Trying to understand tics/PANDAS please help

[Krista]

In late July our 8 year-old son suddenly started breaking out in persistant tics (neck jerking, shoulder shrugging, knees banging together, jaw clenching) and I don't think he has had a tic free waking hour since. Up to this point I had never seen any kind of ticcing. I saw my family doctor in August and finally got an appt with a pediatrician this week. We talked about PANDAS and she sent him for an ASO Titer test and a throat swab. The ASO Titer blood test came back with a reading of 278 which she considered significant, and the throat swab is negative. She said that in the last several months she has seen 3 other kids with sudden onset of tics and elevated ASO Titer tests. She has put him on a course of penicillin. If it is PANDAS should the penicillin work, do you think I should see a reduction in ticcing. I have been reading a little about PANDAS but don't really understand it. I would be grateful for any words of advice, or similar stories. Thanks.

[Chemar]

Hi Krista

 

I moved your post here to the PANDAS forum as the parents here really are best experienced to answer your questions

 

hope this helps

[P_Mom]

My opinion....get on something else besides Penicillin...and for longer than the 10 days.....go for atleast 3 weeks.....I think Keflex would be the best choice....or Augementin. Penicillin fails alot lately in eliminating active strep.....it did with both my kids.

[Krista]

Thanks for the advice. He is actually taking amoxicillin.

[dcmom]

Krista-

 

First of all, it is great that you have a ped that will work with you.

 

If I were you I would try to hit this hard and fast. I would try two weeks of Augmentin, if that doesn't work, I would proceed to a month of daily zithromax. At the same time I would do a steroid burst, which is 2 weeks treatment and 2 weeks tapering off.

 

These kids have a hard time fighting the strep. We don't know, does it go intracellular- if so you need the zithromax. This can also help to modulate the immune system. The steroids will address th brain inflammation.

 

Where do you live? Maybe your ped could consult with Dr Latimer?

 

I would also suggest having a blood test for anti neuronal antibodies done by Dr Cunningham. (email her for the kit, have the blood drawn locally, overnight to her lab for testing).

 

Best,

 

Eileen

[sf_mom]

In my opinion, hit the bacteria hard until all symptoms are gone! If a particular antibiotic isn't working don't be afraid to ask for a change... certain strains of strep can be difficult to eradicate. Our son is 5 1/2 years old, 43 pounds and we saw immediate improvement with 250 m.g. of Azithromycin per day. He was about 90% better after about 30 days on antibiotics. He received IVIG two weeks ago and he is ALMOST 100%. We are now able to attribute certain behaviors to the underlying illness that we didn't realize. Huge improvement in fine motor skills, restlessness, short term memory, saying Um, Um, Um when he lost his train of thought..... and still unraveling what might have been PANDAS and his true personality. His ASO was 244... one month after being sick, his ASO titers dropped to 205 as he improved. I look forward to retesting him when he is symptomless.

 

Where do you live... as our son got sick around the same time?

[ChildoftheKing]

Hi - I am new here and can't seem to post a new topic, but my questions fit in here so I'm hoping someone will help. My 8 year old daughter has had tics since she was 4 - she stopped sucking her thumb and suddenly was a chronic sniffer. That went away, then she started clearing her throat constantly. This has gone on for the past 4 years, her tics changing but recently getting worse (opening her mouth over and over, puffing her cheeks, sqeaking noise, finger flicking, kicking her legs). She does not have any emotional/behavior changes, however, but her doctor found swollen lymph nodes throughout her body on her regular check up this week. He ordered a chest xray, urine culture and blood work. All came back normal. My question is, if it is PANDAS, what specific tests need to be ordered? He ordered a Anti-Streptolysin Screen, which came back negative. He did not do a throat swab. He knows of PANDAS, but I don't believe he knows much about it's diagnosis or treament. I think he will want to refer her to a pedatric neurologist, which I'm okay with but want someone who knows enough about PANDAS to either diagnose and treat her or totally rule it out. If anyone knows of any qualified docs in the Portland, OR area I would really appreciate it!

Thank you!

[peglem]

To post a new topic- just above the screen that lists threads, on the right hand side, it says "new topic."

 

I don't know a doc in your area- West coast seems to have fewer PANDAS knowledgeable docs- I'm in AZ, and here too, there is not much. I'd get the doctor to do the swab and if the rapid strep test comes up neg. have it cultured for 72 hours. Many, many of our kids have low ASO titers. The testing I'd have done is immune testing- IgG, IgA, IgM, IgG subclasses, streptococcus pneumonia titers. Especially with the low ASO (because if your child has/had a strep infection, why didn't the immune system make antibodies to this?) there may be an immune deficiency.

[P_Mom]

Ditto my previous post for Amox., too.

[KeithandElizabeth]

childoftheking:

 

I will PM you information later about doctors in Portland. My good friend who lives in Portland has a good friend who is currently dealing with PANDAS and I will send you her doctor information.

 

elizabeth

[citygirl]

I would be interested in the info as well - could you forward as well? Thank you so much.

 

childoftheking:

 

I will PM you information later about doctors in Portland. My good friend who lives in Portland has a good friend who is currently dealing with PANDAS and I will send you her doctor information.

 

elizabeth

[ajcire]

Ditto my previous post for Amox., too.

 

 

Do you mean the amox didn't work for your child?

[thereishope]

I'd just like to add to the newcomers that there is a pinned thread at the very topic of the initial topic board. In that thread you will see a lot of helpful info including a list of some doctors, links to studies, and more. you can also visit www.pandasnetwork.org for more info on PANDAS. Pass that website info onto your doctor for viewing.

[P_Mom]

No...Amox. did work for my older son (thankfully)...however, in clearing a current infection..it has shown to fail too many times. I will not accept Amox. or Penicillin for an ACTIVE strep infection.....I would insist on Augmentin or Keflex....longer courses for PANDAS kids...and make sure it is a high enough dose.