Mommy2MCL

On Thursday we saw the PANDAS DR. and go the ball rolling in diagnosing what we are dealing with. Through our base story he prescribed Augmentin to our daughter. 2x 500MG with Florastor... We started her 1st dose on Thursday evening. Tonight we were out late and got home to take her dose and she melted down bc the florastor smelled... And she yelled at me the way she has never yelled before... My thought is maybe she was just overly tired from a busy day... or does it have something to do with starting Augmentin. Thoughts? Thank you, Megan

Good luck and keep us posted. If you find this dr. not to be knowledgeable in PANDAS or you aren't happy keep fighting... Or at least a blood test. My understanding of this is if he were to present again with another infection it could get worse and harder to recover from. Good luck with the Dr...

My daughter first presented with TICS. We saw the PANDAS specialist here and he put her on long term antibiotics. He wants to get her level to 0's. We haven't had blood work yet but our verbal history was enough that he saw the need to make sure we kept up using antibiotics. Our story starts in April and we have had two infections since. Each infection my daughter has presented with more severe symptoms. The tics were first just her eyes. When he examined her he said he saw 7-8 he would consider. We have also seen separation anxiety and emotional liability. The antibiotics are preventative to make sure the antibodies don't attack the area of her brain, the basal ganglia... If you can prevent the infection then you potentially prevent your childs symptoms increasing. I also have read or heard somewhere that the phycosocial medicines do not help as much with these PANDAS kids... Have you started the clonodine? Has it helped... Maybe research that...

Yes I think I am just so nervous... It's nice to read the stories and our flares seem to get worse each time. Hoping for the best Thursday. Thank you for sharing...

I mean as a parent before DRS and Blood tests... I guess I mean when you 1st started the journey? Our Journey started last April when I noticed that my daughter would roll her eyes involuntarily and she had rapid blinking. This started overnight and she had not shown this before. This has lasted in some form or another till her last 10 days on Amoxycillian for Strep. I haven't seen her roll her eyes or dilate her pupils in 2 days. She also developed a motor tic of humming. Very low sounding and that has decreased a ton but I will say she still has it. We also had a short period in Sept when when she had decreases the tics a ton after 4 weeks on Zithromax for a Sinus Infection. Other symptoms that have reared their ugly head just recently are emotional Liability and Separation Anxiety. Lots of worried thoughts. And another bout of strep 2 weeks ago. SO we are seeing more symptoms with each infection... I guess I sometimes can't wrap my head around this. I mean at birth she was born with a CHD and now the possibility of this! I think we will go to VEGAS when she turns 21... We do go Thursday to a PANDAS specialist... I know he will order bloodwork and we have a ton of paperwork to go over. They told me to expect 2-4 hours. Keep us in your thoughts and prayers...

I don't want to play dr but I am scared of what the next flare could brings. So far she seems to be a mild case. Main symptoms -Tics -Separation Anxiety -Emotional Liabilty. -Dilating pupils -Increased general anxiety.

I posted last week with my daughters symptoms last week and many of you suggested that this is an option we should explore. I have an appointment this coming Thursday with the only PANDAS dr in Houston we could find. The question is that she was put on Amoxycillian last Thursday for Strep (ironic?) Her 10 days should be up SUnday. But there should be a few doses left. The pharmacy mentioned that we would have left over... So my question is should I continue to give it to her? The nurse at the dr said they would want to do bloodwork but it would be done at a separate lab... When they do bloodwork do they want you off of a certain amount of medicine? TIA!!! Megan

Glad you got some answers! I am not helpful with knowing what tests but at least you have a starting place.

Hugs Momma!!! My daughter started with the sudden onset of eye rolling... We were told for 6 months it was allergies.. Took her to a mainstream neurologist and he said Tourrettes... Nothing else. Medicate, botox, or nothing. One night I started researching PANDAS and she has many of the signs that point too it. We are still in the process of getting in with a PANDAS dr. But I would 2nd what these ladies say. They are a wealth of knowledge and incredibly helpful...

We are new here and in Texas too... We haven't seen a dr. but are pursuing getting an appointment with Dr. Dr. I don't think my daughter presents very highly with OCD too. She did have the tics but what we have seen is the total meltdowns. Which I believe refer to emotional liability (that may be the wrong term) She is normally very well adjusted but several times since all of this started in April she would break down in an uncontrollable fit that would last around an hour. So while OCD is a big one there are others that could point to PANDAS too.

When my DD started we were also told allergies. For the longest time we thought that because she had an ear infection and seemed to be congested too... In July I called our Pedi and he prescribed Azelastine... Still thinking it was allergies. The azelastine did not stop the eyes but slowed them down and you could tell they helped. Another reason we kept up with the thought it was mainly On my original post a mom posted why we may have seen relief from an antihistamine. Let me find it... From Qannie47 I have come to have a very high respect for what Strep can do....You posted pos Strep + concurrent Sinus infections. I have learned that Sinus infections are also Strep. So there is your history. It also appears that the Azalstine provides a fair amount of relief for your dd. If you look at some recent posts, you will find that some are finding relief from meds that contain antihistamines...I agree that you should pursue a possible Pandas connection. If you decided it is not applicable, you can rule it out. On the other hand, if caught early, you can save yourself a lot of time and aggravation running to 12 different doctors. The upside also is that it appears that with Pandas, the earlier it is caught and treated, the better. Good Luck!

Thanks again ladies... So here is some more interesting background... DD had an emotional outburst Tuesday. Cried for over and hour... Guess what Strep... I talked to her Pedi Told him my thoughts and how she fit the symptoms. He was very neutral and pretty much said that he didn't know enough about it. So at least he didn't kick me out. I am going to get an appointment with a Dr. that has been recommended by several sites. He seems to be a new doctor in Houston that is helpful. From being sick her tics have returned. Mainly rapid blinks, minimal eye moving and a low hum... Each night I prayed for the strength and a sign to know what to do best with the diagnosis of TS. My research of diets and things led me here an I can't help that a strep infection this close to a diagnosis and my main research is not pointing me in the direction that I have to follow through. I may have a ton of questions so I look forward to getting to know many of you.

I didn't get it..

I am by no means an expert but my daughter started overnight with the involuntary eye movement. Her's mainly moves to the left and I can in now way do my eyes the same. As I have researched and researched it seems many cases start out with the eye roll. I am interested in finding out too.

I am in the process of trying to set up talking with him. I sent you a message...

Thanks everyone! What blood work should we ask for? Looks like we are heading to our regular doctor tomorrow. She has had a fever for the past 3 days... If they are going to take blood might as well see if we can get a number. I really appreciate all of your help Megan

The only auto immune disease I know of is juvenile diabetes which my brother has.. We also have no history of TS Possibly extremely mild OCD but undiagnosed and not life altering... Any PANDAS dr. in the Houston area that come reccommened

We were recently diagnosed with TS due to simple motor and vocal tics. Eye rolling, head roll, sniffing, clearing throat and a hum sound. We saw the top neurologist in Houston that deals with this. But the more I read about PANDAS I wonder. I was hoping y'all could give me some feed back. Here is our medical history with this... -Feb 2012- Noticed her eyes would roll back. Lasted 3 days. Called Pediatrician said it probably was allergies. Went away. Feburary 2013 Diagnosed with Strep at Walgreens Clinic. Not sure what strand but it was a throat swab. She never really had strep before but my younger 2 boys have. -April 2013 Went to a birthday party where there was a miniature horse… Noticed rapid blinking and rolling eyes back in head. Not a seizure bc she was completely in the moment. -Took to pediatrician and he said allergies. Suggested moisturizing eye drops. -Lucked out and got her into Dr. Eric Miller and he agreed with the allergies. Strucure of the eye was perfect and 20/20 vision -June 2013- Ear Infection. Has other symptoms that equate to allergies. Sniffing, clearing throat ect… So we wait it out. Started on Zyrtec and Flonase July 2013-Symptoms continue and I call Pediatrician again Prescribed Azalistine. Finally saw some relief. Eye rolling and blinking went from frequent to everyone in a while. August 3- Started coughing, runny nose ect. Eyes went crazy. Friday she threw up. Didn’t know if it was mucous or a stomach virus. Took her to dr & She had a sinus infection. And a Stomach virus. After she had thrown up her eyes were the most stable they had been since April. First Antibiotic did not work. She showed no improvement Took her back to dr and she was prescribed Zithromax, this was the Friday before school started. August 13- Took to Allergist. Tested for allergies but she only reacted to a slight mold mix. Also gave us Bepreve Eye drops. She was still sick from the sinus infection so he prescribed her a steroid to see if it could shock her system to stop… Sept 3- was follow up with allergy dr. Still had eye rolling not horrible. Still had sinus infection. Prescribe Zithromax again. Said we didn’t need to see him. Didn’t know what was causing it but didn’t’ think allergies. After 2 complete courses of Zithromax her eyes stopped for several days. Sept 18th-Took her to ENT. This was during her most symptom free time. Thought I was crazy just a behavioral tic… Said to take her off of Zyrtec, Flonase, and Azalistine. -After about 5 days her eyes had started up again and the blinking. Went ahead and restarted Azalstine. Eyes calmed back down and we have been on that since Sunday. Sat and Sunday her eyes ticked more but she also complained about them being very dry and we tried the Bepreve again. Sunday we stopped Azelstine and her eyes have increased in blinking and rolling. She has increased Sneezing and clearing throat. Other points -85% of time she was sniffing or clearing throat she had mucous or actual stuff she was moving around. -She worries all the time…. Sometimes it hinders her from falling asleep. 3 week of school she had a meltdown. Also right before her 1st math quiz. Everyone says 2nd grade is an adjustment Dad left for San Diego for 3 days for work and she cried and cried. Inconsolable.. Did that one more time when he wanted to go watch football. He is in Oklahoma now and no problem… During her meltdown she had minimal tics and eye rolling Dances on competitive dance team Only OCD tendency is mild and she must take a bath at night. She has had several emotional outbursts of crying and its very hard to calm her down. Right now she is running a temp and seems to have a virus. Dr. believes it is Viral. 2-3 days of fever and 5-7 of sore throat. Tics are bare minimum Thoughts? The Neurologist diagnosed with Mild TS. We started her on Magnesium but are waiting it out because so far it is not affecting her. Her eyes are very sensative. Any type of smoke or airborne irritant will increase blinking but eye drops help on that account. Thank you.