3boysmom

Did you get the phone consult? Was he able to help? Thinking about calling and asking for Dr. T to consult with the doctior we are currently seeing. We are doing school on-line so this helps with his stress in front of peers. The tics are a new issue and heartbreaking....we also deal with 2 other sons....hang in there....I totally get it!

Just wondring that myself.....on the main page of this forum, at the top, there is a scrolling advertisement for Tamiflu and lists "strange behaviors as a possible rare side affect...

Was busy typing my own tic concerns...I missed yours....strangly similar!!!!! any advice? Has anything changed?

Well yesterday was the 3 year mark of this illness and I was hoping to post a great update, but instead I am asking for help with something new. Our DS12 (13 in a few days....happened right before his 10th birthday) was doing great and took a big nose dive this summer, was found to have a very bad case of Candida Glabrada, h-palori(spelling?), and a few other coinfections. A great doctor (believes in PANDAS and treats all kinds of "out-side-of-the-box" things, but is not a PANDAS per-say doctor) has been helping us this summer because we have already gone the 8 IVIG route and Dr. B is great but difficult to have time for him to look for all these other things, We are in Texas. Anyway, with each clearing of an infection, he has gotten better and better. Was off of antibiotics for about 2 months while the yeast was being treated...... November 12th brother gets the flu and all are put on Tamiflu. Passes quickly and then on November 15th DS12 says that something is not right-doesnt feel sick but has 102 fever, lasts for 1 day. Tests negative for flu and strep....mystery... Then a few days after the mystery 1 day illness and he has this terrible tic (tics have never really been our problem (mostly dibilitating OCD has been our battle) NOW: He can NOT speak a complete sentence without a loud suck-in noise (like a reverse hic-up) or he will sniff non stop in between every word. Doctor put him on zithro 250 (until the yeast he had been on Augmentin XR 1000 for 2 and a half years) Zithro did nothing and we added Fluconazole which still made no inprovements. Stopped the zithro and the Fluconazole and went back to try to see if it was yeast by putting him on Nystatin and Ketaconazole.....grasping at straws because this worked before when we had a few tics before treating for yeast. This doctor that is trying so hard to help is not sure what to do next, and we do not know what that fever was from, wants us to take him to a neurologist for an EEG and then would like to try something called "Lamictal" Before we do that he would like us to try "Cefadroxil" Feeling lost with no PANDAS guidance.... Why the tics after 3 years? SO Suddenly! (what are we missing? What should we test for?) Should we have pushed for a higher dose of Zithro maybe 500 x1 instead of the 250 x1 (he weighs 130)? Should we try Cefadroxil? Should we go back and try Augmentin XR 1000? Should we go to get the EEG? Should we try Lamictal? (adverse reactions anyone? is it a SSRI drug?) Anyone deal with this tic before and what helped....will it just disappear one day as quickly as it arrived? Is there an untreated infection in him? The other 2 boys were also switched from Augmentin to zithro a few weeks ago because the strep titers went up for the first time in 2.5 years and one had micoplasm numbers in the 3000s...BUT- KNOCK_ON WOOD...they are doing fantastic and showing absolutly no more signs of PANDAS issues (remember the younger 2 were caught and treated very early because we knew what was going on. The DS12 is a different story because we went down the wrong path for too long and I believe this is why he is so difficult to "fix". I know I have read MANY times about those who deal with tics, but I read with different needs in the past, looking for OCD help. Now I am back with a different need for help. Thanks in advance to my long time ACN brain stormers....Linda

Not sure how many Old threads that you have read through, but PANDAS kids can be "canaries in a coal mine" with strep. Meaning they can detect and flare with strep in others around them. I know, I know, sounds crazy but it is common! Like someone with a severe peanut allergy can detect and react to peanuts In the enviornment without even eating any peanut items.

Just a thought...have yuo checked for yeast? We were in a good spot and things took a turn for the worst, the old antibiotics that used to do the trick no longer helped....discovered yeast (candida globrada) treating the yeast did the trick to turn things back around...we'll see.... Linda

Remember that it usually will take months of antibiotics and not just 10 days. This is when you may run into problems. You have your 10 days because your dd tested positive, after that then doctors think since the infection is gone then you don't need more antibiotics ( they don't understand ). Not trying to be negative, just preparing you for the possability. Also, please remember to give probiotics with the antibiotics to help avoid yeast issues... Very important! You are so blessed to have been informed about this illness early, your chances for a full and quick recovery are SO much better than to waste years with all kinds of wrong diagnosises!!!!! Happy Thanksgiving, Linda

I bet Dr. B. Would say no. We were told " no vacinations". The goal is to reset or calm the immune system. I would check with your PANDAS doctor.

Totally agree!!!!!! DS just got the flu, quickly got Tamaflu, and it passed pretty quickly with minimum set back of PANDAS symptoms! My friend got the live flu mist for her daughter and within weeks her daughter got the alipesia ( spelling?....hair falling out) autoimmune illness. No moe vacinations for any of our 3 PANDAS sons!

Ok, I'll follow this trend and post our 3 year update (Dec. 11) it is also a good one.... Hope it won't jinx things.... Be back soon...... Linda

bump ???????????

Philamom- there is a code number 3968 and then the doctor typed: (yeast / fungal culture, stool) You go to Quest and give them the orders and then they give you a kit and you take it home, follow the directions (yuk) and bring it back to Quest. Helpful hint...lift up the toilet ring seat and place siran wrap across the bowl (hanging almost to the water) put the ring seat down and have your child go #2 on top of the wrap....make sure you have on gloves and then you can follow the directions in the kit. Good luck, Linda I just noticed another code in the corner, so not sure what it means but just in case: 112.85

I'll see if I can find the name of the test when I get home. We use culturelle but this doctor has had us add Theralac ( in the cooler at Vitamin Shoppe stores.)

Dr b had us try fluconazol (spelling) & said that there wasn't really a reliable test for yeast. When Hunter did not improve, we all figured he must not have yeast. This summer we found a doctor that said that we should have him take a yeast stool test because he felt it could be yeast (said that the reason they say a yeast test is not reliable because if it comes back negative, then it could still be yeast, but a positive is a true positive). Well, the lab personally called the doctor because Hunter"s labs came back with toxic levels of yeast (Candida Glabrada) the lab tested the sample againt many antibiotics and it did not respond to fluconazole! He put Hunter on Ketaconazole and then added Nysatin. ( not sure about either spelling...1:00 am here). Just giving you this FYI as you never know when someone elses break through just may be the ticket for you as well! Let me know how it goes! Linda. ( Quest labs does the stool test)

We found much improvement when we discovered and began to treat yeast! Good luck, Linda

You can start with simple ASO & AntiD-Nase strep titer tests. Your pediatrician may be willing to run then.

That article makes me want to respond, but can't waist my energy with them! Ugh

What's the latest news? When is the court date?

Don't buy the kit, it should just be free helpful advice and Amy is right, you'll need the money for medical help. First advice... Keep a daily journal... Start today. Journal behaviors, meds, phone cosultations. You think you will remember , but you won't and it will help you see progress. You can do this, one day at a time. Linda

If he has been on many antibiotics, then he could have created a yeast overgrowth and this too will cause behavioral issues. Please make sure he takes probiotics with his antibiotics, you can read more posts on that or others cn chime in on that advice. Love your name "mother bear" because that will be what it takes to get him well. He will get well, but dont let doctors convince you that you are a nut...stand strong and follow your gut! Parents on here are smart and helpful, so ask away! My family will be praying for you as we do for all the children affected by this cruel illness.

Just posted on BCH fb page: Your BCH statement on PANS/PANDAS should say "we incorrectly treat PANS/PANDAS!" I am the mother of 3 PANDAS sons. Over night dramatic change in the first child rocked our world but the true nightmare began when we tried to find treatment! If he would have been treated immeadiatly with antibiotics and not psyc meds, then he would not have gone on to get Sydenham"s chorea. Due to the wasted time by doctors that suggested psyc hospitals and psyc meds, he went incorrectly treated for way too long! When we finally recieved the correct PANS diagnosis and antibiotics, that is when he finally began to improve. Because we knew what was hppening with the other 2 sons, they were put on antibiotics immeadiatly and recovered very quickly. Early CORRECT TREATMENT is KEY. Due to the wasted time by doctors which were more eager to give a 9 year old boy dangerous phyc drugs before looking for an infection, three years later we still are dealing with lasting issues from late treatment! I will say that the PANDAS specialists saved his life, our son has been mentally returned to us...please release Elizabeth into the care of her parents and those PANDAS doctors which are eagerly waiting to help her. Every day you are keeping her from correct treatment is a day that you could be causing more damage. This could have been us! Thank God it was not as this illness is devastating enough as it is. We are all watching, please right your wrong!

This makes me want to get on a plane and protest those dumb %*@!.... With picket signs!!