Positive strep cultures...and increase in tics?

[vermontmoms]

Ok, we are still very new in this PANDAS expedition. My twins are 6 and one (twin A) was dx w/TS and OCD almost 2yrs ago. However, his tics started at age 3 and his behavior has been very difficult way before 3 but it does get drastically worse when tics flare. His twin bro, Twin B, never had tics until they had strep at age 4 and those only lasted about 2mths and he has been tic free until now. That said, he is very sensitive to textures, dirt on hands, wetness, and smells; he also is very busy and always is moving in his seat, so much so it is very hard for him to sit w/out getting up and walking while eating. In school he is fine but he is very sensitive to any criticism and cries easily.

 

So now to our recent event....On Wed of last week, Twin A came down with Scarlet Fever. This was confirmed on Friday when we went to the peds and were prescribed antibiotics. The ped did cultures on both boys and they both came back today as + for strep. Neither twin has had any tics and only a few behavior issues since Nov. (they both had H1N1 and were put on antibiotics and drastically changed and all tics stopped for 3mths). This last week we have noticed that Twin B has started smelling his fingers after he touches anything. Twin A's behavior has also gone rapidly downhill and his tics are back. His hand tic is so bad that I could barely cut his fingernails; his vocal throat clearing has also returned. Behavior wise Twin A has become very rigid again and literal. He also has severe tantrums and is yelling at us over little things again. His Twin, Twin B, has also started being very negative (ie. calling his twin and random items dumb and losers).

 

The boys and myself are on Amox. for 10 days (we are only on day 5). The antibiotics are not helping the tics/behavior which is increasing in severity daily. Does this suggest PANDAS? We haven't done their titers yet but have the script to go and will go as soon as we get our kit from Dr. Cunningham. We are also doing all allergy panels at that time for both boys too as they both have had excema. What do you suggest? Does this sound like PANDAS? When is the best time to do labs with this recent infection?

 

We will see Dr. Latimer after our panels are done in about 3wks. She is going to see both boys during our initial visit. What can we expect from her? What is the normal treatment if she confirms PANDAS?

 

Thanks in advance for your time and help!!!

Jen

[thereishope]

As for why things aren't improving, it could be the antibiotic. Unfortunately, not many PANDAS kids get better on amox. If it is day 5 on amox and no improvement is occurring, I say call your doctor and tell them the kids are not getting better and you would like a different script It seems like the majoirty of kdis improve on Augmentin or Zithromax.

 

Here is an article that is often posted about teh failure rate of amox and strep

 

http://www.entrepreneur.com/tradejournals/.../169459644.html

[colleenrn]

I would ask to switch all 3 of you to Zithromax today. It is probable in this situation that Amoxicillin is not eradicating the strep. This has happened in my family and we never use Amoxicillin anymore. Amox works with some people, but not others. Amoxicillin cannot penetrate into the tissues to get at the strep once it is intracellular. This is often the reason for Amoxicillin failing. Zithromax penetrates into the tissue.

Colleen

[vermontmoms]

Thanks for the information about the antibiotic, unfortunately we can't get them changed today b/c everything in the DC metro area is closed due to blizzard conditions. When our Peds office reopens, I will forward the article to her and ask to have them changed. How long should I ask that they be on Augmentin or azithromycin? This is interesting b/c with H1N1 they were both given a azithromycin (z-pak) and recovered rapidily. How often can you take Azithromycin? My one son, twin B, has been on it during the first week of Nov. and again over Christmas break (Dec. 23 to 29th) and the other one, twin A, was only on it during the first week of Nov.

 

Given their symptoms and behaviors does it seem like we are battling PANDAS?

 

Thanks again for all your input!

Jen

 

Ps. Can anyone tell me more about what to expect from Dr. Latimer? And what treatments she will recommend for treating PANDAS?

[EAMom]

How often can you take Azithromycin?

 

Our non-pandas (we hope) dd has been on Azith. many times. Augmentin didn't clear her when her sister was very sick (hosp) with PANDAS/ocd/malnutrition/anorexia. Azith. seems to clear her every time (when she's gotten strep--she's an assymptomatic carrier) from school. We re-culture 2 weeks after the last ab dose.

 

Our PANDAS dd has been on Azith. 250mg/day since June 08. She was 44 pounds when we started, now she is 58. Some other kids on this forum are on even higher doses.