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daily antibiotics or treat with flare?


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Background: dd had "THE" episode early this year. The REALLY bad one that changed her entire life. Went about 3 weeks with no one knowing what to do then finally a PANDAS diagnosis. Started antibiotics for a normal course and an ssri.

Still on SSRI and no antibiotics, only have given when she experiences a minor symptom (just a few sniffles has gotten her antibiotics because I don't want to take a chance). So she has been on antibiotics (5 day azitromyicin.) 4 times since March as a "just in case" because symptoms looked like it could go somewhere.

 

Do you this will continue to work or should she be on a daily antibiotic? Her doctor does not want to do that because he said it will mess up her "flora"/good bacteria and could mess with her immune system.

 

Any thoughts? pros and cons of just treating?

or pros and cons of daily penicillin. Would it make her less resistant to be able to fight things off eventually on her own?

 

So far she is a lot better. Still left with the obsessive part of ocd, but therapy is helpful for her with that.

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Well, early on in this, my son only got abx when he had an infection. In subsequent exacerbations, we caught it and started abx within 12 hours of onset and he still got very bad and recovery still took awhile. So, I am a supporter of prophylactic abx if the child can tolerate it. I eventually did find a doctor that would give my child penicillin as a prophylatic and he has been on it daily for over a year now.

 

How bad are the remaining symptoms and how long has it been? Do you think she could benefit from a longer course of a treatment dose? Do you believe the SSRI's are helping? I only ask that since I know some parents who realized the SSRI actually started to contribute to behaviors and symptoms.

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I wish we would never had started the SSRI, but she was sooooo bad that I was desperate for anything to help and they kept pushing it. I think it was hard on her for a week and most people would probably have stopped then, but I don't really know if it was the PANDAS continuing or if it was the SSRI. She has been on it since April and had one dose increase and the dose increase did seem to help (more). I am probably going to wean her off of it at the start of next summer.

I have not allowed her to really get sick yet (treated so quickly) and her ocd fear of getting sick causes her to use hand sanitizer a lot which really is fine by me!... so I don't know how she would be if she did get a full blown sickness. She is now (7 months later) soooooooooooooo much better I'm just afraid of rocking the boat, but also afraid of not taking precautions.

Remaining symptoms are only: fear of throwing up, fear of hearing about her friends feeling sick, and fear of eating sugar/junk food. We work on those fears each week, she recognizes the fear and understands it, but it is still hard for her.

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And she is in CBT or ERP for those remaining symptoms? Is she losing weight due to those fears? When OCD is surrounding food, it could actually be a bigger problem than one realizes since a lot can be obsessions and not things that you, as the parents, sees or realizes. Kids, even if they are actively participating in therapy, may not tell you everything they are worried about, doing, thinking. Same with fear of germ, dirt and illness. It encompasses a lot.

 

I think me reading your experience from an "outside" point of view sees the remaining OCD as still significantly present and affecting her life. The list of OCD may not be long, but the OCD she does have is affecting her life. Yes, at some point in recovery, therapy may be able to help. We had to do that with my child's third exacerbation, but I also wonder if there could still possibly be something lingering that could benefit from a longer course of treatment strength antibiotics.

 

Also, I am not judging you for starting the SSRI. I know some kids that have benefitted from one early on in an exacerbation, but dosing is important. I also know some parents (and I totally get this) that are scared to change anything because the child is showing improvement and the thought of rocking the boat is something the parent cannot bare to even possibly do. But I do want to throw out there that SSRI can negatively impact some PANDAS kids and they may need to be dosed different. http://www.primarypsychiatry.com/aspx/articledetail.aspx?articleid=561

 

Have you tried Omega 3's? That may also help with some of the OCD.

 

As for the possible prophylactic....IMO...if your child is still having PANDAS related symptoms...if she does have another full fledge exacerbation while symptoms are already present, the foundation is there to possibly get really bad.

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My DS went a yr w/out diagnosis and that was the worst yr of our lives. I would never want to revisit it again. My DS has been on abx for a yr, w/out interruption. He is currently on prophylactic dosing post IVIG and will remain on it until at least next May and I may very well keep him on it for a longer period of time.

 

I agree w/ Vickie, it sounds as if there are symptoms that are still significant in her life. I'm no doctor, but based on our experience, I would consider prophylactic dosing to possibly ward off another major episode.

 

Your doctor is worried about messing up her gut flora. I would be more concerned about her brain and the effects of PANDAS. I haven't seen gut issues in DS, after a yr of abx. Although that is a possibility. He takes Florastor 2x a day and that seems to be working for him.

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Just my thoughts on this-

I favor prophylaxis. While symptoms are a result of autoantibodies rather than infection, these antibodies are not just produced as a result of infection, they are produced upon exposure to antigen markers on microbes. More antigen exposure increases antibody production. Most abx do not destroy bacteria- just weakens them or interferes w/ reproduction so the immune system can fight them off easier. So, I think proph. abx will help the body keep the #s of autoantibodies lower, reducing the chances of a flare up.

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