MyLighthouse

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 friends, they don't understand a good deal of the work. They are 15 year old girls in 15 year old bodies functioning themselves at a 9 or 10 year old ability trying to fit in with these high school kids. Tough stuff but having them home is tough now too. I love home schooling, it was so much of who we were but that has all changed. We have rages (though we started homeopathy in Feb and that has really decreased but now they are sick so???) and moods,and honestly I am afraid at times. It IS hard to know what they can control. We never would have thought our family would be in this position...EVER. I think it is hard when they are in HS. How do you get through? They don't want to do much of anything. That all being said, I will not lose hope for recovery.

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.

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.

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.

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 helped me so much. There is much research to support it and you can read about it online. You cannot buy it in stores, so you will need to google a place online. Make sure they pack it in ice to keep it cold.

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?

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 essential oil program. It will be 2 years in April that this happened to us and it was just in September that we found out that is was PANS. We too are struggling in school. I am not sure she will be able to finish this year. She can't focus and doing homework, well let's just say it rarely happens lately.

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 getting better?" and "Herbs, Hormones and Heavy Metals." There are a couple different presentations on "Why am I not Getting Better" topic. The presentation on Herbs, Hormones and Heavy Metals is fabulous also. Something to consider looking into.

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.

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 mycoplasma. Now that we are treating for mycoplasma we are seeing some of the residual (some depression, fatigue) symptoms slowly go away with our first daughter. Our 2nd PANS child (that had the sudden onset, severe obsessive thoughts) is doing so much better now. I will say that with her no amount of CBT helped us. I do strongly believe that if you are dealing with anxiety and obsessive thoughts with rituals that CBT is a very good thing. I also will say that we did once a week group therapy for a number of weeks but doing the intensive gave great results fast! Having a group of kids and parents supporting each other and cheering each milestone was important, as well as working all day long everyday in a row was great. We knew this was our focus (no school, no activities) to stop the flow of hard work. I never would have dreamed that my daughter would have been able to gain in 5 days what she did with her anxiety, anger. With the reduced anxiety the rages were less. Now, the kids with OCD with rituals did need more time to work on their issues but they were equipped to know how to proceed forward.

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 upset. After reading your post, it makes me think the steroids gave the little extra that we need? With her twin, she is different. She is starting meds as a girl that is withdrawn and can sleep a lot. This girl that loved to be by other kids does not interact as much. Without going into her history, she did not tell us things that have been going on in her head. She has been obsessing over things, hearing some voices and seeings movements that scare her. She has cried 2x in the last week (which I was thrilled to see some emotion!) and said that instead of hearing voices 10x a day, it is only 2 or 3 and she does not see movements as much. We never knew this was going on. Two years ago right now, she was a wreck with anger, anxiety, some OCD, to the point where she could not go into the dance studio, into a clinic or go to school many days. We ended with a girl that is better on the outside, but still not well on the inside. My plan is to see a naturopathic doctor that specializes in PANS/PANDAS/Lyme, immune, and digestive issues in the next week or so. As for IVIG's, our primarily OCD daughter does not qualify because she has such low IGA's. How are your children doing now? How is the OCD? What do you think helped the most? Can you tell me what a steroid infusion is? It would be nice to talk sometime. Thanks for the replies.

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 has not wanted to live. I learned of PANDAS and her onset was so clear with the illness. We finally did the cunningham panel on her this summer and it came back with higher Cam Kinase and Antitubulin. It was then that we started doing more in depth bloodwork on both girls and found mycoplasma. Our one daughter that had just he obsessive thoughts is doing so much better on antibiotics but still those thoughts are there. She is all excited when her mind is clear and relaxed and then later in the day, the thoughts are back. It wears her out. Her sister on the other hand who had all the anger and anxiety that went through extensive CBT that helped but left her withdrawn finally opened up once she found out she had high mycoplasma too. She said for the past several months she hears voices or sees movement around her. She did not ever tell us this before. Now on biaxin, the number of times she hears or see things is greatly reduced. I know this is a long road ahead of us but I would like to hear from others about their treatment with mycoplasma. Have you used Bruhners book or other herbal remedies, naturopathic doctors? What has helped? I also want to say that the daughter that presented with all the anger, anxiety, ocd and sometimes rages, was helped with intensive CBT and some SSRI's. Had it not been for her twin sister getting this, I am not sure we would have ever tested her. I knew that things started to happen to her in July before 6th grade and it escalated from there. At the time I knew nothing about PANDAS but when I did learn about it over a year later, I didn't recall her being sick and because she was so much better (at least we felt she was) we would have figured that this is who she is now. I say this to let others know that things can settle down (I did find a research paper showing how CBT can help in PANDAS children, although I do think it is rare) but your child can still be sick. This is such a devastating illness and it takes the life out of you and your children. We are so thankful to know what we are dealing with.

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 do that. We started with the Cunningham Panel but you would not need to start there. You could just get LOTS of bloodwork done looking for all infectious agents. Ours happened to be Mycoplasma Pneumonia. Until you test and know for sure, you will always wonder.......so why not test.