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Everything posted by MaryAW

  1. 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
  2. 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.
  3. 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.
  4. 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.
  5. @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.
  6. 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.
  7. 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.
  8. 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
  9. 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.
  10. 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
  11. 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.
  12. Make sure you are giving probiotics, but not within 2 hours of the antibiotics. Florastor and Culturelle are very good.
  13. 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.
  14. 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.
  15. If ibuprofen was helping, you should continue with it. I had my DD on it for 2 years with no negative effects. I would do 2 doses daily - one before bed, and one after breakfast. The best things we did for our DD (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 he 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! No flares for her since January, and that was nothing major. Her overall health has improved too. God bless and good luck!
  16. My DD tested positive to everything on the intradermal test. My dr said that some people's skin is so sensitive that they test positive even though they are not allergic. On the blood test, she was only allergic to dust. I asked about allergies at a conference once, and Dr. Swedo said that the child's immune system is so inflamed that it may react to the allergens as if if they were allergic. Just like Hopeinhim, I have seen my daughter's allergies decrease. She used to flare from spring till the first frost. Each year we have seen improvement, with now just a reaction from mold spores. Getting the vitamin D level up to above 40 ng/ml (50-80 is best) and giving a high quality omega 3 (we use Nordic Natural Ultimate Omega Jr. - 2 pills twice a day) helped us to see a HUGE improvement in every aspect of our DD's PANS.
  17. I'm so sorry for you. My heart really does ache. All that effort, so sorry. Do you think they pushed her too hard or just that she wasn't ready, or both? I'm very nervous about doing this, exposing her to all of these fears when she's not at home with her daddy and her dog. I don't know what to do or when. She hasn't flared since January, but the fears are really ingrained in her.
  18. I commend your doctor for this! I have homeschooled my daughter for 3 years now, and she is doing so well. She was constantly sick when at school, and it was a vicious cycle. She goes for several months now without being sick. There is no doubt in my mind that this has been a huge factor in her recovery. It was scary at first, but now we both love it. What state do you live in? Find a homeschool group in your area and ask them about online schools and other resources. They are such a kind and helpful group of people. There are online schools too. Start Googling! You can do it! It's worth the effort!
  19. I'd go to Dr. Murphy at USF, Rothman Center, if she's seeing new patients. Otherwise, Dr. Williams because of the entire MGH clinic. Either place you get a full staff of knowledgeable people. I flew down to Fla with my DD to see Dr. Murphy. My DD has not had a flare since January now. I was soooooo impressed with her.
  20. I need to do this too with my 11 year old DD. I wish we could be there with you! How did you find the condos?
  21. This is huge! Great news! The only problem is that you need to be a subscriber to see the main article online. My husband is running out to see if he can buy a copy. The 2nd link is available to everyone.
  22. Have you tried ibuprofen or omega 3's? During a flare I always put my DD on ibuprofen - big help. Omega 3's are also an anti-inflammatory.
  23. Is the IVIG covered? Is there a reason you are hesitant to try it? I would think, if you have truly tried everything and not had success in 5 years, why not try IVIG? This is the new site created by the top PANS/PANDAS doctors. It may prove helpful to you and your current docs: https://www.pandasppn.org/ Maybe you can find a dr. who will give a 2nd opinion, and takes your insurance. List of providers in Ohio from PANDAS network: http://pandasnetwork.org/researchandresources/find-help/usproviders/#OHIO
  24. FYI - my DD is PANS. I can't say for sure what was behind Dr. Swedo's comments. I know she is very concerned about strep prevention. However, Dr. Murphy, whom I respect deeply, says that abx have an immune modulating effect (calms it down). So, I'm not sure if it's strictly strep prevention or the effect on the entire immune system that she was concerned about. I know that if my DD goes without her azithromycin for more than 3-4 days her tic comes back. when we put her on the abx it goes away quickly. My non-professional opinion would be to monitor your child. If he stays at baseline then I wouldn't do the abx. If it looks like he is starting to revert back, I would think long term abx until one year symptom free would be wise.
  25. I wonder what exactly "state mandated" means. Does this mean that all doctors in CT will have to learn about PANS/PANDAS or just from this medical center. Very interesting!
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