Mommy2MCL

We see Dr. d. A pure genius... Very knowledgable. Not many others around Houston... There is a FB page for Houston you could search for.

Any chance allergies could be setting her off? And addition of some type of allergy medicine. My DD flares from allergies. We are in Texas and ragweed is off the charts bad.

We only had the tics for about 3 months before the other symptoms hit...

I think you are doing the right thing in upping antibiotics. I would increase until you see resolution of symptoms and maybe a bit after. Many on this forum say 30 days or more. Now this is in my own opinion but following this treatment. What are you doing to keep her healthy? I think once symptoms resolve you should be working on inflammation, she still has some or no symptoms would appear with illness. Then you need to work on immunity. Vitamins, supplements, probiotics ect... Keeping her as healthy as possible is so important. You may be doing things to support this but may not... We use a super vitamin called IntraMax to help immunity and things. And we have been using essential oils (with miraculous effects) for inflammation. DD got strep 10 day bf school began. She had a mild increase in tics, which were pretty non existent and our last symptom) Last year she was an emotional mess with strep, crying, 12 tics, separation anxiety, and all kinds of othe symptoms. PM if you want. Good luck!

Also, Teeth can be big triggers for PANS kids. The bacteria that will go down into the bloodstream from a cleaning can cause a flare. Please be in touch with your doctor. An additional antibiotic should be added and care taken. Loose teeth can cause flairs too.

Yay! So glad to here. I would say mostly the antibiotic and maybe a tiny bit CBT.

Have you looked into other modes of treatment? Homeopathy or Essential Oils? Diet also would be good. I would think the vitamins and probiotics are good but would want to add in something that is anti-inflammatory for treatment. I think I would also want frequent bloodwork to watch the infections closely. Good luck! Like 'rowingmom' said, trust your gut!

Can he stop if asked? My understanding is that a tic is an urge or a feeling... My daughter taps her feet. It is a distinctive pattern. Most of the time she has to finish it or it upsets her. I consider it a tic...

Thank you, I appreciate that... I am going to research more. So far we have had only positive effects and nothing negative. And the little I looked at on the forum seems about the same... IDK why this has to be so hard... I appreciate this forum so much and all the knowledge it brings.

Hello All, I was wondering if someone could help me understand this and offer some suggestions . DD. was diagnosed PANS in Dec. 2013. She has a IgE of 600. But our only know allergy is from a mold mix on and allergy RAST test. This past spring she did flare and have an increase in tics on some of our most pollinated days. We then put her on Singulair to help with this. The docs latest suggestion is Singulair at night and benadryl. Then Zyrtec in the morning. We did the Real Time Labs Mytotoxin test and it came back negative. She is always itchy and recently broke out into a rash across her chest and back... Is there something else I Should be doing or looking into?

@Cara615 Did you have a prescription for this? @Mayzoo does your child swallow pills? or do you mix it. My dd can swallow pills if they are small. But not bigger ones yet... Is this the one? http://www.amazon.com/Pure-Encapsulations-Curcumin-Bioperine-VegiCaps/dp/B0016LS28E I've been toying with trying this too.

We have started to use essential oils. And I know alot of people have tried homeopathy. I am interested in that as well.

My daughters last cough was in August 2013. She had a horrible sinus infection, which we cleared up by early Sept. 2013. She had very high Myco numbers in December 2013, both IGM and IGG. No symptoms of this either.

Can you tell me more about the sublingual allergy drops? My dd's only known allergy is to a mold test which showed up on a RAST last August. But her bloodwork shows an high IGE. Around 600 Last week we added singulair int her meds and have seen even more improvement. So I don't know if we are dealing with hidden allergies. We are also waiting on Mycotoxin testing results through Real Time Labs

Ask for an EKG... A normal peditrician can even request it. The side effect of the Zith should show up in that. And of course if your child complains of heart related or chest pains on it let your doctor know.