into a rx!)...to see if that helps the tics/behavior changes. I just think it would be nice to get the cultures first and you can't really get accurate cultures while on abs.

 

 

Thanks! I think that sounds like a good plan, although I'm not looking forward to doing a throat culture on my younger son.

 

Michelle

[samra]

Hi everyone,

 

I'm new here and was hoping to get some advice.

 

My 10 year old son has been having tics for about 9 months now (mostly humming, throat clearing, coughing).

I took him to a pediatric neurologist, who recommended tests for ANTI-DNASE and ASO titers, which both came back high. His ANTI-DNASE was 340 (ref <=170), and his ASO titer was 168 (ref < 150).

 

The neurologist recommended that he take Amoxicillan 3x a day for 10 days. My son finished that on Monday. For the past few weeks (before and during the antibiotic) his tics had been on the milder side. However starting on Wednesday, they have returned to a moderate range.

 

My question is: The 10 days of Amoxicillan obviously didn't cure the tics. Should I ask the neurologist if we could try a different antibiotic (Azithromycin?) or does anyone have any other suggestions?

 

I've tried eliminating milk, wheat, TV, and video games for periods of time with no obvious effect. I've also tried some supplements like enzymes, probiotics, multivitamins, vitamin C, and magnesium, which also did not have an obvious effect. Currently, we just minimize dairy and wheat and eat a healthy diet.

 

Thanks in advance for any suggestions! I am just heartsick thinking about antibodies attacking his brain. BTW, his younger brother is on the autism spectrum.

 

Thanks again!

Michelle

[samra]

my heart goes for you Michelle. My eight year old son had severe vocal tics when he had strep in February. I asked the pediatrician to prescribe antibiotics about a month later. He took augmentin for couple of week when his tics got so mild. They were mild for a while but flared up last week. I have tried magnesium, tenex for few days with no results. He is on augmentin again for 10 days. I have been researching since then. We have an appointment with Duke pediatric neurologist.I will ask for long term penicillin.

I cry everyday and spend all of my evenings doing research. I have been very careful about his diet and started no dairy and wheat couple days ago.

I will try everything and will post the results.