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.

On one of my Facebook pages I thought I read that there was going to be a conference in Italy soon & Dr T would speak. If you are on Facebook boards ask there. If not message me and we can try to figure it out

Thanks everyone... the Motrin has worked every night except last night... Usually Motrin helps within 20 minutes. Then I went in and scratched her back and she was fine. As for the movements, she calls them tics. Has only had them about a week... So they are relatively new. She will lay, start worrying about it, and then they happen. LAst night I I felt her legs tensing... So I gave her .5 milligrams in OJ. I'm going to do that for a few days and then give her oj without any in it... Then hopefully it will be out of her mind and we can have it as needed...

Thanks!!! Did you use liquid or pills? I got the liquid and it says 4 drops in juice.... It's totally stuck in her mind... She is trying to use strategies to help but we kinda got lax on those... So they don't seem to be helping her. I know sleep is so important... She woke up with bags under her eyes because I am assuming she is not getting restful sleep... I sat by her last night and scratched her back and I could feel the muscles in her legs squeezing. Not sure if that is RLS

My DD is doing well. We have been better but we have also been worse... For about a week she has had leg tics right before bed. Motrin will usually kick in about 20 minutes after given. She doesn't have these tics during the day. So I kinda of think this seems to be an OCD tic... She gets into bed, which makes her think about it, then she can't stop thinking about it, then she can't fall asleep. She has done this once before with a breathing tic. Only happened at dinner for about a week and then went away. Our Dr. suggest chlonodine (not sure if correct spelling). So far we have been lucky and have only used antibiotics and supplements. So I am curious if anyone has successfully used Melatonin? I really think if we give it to her for a few days, she can maybe get out of the habit of thinking about these leg tics and won't need the melatonin anymore. Any thoughts or experiences are welcome. Thank you, Megan

We began as tics only... It took 4 months for the other symptoms to start... Also, about 6 mos for us to figure out it was PANDAS

When my DD was 2 she coughed for 9 months... No one knew what was going on... None of the doctors ran any type of bloodwork. In my heart I feel it was the beginning of Mycoplasm... My DD is doing well. We are having a bit of a bump in the road but not really sure if I am making a mountain out of a mole hill. DD's onset was April a year ago. For 4 months she only had the tics. With each flare we have seem more OCD. She was doing fantastic on a combo Zith/Augmentin. But last Monday/Tuesday she got sick. Negative Flu/Strep. Right now we are just on zith and I feel like we are seeing more OCD... I am going to contact our Doc...From what I have learned from her last flare is to make sure I am on top of things. Good luck! This is a great board. Everyone is so knowledgeable here! The unknown is so scary! Keep us posted on your little ones too...

My daughter may have been strep triggered but her main chronic infection is Myco... I would run to anyone who can run the additional tests.... By the time my dd had her bloodwork her strep was normal (she had had it 6 weeks bf) But she had extremely high iGg and iGm for Myco. The more time we wasted the worse she got. Myco makes sense in our case. My dd has been sick throughout her life with various ear infections, sinus infections, tonsillectomy at 3, tubes at 5...

That is so wonderful to hear!

So is it feasible to think that my dad could have passed it down to me? And then I too my daughter? As I child I had walking pneumonia but no idea if it was Myco or how I was diagnosed. I can only assume it was. In December I had past Myco levels and my 5 yr old son had current, he ran a fever that week. We do not have PANDAS symptoms.

OMG @hopeny... I thought I was being incredibly paranoid too. My dad was in Korea and had Agent Orange sprayed all over him. As a result he suffered 20 years worth of mini strokes until they left him disabled until he finally passed 4 years ago... Since reading that I wonder of the possibility of it being passed onto my daughter... There is some reading that suggests Myco was used in germ warfare way back then... I also read about the genetically engineered ticks too... Do you have a lyme diagnosis?