What would you do now?

[AmySLP]

My 5 year old daughter came home from school today with facial tics and chorea-like movement of her hands (moving in a figure 8 pattern). SHe has had a throat clear, soft voicing sort of tic for a week (and I thought it was maybe allergies). She also complained of a mild sore throat last friday, Sat & Monday. I questioned a blotchy rash on her body the last few days & some pimple-like spots on her bottom since then as well.

 

Her story in a nutshell. Allison was diagnosed with PANDAS April 2009 by Dr Latimer after nearly 7 months of resistant strep. SHe had no classic strep signs ever (except when she got the Epstein barr virus in the midst of all this). Her PANDAS symptoms were facial tics, throat clear tic, chorea-like tongue movements, emotional lability, repetitive behaviors, and fears. Anyhow, a new pediatrician saw her in March 2009 just 3 weeks before our visit with Dr Latimer and put her on Clindamycin. It worked and all signs of PANDAS began to disappear. Titers ordered by Dr Latimer in early April were normal, despite months of positive strep tests. We were so happy with her remission for nearly a year, until this past March when she was strep positive again only picked up because a hive like rash covered her body, so I asked the doctor to test.

 

What would you have your doctor do? He's going to ask me so I want to be prepared.

Would you test for strep? Would you ask for labs? If so, which ones? What antiobiotic would you use? I'm thinking Azithromycin b/c we have never used that before.

 

Thanks so much,

Amy

[memom]

My 5 year old daughter came home from school today with facial tics and chorea-like movement of her hands (moving in a figure 8 pattern). SHe has had a throat clear, soft voicing sort of tic for a week (and I thought it was maybe allergies). She also complained of a mild sore throat last friday, Sat & Monday. I questioned a blotchy rash on her body the last few days & some pimple-like spots on her bottom since then as well.

 

Her story in a nutshell. Allison was diagnosed with PANDAS April 2009 by Dr Latimer after nearly 7 months of resistant strep. SHe had no classic strep signs ever (except when she got the Epstein barr virus in the midst of all this). Her PANDAS symptoms were facial tics, throat clear tic, chorea-like tongue movements, emotional lability, repetitive behaviors, and fears. Anyhow, a new pediatrician saw her in March 2009 just 3 weeks before our visit with Dr Latimer and put her on Clindamycin. It worked and all signs of PANDAS began to disappear. Titers ordered by Dr Latimer in early April were normal, despite months of positive strep tests. We were so happy with her remission for nearly a year, until this past March when she was strep positive again only picked up because a hive like rash covered her body, so I asked the doctor to test.

 

What would you have your doctor do? He's going to ask me so I want to be prepared.

Would you test for strep? Would you ask for labs? If so, which ones? What antiobiotic would you use? I'm thinking Azithromycin b/c we have never used that before.

 

Thanks so much,

Amy

 

Hi Amy,

 

I am so sorry you are experiencing a relapse. It strikes fear in most parents when the tell tale signs resurface. It is unclear to me by your post if your dd is currently on antibiotics or not. I think that if she has in the past been titer normal despite culture positive strep, I would not consider titers to try and confirm current strep. Given sore throat, I would test there first. Despite the results, I would absolutely request Azith or Augmentin for at least a month. In the meantime I would consider testing everyone in the house to make sure noone is a carrier (blood titers and throat cultures). You are fortunate to have seen such good results on the Clinda, not needing steroids, or IVIG. If you don't get improvement I would consider a call to Dr. Latimer. I would also take a picture of the rash and bumps on her bum as I would want someone who has seen scarlet fever see if it may be that.

 

Good luck, keep us posted. I would be aggressive with antibiotics and not stop them after a short burst.

 

Ellie

[AmySLP]

We started her on Azithromycin for 5 days at this point and her pediatrician wants me to call him today to talk about what we are going to do after this. I will try again to reach Dr. Latimer, but last time I spoke with her office staff they thought we needed to go back for a F/U office visit. She had recommended Azith prophylaxis. I was thinking maybe I should try Dr. B in Connecticut as this is closer for us. Wondering how long it takes to get into see him.

 

I feel a little more unsure b/c with this return of PANDAS she has many more symptoms, much more pronounced than EVER bofore. Watching her last night was painful. She had more and more tics and repetitive behaviors as the hours went on- head nodding, biting her lip and then rubbing under her nose, shaking her right hand in the air, and that dance-like movement with her hands. I did give her a dose of ibuprofen & started the antibiotic last night. I hope that things are calmed down today so she can attend her class field trip-what timing!

 

As always I appreciated your input,

 

Amy

[thereishope]

So, was she on the Clindamycin as a prophylactic? If not, I would say, if it worked before, use that one again. Every child does seem to have their "right antibiotic". If she was already on Clindamycin, then I'd probably switch to Azith like you said. As for the symptoms begin worse this time than the last, unfortunatley that happens. If there are any other factors (ie allergies) in adddition to the strep, that would cause things to be worse than before as well. So, look at the whole picture and see if there can be more than one problem. As usual, test everyone in the family now.

 

If you take her for a strep test, remind the doctor that she is on antibiotics so she runs the chance of a false negative.

[saidie10]

i wish i had answers for you but i am still looking for my own for initial treatment, not recurrent. i hope some of these fine parents can lead you in the right direction. good luck.

[tpotter]

Amy,

 

I would definitely either do the f/u with Dr. Latimer or go to Dr. B (I know he's closer.) The only thing is that Dr. L. has already seen her, done everything else, and may have a better idea what to do at this time (I know that Dr. B. is supposed to be great, too.) Maybe you could get an appointment with Dr. B. (if it takes a long time), and in the meantime, do the f/u with Dr. L, so she gets the tx. She may need a steroid burst and/or PEX or IVIG at this point, and you need a good dr who can tell you (Dr. L does both, while Dr. B. does IVIG only.)

[FallingApart]

I HATE PANDAS!!!

 

Ugh, we are going through somewhat of a similar situation over here. A question I am coming to is: "can these children be on their appropriate antibiotic every day for the rest of their lives?" By appropriate, I mean the one that works for them. And people with rheumatic fever are on abx every day - can our children do the same?

 

Reading your post, Amy, makes me wonder this for your daughter as well.

[matis_mom]

We started her on Azithromycin for 5 days at this point and her pediatrician wants me to call him today to talk about what we are going to do after this. I will try again to reach Dr. Latimer, but last time I spoke with her office staff they thought we needed to go back for a F/U office visit. She had recommended Azith prophylaxis. I was thinking maybe I should try Dr. B in Connecticut as this is closer for us. Wondering how long it takes to get into see him.

 

I feel a little more unsure b/c with this return of PANDAS she has many more symptoms, much more pronounced than EVER bofore. Watching her last night was painful. She had more and more tics and repetitive behaviors as the hours went on- head nodding, biting her lip and then rubbing under her nose, shaking her right hand in the air, and that dance-like movement with her hands. I did give her a dose of ibuprofen & started the antibiotic last night. I hope that things are calmed down today so she can attend her class field trip-what timing!

 

As always I appreciated your input,

 

Amy

Hi Amy,

I am glad you got her on some kind of antibiotics, but I would make sure she stays on them for a good long while. I would be very concerned specially since the symptoms are stronger. Also, I would be consider whether or not to pull her out of school for a few days, most likely, this is where she caught it. Try to get even a phone consult with a PANDAS specialist, or even with any neurologist. Whatever you do, get a longer antibiotic prescription. My son has been on different abxs since July 09, and I'm not planning to take him off them any time soon!

[FallingApart]

Mati's mom: what abx is your son on and how frequently? Have you also done IVIG?

[matis_mom]

Mati's mom: what abx is your son on and how frequently? Have you also done IVIG?

He is currently on Augmentin XR twice a day. We are looking at doing plasmapheresis in July, just trying to make sure we are all clear of strep before we go that route!