pandas or not?

[bmom]

I am sorry to keep rehashing this as I have asked this before and I am still trying to figure it out with new info. Long story short and I am sorry to all who keep hearing it, Son breaks out into tics about 10 days or so after fever, sore throat, etc. Unfortunately I did not take him in as he hadn't had strep in many years and it was only a 1 and 1/2 day sickness. Many tics with great frequency. After many appontments 2 months later I read of PANDAS. tics were almost gone at that point. titres came back normal. Another small set of a tic when I began giving Benedryl for allergies. Stopped and it stopped. A couple of months later sore throat, frequent need to urinate. Took him in-strep and no bladder infection which I had them check due to need to urinate without actual production of urine. Went on Pen V and no tics began and urination stopped. Months later eye tic begins and 2 weeks in he has stomach flu and flu like symptoms where tics peak and then die down after about 1 and 1/2 weeks after illness. This week I notice a tic only here and there mostly when playing video game. I notice it on Sunday eve. Today, fever and illness. The only other times I have noticed is possibly a day of one tic here and there for a total of 3 times since this began a year ago without illness. Although once when he was three he had eye tics for about 3 days. I do not know if it corresponded with illness or not. I noticed that tv seems to make them worse when he is ill, yet when he is not he can attend movie theatres and things like that without a problem. My grandma had Rheumatic fever as a child and his dad has minor tics. Unsure if husband was PANDAS or not. My question I am trying to come to is does this seem to be more PANDAS and should I consider antibiotics or does it not seem to fall into PANDAS? He did have several bouts of strep at the age of 3 and they almost took out his tonsils. Until last year, I had not noticed strep again. He was 8. I know that it is often not clear cut, yet do you all think I am dealing with PANDAS and should go to Dr. Murphy or do you think it does not fit that category? Thanks all. He is on Bonnies supplements currently.

[P_Mom]

Bmom,

In my opinion, it sounds like absolute PANDAS to me, almost identical to what I am going through with my boys. Tics, etc., start suddenly after strep, die down, and then emerge with ANY illness. (although the worst by far is strep). When they are ill and vunerable, there are definite triggers, T.v., stress, excitement, salicylates, foods, etc. These things also can be tolerated well when the boys are well. It just soounds like us SOOOOO much, and we are PANDAS, I would look into that route first if I were you.

 

By the way, so far, when my boys have an illness and increase of tics (big increase), a round of Amox. has cleared them up. (even when it is not strep)

 

Hope this helps.

 

Kelly

[bmom]

Thanks Kelly, I cant remember, are your sons on prophalatic antibiotic? I am thinking, since he did respond to the Pen V he could just do antibiotics when tics emerge, yet his doctor said only if it is strep, not viral. I am going to find a doctor who will work with me. I am just not sure he needs it prophalactic at this point. I would love to try it when I see tics though.

[faith]

By the way, so far, when my boys have an illness and increase of tics (big increase), a round of Amox. has cleared them up. (even when it is not strep)

 

Hope this helps.

 

Kelly

 

 

Kelly, but you don't use antibiotics regularly, only periodically?

 

Faith

[P_Mom]

Yes, we are on prophylactic antibiotic, but, this just started about 3 weeks or so ago. Before that, my son had two flairs that a course of Amox, full dose, ten days, cleared. We are now on prophylactic and have not had a flair yet. If that occurs, whether it be viral or not (amox. cleared my sons tics after a viral, strep started it all initially), we will do a course of Azith and if strep we plan on using Chephalexin. (for three weeks)

 

Kelly

[P_Mom]

I just wanted to add, be careful when using Penicillin for an ACTIVE case of strep. That is what my kids took this summer when they came down with strep, and it did not clear the infection. wITHIN 3 DAYS OF STOPPING THE ANTIBIOTIC, THE STREP CAME BACK AND THEN cHEPHALEXIN CLEARED IT. I HAVE SINCE READ THAT pEN IS STARTING TO FAIL TO CLEAR AN ACTIVE STREP INFECTION IN 25% OF THE CASES. i OFTEN WONDER IF THIS WOULD HAVE ALL OCCURED IF THE STREp WAS KILLED INITIALLY, AS i KNOW BACK TO BACK CASES OF STREP INCREASE THE RISK OF pandas. (sorry, had caps lock on.

[bmom]

Kelly, Can you tell me what made you decide to do the antibiotic preventatively rather than just during flair ups? Is there a reason that this would be better?

[P_Mom]

Sure, we decided to do it prophylactically because with more strep., the more chance of symptoms becoming worse and lasting longer and harder to manage, not to mention the risk of some symptoms possibly becoming permanent. I spoke with Dr. Swedo's assistant from the NIMH, and she suggested prophylactic antibiotic, stating "it works very well." I also read an article by Susan Swedo stating, "the bottom line is this, prevent strep and prevent future exacerbations, etc." something to that effect, it is not a direct quote, I just know it is important to prevent strep. Although we do get increase of symptoms with other illness, they are mainly mild, we just know we had a BAD experience with strep. Also, in weighing the pros and cons to prophylactic or not, the risk of more strep and the damage it can cause far outweighs the risk of the prophylactic. Our Dr. even said that it is "a no brainer" to him, and that the prophylactic is definitely safer as opposed to what strep can do. Let me know if you have any more questions, I am happy to help, I know how it is!!

 

Kelly