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MyLighthouse

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Everything posted by MyLighthouse

  1. We are in a tough spot ourselves with our twin 15 year old PANDAS/PANS girls. We really struggle with how much we've missed the boat behaviorally and possibly could have prevented some of this. We too home schooled and loved it. We lost both our girls to this horrid disease within 9 months of eachother, and we didn't know about PANDAS. Now three years later, we are in public high school, on an iep and still really struggling. This term we are having a hard time going to school at all. You start to wonder if this is a choice on their part,and at times it might be. It is hard. They have no frien
  2. I am wondering if anyone has done a non-GMO diet and had good results. Been reading a couple websites (www.safeplate.net and www.momsacrossamerica.com) and found it interesting.
  3. I would like to hear how your appointment goes. I was close to seeing him but he could not get both my girls in real fast so we went a different route. Let us know how it goes. Thanks.
  4. Sriramcs, I am wondering how things went (or are going) with the oils. I would love to hear. We are starting on the road with oils too. If possible, please respond. I would love to talk with you personally but I don't know how to make the connection. Thanks.
  5. llm, thank you for your post. I am glad to hear that you are having success with Bruhner's herbs. I do have the book and will go that route if we don't see success with the essential oils. Are you doing the herbs on your own or do you have someone helping you with your protocol? May I ask what infections you are working on? Johnsmom, I too have ulcerative colitis and taking antibiotics are very hard on the colon. I have been told to avoid antibiotics as much as I can. I wanted to tell you about a probiotic called VSL#3. It is designed for people with crohn's and colitis. It has hel
  6. I was wondering if there are others in this area that might want to meet once in a while and maybe in the future start a PANDAS/PANS Group?
  7. My daughter is 14 and she has high level of mycoplasma. Her main issue is obsessive thoughts and it is horrible. Yesterday morning she felt great. She got up early and said her head was so clear. She was happy and herself. By noon she wanted someone to kill her. We have been off antibiotics since mid January and things have been getting worse. We just feel we can't keep putting antibiotics in her. This is an autoimmune disease and I believe it starts in the gut. We are using the book " The Microbiome Solution" to heal our leaky gut. We are also about to embark on a serious essentia
  8. We are dealing with high mycoplasma for 2 of our children. We have been on clarithromycin for a couple months, azithromycin for a month and doxycycline for one round. We take curcumin for inflammation, an initial steroid burst, and supplements for immune support. We are currently on fluconazole for yeast. We are better but not 100%. We still do have mycoplasma though. We are thinking about trying Dr. Horowitz's protocol of multiple antibiotics for bacteria without a cell wall. You can google him (he is a lyme doctor) and he has several presentations on youtube. One is "Why am I not ge
  9. We too found CBT helpful. This was before we knew it was PANS. I don't know how or why, but our rages, anger, anxiety quieted so much. If you are in the Midwest, consider looking at Mayo Clinic in Rochester, MN. They have a one week intensive that takes insurance. We had people in our group from all over the country and Canada.
  10. I want to say that we did the same thing with our daughter at Mayo Clinic in Rochester, MN. We did a week long intensive and the pre/post difference was huge. We were dealing with severe anxiety/anger and some obsessive thoughts (no rituals). CBT/ERP got us to a more manageable family life. We did not know about PANS/PANDAS at the time we went . It was a few months later when her twin sister got sick and started having obsessive thoughts (very severe overnight change) that I started researching. We did the cunningham panel and then blood work and found we are dealing with very high mycop
  11. Thank you for the posts! Yes, we are seeing a PANDAS/PANS doctor and we are on week 3 of Biaxin. We did a 5 day steroid burst at the beginning. They take Fruit Anthocyanins and we just started enhansa curcumin. We started to see some results on day 6. By day 10 our primarily OCD daughter started to takes a shower, put pj's on and brush her teeth before bed, and she had desire to live! But this last week, her evenings are harder. Her days are up and down. She will say, "I think these meds are working, I can take in my surroundings", etc. Then a little later, she will fall apart and be up
  12. We have twin girls that are 14 that have just started on Biaxin recently. They were found to have high levels of mycoplasma and both presented differently. Our one twin started with symptoms 2 years ago with anger, depression, anxiety and a few months later, OCD. Then the following spring as she was going through an intensive CBT program, her twin got sick with a high fever, sore throat, and cough. During this sickness she had obsessive thoughts. I figured she just had a high fever and it would go away. Well, it never did. The obsessive thoughts became so intense this spring that she
  13. My heart poured out for you as I read. The emotions and feelings are so real, so close to my surface. I have twins with PANDAS. We are starting our first round of treatment now for mycoplasma. From our experience I would recommend anyone wondering if it is PANDAS/PANS to get a host of bloodwork done right away. You don't need to tell your friends/relatives outside your immediate family that you are doing this. When you have some facts and if it looks like you have some bloodwork indicating an infection of some kind, then find a doctor to get the help you need. It took me a long time to
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