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MaryAW

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Everything posted by MaryAW

  1. 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.
  2. @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.
  3. 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.
  4. 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.
  5. 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
  6. 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.
  7. 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
  8. 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.
  9. Make sure you are giving probiotics, but not within 2 hours of the antibiotics. Florastor and Culturelle are very good.
  10. 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.
  11. 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.
  12. 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!
  13. 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.
  14. 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.
  15. 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!
  16. 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.
  17. 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?
  18. 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.
  19. 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.
  20. 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
  21. 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.
  22. 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!
  23. I'm in the same mess, but it's even worse! The original skin prick was just positive for dustmites; however, she flares when the pollen counts are high (like now!)She has very sensitive skin, so we don't trust the intradermal testing - she tested positive for almost everything. So we did the blood testing. However, she has an antibody deficiency, so we're not sure how accurate that is either (the blood allergy testing checks the antibody response to various allergens). It showed just an allergy to dustmites. So, maybe she really is only allergic to dustmites and she flares because her immune system is so inflamed? Or maybe she has high histamines? I guess we may do another blood test for this. We need to talk to her doctor. There is no doubt in my mind that the high pollen makes her flare, but how do we treat that if she is not technically allergic? I am so confused. BTW - Dr. B is pro-immunotherapy. Shots, not sublingual. I think they start with a lower dose with the PANS kids.
  24. It sounds like you need to go to an experienced PANS/PANDAS doctor. You can try posting with the subject: PANS/PANDAS doctors in Colorado or you can try the PANDAS Network directory: http://pandasnetwork.org/researchandresources/find-help/usproviders/ Here is a link to a thread that was pinned in the Helpful threads section: http://latitudes.org/forums/index.php?showtopic=5023 If you want to try to educate your pediatrician, here is a link to a website set up by the best PANS docs in the country: https://www.pandasppn.org/ It is worth traveling if you have to and spending the extra money now to see a great doctor, rather than have your child (and your family) suffer needlessly.
  25. Do you know about this book? For us the abx helped her use her CBT strategies. I don't know if we would have noticed anything if she didn't have those strategies to fight the OCD. http://smile.amazon.com/What-When-Brain-Stuck-What-/dp/1591478057/ref=sr_1_1?ie=UTF8&qid=1428858860&sr=8-1&keywords=what+to+do+when+your+brain+gets+stuck
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