cara615

This is such a HOPEFUL thread and we need to see threads like this. it keeps us going!! Positivity is so powerful. Thank you for this!!

Dedee, Thank you for the information. Based on our NutraEval test we know tha the has poor methylation. i don't know if he is an overmethylator or an undermethylator. We did not do any genetic testing. i would like to but have not initiated the process. Its 23andme still doing it? So based on our holistic MD's advice we were giving all those supps. They really worked too! i got him almost tic free from May to Aug. Right now we are recovering from his latest episode in Nov. His latest episode was not as severe as the one in May (before we even knew it was PANDAS). We did not treat with abx in May. We just started with abx this past Nov. So I really don't know. i have tried GABA before but for different reasons, to stimulate his pituitary to release HgH. it worked too!! What does GABA do in relation to what you suggested?

Went up to school to have lunch with my boys (I have twins - one PANDAS, the other not) and PANDAS son seemed fine. I talked to his teacher and she said his tics have been minimal or non existent for the past 2 days. Whew. He has been kind of clingy, giving very tight hugs but other than that and some teeth grinding, I did not notice any tics at lunch. I guess we will see what the afternoon brings. maybe the flare is petering out? i still have blood tests and culture scheduled for Friday. fingers crossed we are on the backend of whatever this is. If I can get through this flare with out it becoming debilitating then I will be more prepared and less anxious about the next one.

One more thing. today my son had an itchy rash on his back. Did not look like eczema. Did not look like scarlet fever either. Could it still be from strep?

i read on ther other post that these flares tend to last only 8 days. Hmmmm. I am wondering if my son got strep again - even while on azithro! He has an itchy rash on his back. That is his only symptoms other than his increase in tics. I am taking him for a blood draw for ASO and Anti dNase-B titres and I will do a swab while i am there. I am thinking we need to go back on keflex possibly to kill the strep (if it is strep and not just a typical flare). Ugh this is all so hard to naviagate and do we even know why our kids are getting PANDAS? Are there any clues yet to the source of this crazy disorder that is killing my soul?

Tell me more about these little flairs while on abx. What are they like? how severe can they get? Will it be anything like it was while not on abx? how long does it usually last? Today he is the same as he has been for the past 5 days. Same little vocal tics. No increase in intensity but the frequency is still pretty contstant. Has not increased though. Just want to know what to expect. Praying it doesn't go back to severe....

We are testing titres this week. Just need to get the orders for the blood test. While I am there, i will have hi throat swabbed. You never know. Especially if his tics continue to increase. Praying we are at some sort of plateau.

Thanks ladies for the words of support. You have no idea how much they helped! Sometimes I feel like I am navigating this ship without a compass. I don't even know if the doctors full understand what the reasons are for increased symptoms. Today his tics are the same as yesterday. Not increasing from what i can tell. Just stable at this "new" level. Hoping and praying it doesn't get any worse. I can deal if i know we will go back to baseline eventually. Thanks again! xo

http://www.m.webmd.com/heart-disease/news/20120516/z-pak-heart-attack?page=1 Read this. Puts it into more perspective.

We are on day 50 of abx. 10 days of Amox, 10 days of keflex and 30 days of azithro. I have an continued rx for azithro until May. After the pos strep culture and pos titres, my son started improving steadily with his tics getting less intense and less frequent. it was a slow progression but it was without question improvement, marked improvement. He got to the point where i would say he was almost tic free. Maybe I just couldn't see or hear his tics but whatever the case, my anxiety was way down and we were back to "normal". Over the past week I am noticing the frequency of his tics picking up. Not the intensity. So they are still pretty quiet, little murmurs or tongue rolls that you really need to pay attention to in order to notice but they are getting more frequent. And they ARE DRIVING ME COMPLETELY INSANE!!!! I CAN"T LISTEN TO IT ANYMORE. I AM GOING TO LOSE MY MIND!!!!!!!!!!!!!! ok, that felt a little better. i know I should be SO HAPPY that he has stopped SCREAMING on the top of his lungs 80 times a minute. i know this, I really do. But WHY are his tics picking up slightly? Why are we going in the wrong direction? What could be the reasons? Do I stay on the azithro? do I need another abx? is it yeast? is he missing something in his diet? We are GFCF, corn free, we do probiotics,glutamine, NAC, GSE (for yeast), methylated B's in a multi vit, cook with coconut oil, turmeric, etc. What else am I missing? Will I ever get him back to baseline? sorry for my rant. its been a very hard day. with all the cold weather school is out today and tomorrow and I work from home and blah blah blah.

So it been almost 50 days since I put my son on abx. He did 10 days of amoxicillan, 10 days of keflex and now almost done with 30 days of azithro. We have seen his tics go from a 10 down to a 1 or a 0.5. It took a long time and it was a slow process but we got there. He still tics from time to time but they are so infreqent that I can't even consider them tics at this point. No other behaviors either. He was dx with STREP, had a post throat culture in Nov and elevated titres once we took a follow up blood test. I got a PANDAS doc to give us a prescription for Azithro until May 2014! Right now he is taking a treatment dose until we feel ready to put him on a prophylactic dose. My question: How much probiotic should i be giving him? We do Ther Biotic Detox (50 Bill CFU). Also, how much anti fungal? We do 8 drops of GSE per day. In addition, we do 1200mgs of NAC with molybdenum, 1750mgs of Glutamine and a muti vitamin including methyl B complex. I cook with lots of turmeric and coconut oil. We are GFCF and corn free as well as low sugar. What else should I be doing? Our PANDAS doc did not suggest any herbs or other supps. Am I doing enough? Thanks for any input! Cara

Prayers are powerful and this is great. I will write all these names down and pray nightly. Please add cara615 and son Thank you!

There is another PANDAS conference in February in Atlanta. Trifiletti will be there among others. I am looking forward to meeting lots of parents and researchers! http://www.atlantapandaspans.org/

Thanks ladies. So is my son 100%? No, and will he ever be? Who knows. I am just taking it day by day and hoping to never experience another flair. But only time will tell. Who is going to the Feb conference in Atlanta? I will be there with another PANDAS mom from our school. I hope to be able to meet some of you!

We saw Dr. Fier's assoc on Saturday. She agreed with everything that I suggested to her and has written a script for my on to stay on azithro until schools out. We just need to monitor, yeast, good bacteria and liver function (which we are doing). My son is doing great. Tics are slowly but surely resolving. However, this past week in school he had a 20 min episode of motor tics (sucking in his cheeks like a fish and turning his head to the left every 5 seconds) and the teacher was worried. Then she received a call that a girl in the class had strep and was taken out of school. When I got my son home, he was fine. Crazy right? Exposure to strep will get him ticcing. Unbelievable.

AMEN! Its the Yin and the Yang! How can one truly know the highs of Joy without having known the depths of depair. It gives perspective and creates a sense of gratitude. Gratitude builds character and empathy. I 100% agree with you and am choosing to see our struggle with PANDAS in this very same light. I am choosing to pay it forward. I have learned so much from reading on this forum and in the past week I have helped potentially three families seek the guidance of PANDAS friendly doctors for suspected cases. Please know that when my son had (what we now know to be) his 1st flair, I lost 15lbs, started smoking cigarettes and got myself on zoloft. I was depressed, anxiety ridden and had fleeting thoughts of suicide. I know that seems very dramatic but when you have a normal healthy son one minute and the next he is taken from you, its similar to a kidnapping. I was distraught and knew I had to get my act together or none of us would survive this. I stopped the cigarettes and am weaning off the zoloft. I started juicing and running again. I know my journey with PANDAS has just begun but I feel a little sense of control. Maybe I am just kidding myself but if I can help my son, then I can help so many others like him. I plan to collaborate on on a book with a Mom of a son with TS. She has healed him naturally and I think the 2 perspectives will fit together nicely in a book about Tics and other neuropsyciatric symptoms (i.e. ADHD and OCD). For us two, the tics were the biggest symptom. Bit circling back, this post is great and frankly with out seeing the positive side to this whole mess, how can anyone expect to survive?

What is HHV6 and what types of antibiotcs to they give to treat it? BTW - we got the blood tests back and ASO was positive (no number given) and anti dNase-B was over 700 (normal under 200). So doctor is convinced its PANDAS however she is holistic and does not like long term abx useage. That is why we are going to another doctor. Holistic dr recommended CBT instead of long term abx! I laughed at her because my son's major issue is really just the tics. And at age 5-6 CBT will do a whole lot of NOTHING for him. Ugh.

qannie47 - yes $450/hr doc has gotten the boot. Didn't even fill out the paperwork! I feel good about the $250/hr one because he is considered a leading PANDAS physician by PANDAS network. He is a psychaitrist and was at the conference in RI this past fall. As for IVIG, not off the table at all. I am absolutely considering it. I just need to learn more about it and understand what our expenses will be. I do want to learn more about my son first too (i.e. coinfections, immune disorder, etc). Once I have all the cards on the table, we will consider ALL treatments for sure. I just have to say that this forum is truly an amazing place. You ladies and men are all SO knowledgeable, moreso than most docs. And I know you have to be! When you are an advocate for your child, you jusr have to be.

mdmom - great advice. We found a leading PANDAS specialist in my area Dr. Fier that is only $250/hr! I will ask him to expore co-infections and immune function. our holistic MD (based on extensive testing) suspects leaky gut, methylation dysfuntion and mito dysfunction. She thinks the mito dysfunction is caused by poor absorbtion of nutrients due to the leaky gut. My son has no symptoms of mito at all. We have treated the leaky gut, yeast and methylation with great success so far. This ofcourse was before we realized it could be PANDAS. So now we are just trying to figure out what the PANDAS triggers are. I have not really given IVIG a thought at this point. I was thinking more about keeping him on long term antibiotics and continuing to treat the yeast, leaky gut an methylation. Hoping that if we can keep the inflammation down that maybe one day his immune system will mature.

For us, changing diet was big. You should look up a candida diet because there are many things you should have her avoid. Sugar being #1. She needs to eliminate almost all sugar. As far as fruit is concerned, stick with berries. Ketchup and any vingegar based foods are bad. Apple cider vinegar, however, is good! Do you know if she has any food intolerances? Dairy can promote yeast growth and also is a big inflammatory in the gut. Yeast loves inflammation. Dairy should be avoided while killing yeast. We use grapefruit seed extract to keep yeast at bay. It needs ot be diluted but the great thing is that the yeast can not mutate to be come resistant to the GSE the way they can with the diflucan or Nystatin. We also use Ther-Biotic Detox (50bill CFU) made by Klair Labs. This specific blend has strains that fight candida specifically. Hope this helps!

LLM thank you for all that good info. I forgot to mention that he gets glutamine every day! So hopefully that is helping counteract the NAC. I am also cooking with a lot of turmeric lately on all his foods. I will make sure to do those liver panels and maybe in the summer see if I can take him off........

Your responses sound very promising. So far my son has had no adverse effects from the 3 different types of abx he has been on. He does complain of a belly ache after eating from time to time but its brief and then he is fine. His poops look great. i am in the camp right now of keeping him on the azith until summer. i just don't want to chance it. If he is doing well and remains free from strep then I think we are on to something. thanks for the advice to test for liver functions. I will make sure to do that. i have him on NAC 1200mgs a day to help with detoxing and take some of the burden off his liver. I hope that this helps. Thanks again for your replies!

So i am starting a new thread because we are moving into the next phase of recovery. My son has been on 22 days of abx and his tics have gone from severe to low/moderate. They are quieter and less frequent. Mostly vocals, the only motor is a head nod but its infrequent. We have 28 more days of azithro before we run out. My gut tells me to keep him on so I am going to get another rx before we run out. However, what are the real risks of long term abx? We give my son 50 bill CFU of Ther-biotic detox daily and we use about 7 drops of GSE a day to keep yeast at bay. We are on a clean diet and have removed all severe and moderate food intolerences and are low sugar. i also give him NAC to help detox. I really think it helps in combo with his methyl B complex that we give 2x a week. What do I need to watch out for with the abx? Can he realistically stay on them for a year?

We are on day 2 of azithro and his tics are lessining. i thought i would see a spike but no. he had some emotional lability and a little OCD over clothing but that is gone now. It was for a day. Praying we can find a doc that will work with us that doesn't cost us a fortune. the new one I called is $450 an hour and doesn't take insurance. WTH?

qannie47 is right. I guess what i am experiencing is waxing and waning as the abx take their effect. Each day its something new and then they disappear. New tics come and then they go. Overall we are MUCH less than at the peak 20 days ago. Today he has emotional lability and some OCD about his clothing. The lability is not new but the OCD is very new to us. He has never really been bothered by his clothing. Tonight we give him azith for the 1st time I am prepared for increased symptoms. Holding my breath.