Mommy2MCL

Yes. We have had all kinds of sinus, ear, coughing issues. All three of my kids and myself. I am worried bc from what I read it is really hard to get rid of and we are trying to eradicate it from 4 of us. We will go see him tomorrow and pray the Zithromax gets rid of it all. I've had so many docs tell me I am crazy. It is nice to be on the next leg of our journey

Myco P is Mycoplasma Pneumonia or Walking Pnemonia. It was run in the gamete of blood tests that our dr. ran.

After 7 months, 1 pedi, 5 specialists we have confirmation that my DD, 8 has PANDAS/PANS. I can breath for the 1st time in months and I can scream I am not CRAZY!!! Now to the treatment... Or PANDAS dr tested the whole family. My husband is positive for strep. My PANDAS daughter, myself, and two boys are either active or past for Myco P. So that seems like our main Nemisis. I am at the pharmacy waiting on Zithromax. But would love to hear your stories and how you dealt with Myco P. Megan

What about showing him the alternatives? That if he doesn't take the meds orally then it could possibly be through a shot or IV? Or talk to him about kids who have to go into the hospital because of refusal to take meds. IS he losing weight? Are you being seen by a PANDAS specialist? Will he take Motrin? maybe that can calm him enough to take the abx. Good luck to you momma!

PM you...

powwow- Are you in Texas too?

PM you.

I would also say they are vocal tics. I joined a TS board on FB because that was our original diagnosis... IT sounds like many of the things they describe. Does he realize he is doing it? Can he stop?

Thank you ladies for sharing... It is also so much to understand and learn about. IT is so easy to want get frustrated because they can be so irrational... I appreciate you telling me your stories and it helps put things into perspective...

It has been a very short time that I have been in the PANDAS word. DD's tics started overnight last night 8 weeks after a strep infection. The main symptoms she presented with are motor & vocal tics, separation anxiety, excessive worrying, anxiety, compulsions, and emotional liability. We luckily have only had 3-4 main flares since April but each one was increasingly disturbing. After research her symptoms sounded so much like PANDAS. We were able to see a local PANDAS Dr and he agreed with our thoughts. On Nov. 7 we began Augmentin and have been on it since. While the wax and wane of the symptoms is unnerving in the long run she is 90% better. The main reason for my question is to ask about others who have experienced the emotional liability. What i have noticed is that it is triggered by the same things. Her main triggers are lack of friends, missing me, wanting me to come eat with her at school, no one loves her. and she is consumed in tears and sadness. These episodes lasted for 4-5 days where I kept her home because there was no way to calm her down to get her to school to 30 minutes bf bed. So I was just thinking that it's been several days since we have had an episode. This morning at breakfast the tears begin. She wants me to eat lunch with her (Dad went yesterday bc he was off) her stomach hurts. I immediately gave her Motrin. 10 minutes and the crying had stopped and she was back to her old self... With past flares we have talked about how the Motrin helps so she knows why it is given. So my question is do your children have the same triggers? I am trying to see correlate if her flares will all relate back to the same thing. Or if she was just being an emotional 8 year old this morning Could this have been a very short flare? And bc she got the Motrin is was psychological and she was able to put herself back together? Is your child's emotional liability always triggered by the same things? Sorry this is so long... Nothing in PANDAS is simple to explain :-)

How old is she? My thought would be is that she tries her hardest to hold it in everywhere than at home... Then she lets it out. My daughter didn't show any signs of the emotional roller coaster she was on at school but at home she was a mess. And when she was at her worse she did show it in front of her grandparents. IS she in a flare now? Have you tried Motrin?

When choosing make sure you know that they are on board with PANDAS DR. We made the mistake of going to a mainstream neurologist who said I googled too much and diagnosed my DD with Tourrettes. Since then we have found a PANDAS specialist and are getting correct treatment.

We are on Day 26 of continuous augmentin. Happy to report in the last hour I haven't seen one tic. But as we have seen in the previous 4 weeks I should see an increase of tics by the end of the week. Hopefully the increase gets smaller and smaller. We have also seen 2 'flares' Right at bedtime. Mainly emotional liability. I expect one of those too! It is nice to see such positive outcomes.

Before we thought PANDAS could be our diagnosis, we noticed my daughter responded well to antibiotics on 3 occasions. Zithromax and Amoxicilian. On the Zithromax we did two rounds almost straight. After this we noticed the marked improvement. And most recently on Amoxicillian on day 8 or 9. Since seeing the PANDAS specialist we were giving Augmentin. My daughter has stabilized. We see days where there is almost no ticcing to days where it is increased. From what I am slowly finding out that this is par for the course when dealing with this... I think it is normal that you don't see improvement yet and I wouldn't feel too discouraged yet.

We take Florastor with Augmentin. My daughter has had no ill side effects so far.

It's nice to see you are experiencing a few of the same things we are. We have been on Augmentin for almost 4 weeks. My dd will have several days on minimal ticcing and then it will increase. I get so worried and 2nd guess the thought of PANDAS. There is so little out there to see others experiences. Hoping you are able to set forth a good game plan with the dr.

Yeah... When we had my DD tested for allergies as we were trying to figure this all out. The only thing she was allergic to was a mold mix... Our PANDAS Dr. said he was going to add mold into all of her blood work to see if it could be a contributing factor.... If it comes up positive we will have to have our house checked... It's only 11 years old but we did have Hurricane damage. And I have read other stories on here about mold too...

Just out of curiosity how old is the school your child is in? Our doc mentioned a school that had 4 children with PANDAS in it and there was comprehensive mold testing. I believe he is trying to have the school shut down because of the findings.. It may be of no relevance but it also may shed light on what effects your son also...

Anyone?

We are 10 days on Augmentin. Sat and Sunday she seems to have more ticcing than she has had since we started. She was on Amoxocillian for 10 days... 4 days off before we got Augmentin. Otherwise she is fine. Great mood ect... Do kids with PANDAS herx? I looked it up but read it dealt with Lyme... Just worried I guess... Also I thought her tics were worse last weekend but then resolved and got better... What an emotional roller coaster...

We are still waiting on blood work but we have seen triggers other than strep. Here is a bit of our timeline: Strep last February Sudden Eye Rolling tic end of April Sinus infection triggered very rapid eye rolling in August Dentist appointment to put on a crown (release of bacteria) triggered emotional liability, separation anxiety Strep @ end of October triggered emotional liability and separation anxiety Antibiotics that were given for sinus infection and 2nd strep show improvement. Right now we are on Augmentin. Her mood has stabilized. No separation anxiety. Tics have decreased but are still there but nothing like they have been in the past and much better than they were. It took me 6 months to realize what we were dealing with because we only had the onset of tics for so long.

Where are you? Do you have a PANDAS specialist? I really think the way it sounds you should pursue that... It took my daughter until day 8 to see help with Amoxocillin... with her last strep infection.

My daughters symptoms were remarkably better on day 8 of amoxacyllin. She also responded to Zithromax. Right now we are on Augmentin and probitoics indefinitely while we wait for blood work. I have a feeling my daughter reacts to more than just strep. And we will be heading to an ENT to get her sinuses scoped... My thoughts is that if your DR. is a PANDAS Dr. Then you are in good hands. The doc we see in Houston consults with one of the big ones so that is nice.... If you have any concerns this board can help and let you know if you should seek treatment elsewhere. Everyone is incredibly knowledgeable...

Yes I thought about that too.... I will keep an active eye on it and hopefully it is just a coincidence... This morning she has been perfect and in a fantastic mood...

Thanks Ladies!!! I do have a log I have started and it has been very helpful. I will add this on and see. Last night we mixed it in cranberry juice and you could really smell it and before in orange juice... Back in OJ this morning and the smell and problem was gone, thankfully. She had never per say had that type of episode last night... But we were on Disney on Ice and got home late after a busy day... Finger crossed it was a coincidence.