MaryAW

@Swetha Can you get a Lyme test done? In the US, Igenex is the best. Maybe you could get a US doctor to do telehealth with you? I have no idea if they would, but worth a try! You can try Epsom salt baths for relief, but be careful because it can cause loose stools. Also for tics, magnesium glycinate worked really well for my daughter - she used Metabolic Maintenance 125 mg and did not cause loose stools for her. You can try a small dose of magnesium glycinate before bed - maybe open the capsule and pour out half, so you give half dose. Always start with a small dose and go higher to avoid a flare (not every supplement helps with every child). Always try one change/addition at a time so you know what is working. Wait 5 - 7 days before adding something new or 3-5 days before increasing a dose. If something causes a flare wait for it to settle down before trying something new. Keep notes of what you're adding and if it works or not. Also be aware of triggers for your child. My daughter was triggered by mold, so we had to avoid moldy places. We learned where they were because she flared so badly. Some people have mast cell activation syndrome. Zyrtec and Pepcid work for that as they are histamine blockers. You can try them and see if they help. Some natural mast cell stabilizers include Neuroprotek (quercetin and other flavanoids) or DHist Jr., perilla seed extract. Vitamin D3 is hugely important, but you should have the levels checked and monitored. NAC works for a lot of people, but my daughter did not tolerate that and did better with glutathione. We use Body Bio liposomal glutathione. Thorne is very good too. She also did well with B12 - CVS brand chewables are actually really effective, also Designs for Health and Perque are all VG - and they taste good too! My daughter had trouble with sleep, so melatonin worked for her. She used 1 mg when she was younger and takes 3 mg now. There are a lot of quality brands out there. We have used Thorne, Designs for Health, Metabolic Maintenance, Pure Encapsulations, Nordic Naturals, and many more. If you can't get a doctor to prescribe antibiotics, you might try herbal antimicrobials. I would recommend reading the books by Dr. Crista and Dr. O'Hara for their recommendations on this. Try to get your child to eat healthy! Good sleep and good exercise!

I do see slurred speech and "air hunger" both as symptoms of PANS/PANDAS, but it sounds like air hunger is mainly caused by Babesia (which would trigger PANS).Can you test for Babesia? Air hunger: https://aspire.care/personal-stories/long-slow-road-to-pans-pandas-recovery/ https://www.betterhealthguy.com/episode174

Try using the search box in the upper right corner of this page and search on slurred speech, then search on posture, then breathing difficulties. Make sure to search "This forum" or "everywhere." A lot pops up. Have you tried ibuprofen to help with inflammation? Usually that helps a lot with PANS/PANDAS. If it is strep, try to stay on azithromycin or Augmentin as long as possible! Send your doctor to the The PANDAS Physicians Network: https://www.pandasppn.org/

DO NOT WAIT for the dam to break! My daughter was similar to yours about 7 months prior to the full-on PANS. Other symptoms she had before the full onset were: frequent urination, decline in schoolwork, taking longer to do tasks and handwriting changes. This was 2011 and there was very little awareness, so we struggled. We thought it was PANDAS but didn't know where to go or what to do. You need to find a doctor who understands this ASAP. You may have to pay out of pocket, but time is of the essence. If it is just caused by strep, she needs to be on long term antibiotics. There may even be an herb you can try. Definitely try giving ibuprofen to reduce inflammation in the basal ganglia. For doctors who treat PANS/PANDAS go to Pandas Physicians Network: pandasppn.org It has a list of doctors sorted by state: https://www.pandasppn.org/practitioners/ I highly recommend you get the amazing book - What to Do When Your Brain Gets Stuck: A Kid's Guide to Overcoming OCD (on Amazon). It will help both you and your daughter with OCD. There are three great books to learn about PANS/PANDAS on Amazon by Jill Crista, Dr. Scott Antoine and Dr. Nancy O'Hara - all doctors whose children had PANS/PANDAS. They discuss testing and treatment. Make sure to check for mold (RealTime urine test), Lyme and other coinfections (Igenex) and especially bartonella (Galaxy Diagnostics for this coinfection). Also check IGg levels to be sure she can fight whatever she's fighting.

@Swetha Magnesium glycinate (we use Metabolic Maintenance) is also very good for tics. Take before bed to help with sleep. Regarding B12, a blood test only shows circulating B12, not intracellular - which is what matters. Our doctor says excess B12 is "peed out." My daughter called B12 her magic pill! I would not back down on that!! @Sandy50 Frequent urination was an early sign for our daughter. A lot of PANS doctors feel there is an underlying illness causing the PANS. Obviously for PANDAS, it's strep. Make sure to check for mold (RealTime urine test), Lyme and other coinfections (Igenex) and especially bartonella (Galaxy Diagnostics for this coinfection). Also check IGg levels to be sure he can fight whatever he has. There is a lot more info out there now, so read up! Three great books: Demystifying PANS/PANDAS by Dr. O'Hara, What to Do When Your Brain Gets Stuck: A Kid's Guide to Overcoming OCD, TOXIC by Dr. Nathan. All on Amazon. Two great websites: Aspire.care and Pandas Physicians Network: pandasppn.org

Designs for Health oregano oil caps are amazing! Tough on the gut - so take with a good meal.

Mold and chemicals can cause flares, also certain foods. Try keeping a diary of where you go and what she eats to help figure out her triggers. My daughter was mold - big time! Try giving liposomal glutathione during a flare. Also, an epsom salt bath. Vitamin B12.

Yes, get the RealTime mycotoxin test for mold. Also try giving liposomal glutathione prior to the test. My daughter had all zeros on her first test because she could not detox the mold at all. After the glutathione the numbers went way up! Make sure to check for Lyme and other coinfections (Igenex) and especially bartonella (Galaxy Diagnostics for this coinfection). Also check IGg levels to be sure she can fight whatever she has. There is a lot more info out there now, so read up! Three great books: Demystifying PANS/PANDAS by Dr. O'Hara, What to Do When Your Brain Gets Stuck: A Kid's Guide to Overcoming OCD, TOXIC by Dr. Nathan. All on Amazon. Two great websites: Aspire.care and Pandas Physicians Network: pandasppn.org

Dr. O'Hara and Dr. Wells in Wilton, CT are both excellent! You'll need an initial in-person visit, then you can do telehealth to check in.

I know you posted a while ago. Did you find a doctor? Sounds like very bad OCD. Try ibuprofen, if you haven't. We used a lot of that during the early days! Go to Pandas Physicians Network: pandasppn.org it has a list of doctors sorted by state: https://www.pandasppn.org/practitioners/ A lot of PANS doctors feel there is an underlying illness causing the PANS. Obviously for PANDAS, it's strep. Make sure to check for mold (RealTime urine test), Lyme and other coinfections (Igenex) and especially bartonella (Galaxy Diagnostics for this coinfection). Also check IGg levels to be sure he can fight whatever he's fighting. Three great books: Demystifying PANS/PANDAS by Dr. O'Hara, What to Do When Your Brain Gets Stuck: A Kid's Guide to Overcoming OCD, TOXIC by Dr. Nathan. All on Amazon.

Dr. O'Hara who wrote an excellent book on PANS/PANDAS recommends Doxycycline & Rifampin for Ehrlichia. For most of these tick borne illnesses multiple antibiotics and/or herbals are needed. Most doctors do use doxy for ehrlichia.

My daughter had constipation prior to her PANS (back in 2007!). For some people, probiotics can make constipation worse, but they are needed for the gut health! Check with your doctor first, but you can try adding magnesium glycinate before bed (helps you sleep too). We use Metabolic Maintenance. Start with one 125 mg capsule and you can go up to two if needed. You can also add one capsule in the AM if needed. If he's not a pill taker, try an epsom salt bath. Also a jar of pears baby food or an apple or banana help a lot! A lot of PANS doctors feel there is an underlying illness causing the PANS. Obviously for PANDAS, it's strep. Make sure to check for mold (RealTime urine test), Lyme and other coinfections (Igenex) and especially bartonella (Galaxy Diagnostics for this coinfection). Ask about candida too. If your son has symptoms of candida, he might need an OAT test to confirm. Also check IGg levels to be sure he can fight whatever he's fighting. For a bad flare try ibuprofen. We used a lot of that during the early days! Eventually the azith will modulate the immune system and should calm things down. It worked for us. There is a lot more info out there now, so read up! Three great books: Demystifying PANS/PANDAS by Dr. O'Hara, What to Do When Your Brain Gets Stuck: A Kid's Guide to Overcoming OCD, TOXIC by Dr. Nathan. All on Amazon. Two great websites: Aspire.care and Pandas Physicians Network: pandasppn.org

Other great resources to learn about PANS/PANDAS are: https://www.pandasppn.org/treatment/ and https://aspire.care/ Aspire has some great videos. I recommend this one: Lecturer: Nancy O’Hara, MD, MPH, FAAP Webinar: Demystifying PANS/PANDAS: A Functional Medicine Guide on Basal Ganglia Encephalitis Also, make sure she is not, or has not been, exposed to mold. This has been the major problem for our daughter. I think the general understanding on antibiotics is very long term. Our daughter was on for 5 years (Azithromycin), we went to every 3 days after she started doing well. We stopped because she had no more symptoms, that lasted about 3 years, but things came back pretty badly this year after mold exposure and her Covid booster. We are starting herbal antimicrobials this time around (oil of oregano, grapefruit seed extract, berberine). If they don't work, we'll go back to Azith. Check vitamin D and B12 levels too.

I just got the Could it be B!2? By Sally Pochalak - very interesting, and I definitely think it is part of my DD's issues right now. What form of B12 are you using? Are you doing IV or injections, or just supplements. Our ND gave us hydroxocobalamin, but we had been using methylcobalamin. She is also doing IV Myer's cocktail. BTW - she had to get the booster for work, mandatory! Awful.

Two good books about mold detox are: Break The Mold: 5 Tools to Conquer Mold and Take Back Your Health by Dr. Jill Crista and Toxic by Dr. Neil Nathan. Both are on Amazon and have the protocols pretty well laid out in the book. Dr. Crista is holistic, while Dr. Nathan is integrative. We are just starting mold detox for our daughter now. Be sure to also read the MCAS chapter in Dr. Nathan's book.

@Atex "Just another few data point for you all, my 8yr old experienced a sudden flare in her TS tics within about 8 hours of the pfizer covid vaccine #1 in November 2021 which lasted a few weeks." How long did your daughter's flare last? We are in our 4th week here. Did anything (supplements, meds) help calm her down? Any help is appreciated.

My 18 y.o. daughter was slightly flaring from mold exposure and then had to get the Covid booster. She is flaring VERY badly now. It started about 2 days after she received the booster. It has been almost 3 weeks now. We are pretty sure it is mast cell activation and are treating her with H1 and H2 blockers (Xyzal and Pepcid) and D-HIST Jr. Also, Histamine Block before meals. She is VERY slowly improving. Good info about MCAS: https://hoffmancentre.com/12-tips-living-mast-cell-activation-syndrome/ and from the same site: https://hoffmancentre.com/treatments/mcas/ She did pretty well after the first two shots, just a mild flare for a few days. I'm thinking things were bad this time because she had recently been exposed to mold, so her system was ramped up already. We are all tripled vaxxed in our house, but I disagree with forcing people to get the shot to attend school, work, etc. People don't understand what PANS/PANDAS and MCAS people go through.

My daughter flares from mold. This is the only thing left that triggers her PANS symptoms. For her it is her best friend's basement and the room at choir. Also, during allergy season when mold spores are high. She was ticcing badly last August from the outdoor mold spores and we went on a trip to the California coast. Her tic immediately stopped out there, and then it started back up when we returned. We are going to try allergy shots - going to Dr. Bouboulis this week to start. I would absolutely remove the mold. Just make sure you really have it done well.

mcturro - wondering what you did and how things were going for your child? My DD has been doing very well but reacts to mold spores, so when June rolled around so did her OCD. It was getting really bad. Dr. B recommended allergy shots, but I'd like not to do that if possible. Plus that would take a long time to be effective. We just bought 2 HEPA air purifiers - Alen BreatheSmart and the Honeywell True HEPA Allergen Remover HPA300. We have one upstairs and one down in her playroom. We had the Honeywell first and it helped a lot, but after we got the Alen, she said the OCD was gone. Not sure if its the Alen or having two instead of one. Alen is expensive, but so worth not having her flair. Thought this might help you or someone else

Just call and get on the waiting list; you can always cancel. We traveled from CT to Florida to see a top PANS doctor. Well worth it. Having a knowledgeable doc is key to healing.

You have one of the best resources for PANS/PANDAS right in California at Stanford. I would recommend getting on their waiting list. They actually have a PANS clinic. Top, Top doctors. http://www.stanfordchildrens.org/en/service/pans-pandas

2 quick thoughts. I'm not sure that Amoxicillin is the best choice for PANS. Most kids use Azythromycin or Augmentin. 2nd is that you should not participate in OCD rituals - a BIG mistake. You have a long road ahead of you and a lot of reading to do. A good place to start is this website started by the top PANS doctors in the US. It will help educate you: https://www.pandasppn.org/ 2 excellent books to understand OCD. The first for you, the second for your child: http://smile.amazon.com/Freeing-Your-Child-Obsessive-Compulsive-Disorder/dp/0812931173/ref=sr_1_1?ie=UTF8&qid=1442091146&sr=8-1&keywords=children+ocd+chansky http://smile.amazon.com/What-When-Brain-Stuck-What-/dp/1591478057/ref=sr_1_1?ie=UTF8&qid=1442091089&sr=8-1&keywords=children+ocd During a flare Ibuprofen can help. I give my DD 2 doses a day. You should consult with your pediatrician before doing this. Make sure you check his Vitamin D level and get it up to between 50 - 80 (recommended by most PANS/PANDAS docs). My DD takes Azythromycin and we have had great luck with that. I give her 2 doses of probiotics a day - Florastor and Culturelle (not within 2 hours of ABX is best). Also, Omega 3s are very helpful with PANS children. We use Nordic Natural Ultimate Omega Juniors. Good luck.

Make sure you are giving probiotics, but not within 2 hours of the antibiotics. Florastor and Culturelle are very good.

Thanks, this is really interesting. I found a huge improvement in my DD when we started her on Omega 3s, and then even more improvement when we upped her dose of them (recommended by both Dr. Murphy and Dr. . FYI - I give her the oil in 2 doses, morning and then evening.

This is a good website started by the top PANS doctors in the US. It will help educate you: https://www.pandasppn.org/ I have never heard of injections before but have not researched it either. Did your doctor discuss supplements with you? Most children are on Omega 3s and vitamin D, amongst others. Ibuprofen was also a huge help to my DD. I would do 2 doses daily - one before bed, and one after breakfast. The best things we did for her (who is a real standard case of PANS) was to raise her vitamin D level to over 50 ng/ml. I use NatureMade D3. HUGE improvement. The PANS docs want it ideally between 50 - 80 ng/ml. This takes monitoring thru bloodwork. If she is below 30, try 3000 IUs daily to start. Once you get it up in the range, you can reduce the dose(my DD is now on 2000 IUs with a level of 70 ng/ml). The next huge thing for her was Omega 3s. I give her Nordic Natural Ultimate Omega Junior - 2 pills/2X a day. HUGE improvement.