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Topaz1968

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  1. Hi - yes, he was actually diagnosed with Pandas as well and was treated with Antibiotics for several years. I recently took him off of them based on a decision made by myself and some doctors. I think he can get worse with the addition of any infection, but the doctors and I agree that the other issues are separate from Pandas. It has been a long road with ups and downs and a lot of different issues that come and go. It is very difficult to diagnose him with anything specific due to the fact that he has a little of everything but not a lot of one thing - if that makes sense.
  2. My son is 12 and was diagnosed with TS when he was about 8 years old. They have waxed and waned over the years and it is never severe, but recently, they have gotten a lot worse. He never really had a vocal tic, but now he has one where he sounds like he is making a "farting" sound with his mouth. (sorry, but I don't know how else to describe it). It is far worse when he gets home from school, since I think he tries to supress it most of the day. We recently got into a program at Yale, and they told us about Habit reversal therapy. I was curious to find out if anyone has tried this wit
  3. MY DS11 has similar symptoms as yours. Speech issues, OCD, some mild anxiety, social issues, sensory issues, intermittent vocal and motor tics etc. He, too, is moving on to middle school next year. I have tried probiotics twice in the last year for trials (once for about 3 months then for about 1 month) and both times his ticcing got worse (probiotics that DID NOT contain Strep strains). Ticcing improved going off the probiotics. I made a direct cause and effect relationship (twice) thus I am not a big fan of probiotics for my child. Your son does seem to have diagnosis all over the map? P
  4. Thank you TwoSocks and Ozimum Twosocks - I hope you find the info you need as well. Hugs to you and your son as I know exactly how you feel. I think because Pandas is such a new and sometimes controversial diagnosis, it is very hard to find concrete information about it. Still trying to solve the puzzle!! Ozimum - I was thinking of trying to find a DAN doctor, but I was not sure exactly what they do, so I am glad you explained it to me. My son was tested for food allergies, but not found to have any. However, maybe there are some vitamin/mineral levels that are off. I apprecia
  5. Yes, I did want it in this forum as I thought PDD-NOS is a form of Autism. If you think there is better thread for it, that is fine. Just not sure which one. Thanks so much
  6. My 11 year old son has had the gamut of diagnosis's his whole life. It started with speech delays, and then lots of question marks from teachers. No one could ever put a finger on what was "wrong" with him. There was never a clear cut diagnosis until a few years ago. He started having tics in 1st grade and they continued off and on for over a year, so he was diagnosed with TS by a Neurologist. About a year later, he started to have Obsessive thoughts and other anxiety issues, along with hives. Not sure if the hives were ever related, but the OCD behavior was then diagnosed as Pandas fro
  7. Well, he was diagnosed with TS after having tics for over a year, that started in first grade. The problem is, I don't remember him having strep anytime right before then. Anyway, I brought him to a neurologist who diagnosed with the TS, but it was fairly mild at that point and would come and go. Pandas will still very new, so my Pediatrician did suggest ABX, but he was only on them for about 10 days. It did not do anything to help. My father is an immunologist and a friend of his told him about the Pandas. That is when I found Dr. B. We are lucky to live only about 1/2 hour away and af
  8. I know how you feel - it is so frustrating to watch everything fall apart. So sorry you are in a bad place right now. You were very brave to extend apologies. I had not noticed anything, and from the sounds of it, no one else really did either. It is completely understandable to be angry when all is going wrong. I truly hope things get better for you and for all of us. It is lonely and I don't know where I would be without this group, because I get absolutely no support from my Husband, so I kind of know how you feel. Good luck Rachel
  9. Well, he was diagnosed with TS after having tics for over a year, that started in first grade. The problem is, I don't remember him having strep anytime right before then. Anyway, I brought him to a neurologist who diagnosed with the TS, but it was fairly mild at that point and would come and go. Pandas will still very new, so my Pediatrician did suggest ABX, but he was only on them for about 10 days. It did not do anything to help. My father is an immunologist and a friend of his told him about the Pandas. That is when I found Dr. B. We are lucky to live only about 1/2 hour away and af
  10. Nancy - thanks so much for the wonderful information and advice. I really do not want to medicate him, as we have tried a couple in the past without any success, but it also makes me extremely nervous. I think I want to know that if he is having mood swings, it is not from a certain medication. I think I will hold off as long as possible. He is currently seeing a therapist who specializes in CBT but not ERP. I am going to talk to her about it, because I really like her, but need to look into the ERP. I will definitely start to try and introduce some nitrate-free food. It is funny, bec
  11. Thanks so much for all the great advice. DC - we did a reward system over the summer and it did help a bit. I hear you completely about giving in to make things easier. Unfortunately, I am totally guilty of doing this over and over again. I am such a peace maker and I want things to be calm, that I give in a lot. I need to stop doing this because I am sure it is not helping. As much as set guidelines, I am not good at sticking to them. My next plan is to make a chart that includes daily goals, including taking medicine. If he can fill in all the boxes - he will earn something at
  12. My DS is 10 and just entered 5th grade. He was diagnosed with TS and Pandas about 1 1/2 years ago. He has been on Antibiotics (Augmentin) off and on during this time, as well as 2 trials with Tenex and 1 trial with Clonazapem. He has also had 2 steroid treatments. He sees Dr. B in CT. He does not like taking pills, I literally have to force him and give him a treat afterwards, so it has been hard with the huge ABX pills. I also want him to take Motrin - but he refuses. Again, the taste bothers him. I am sure this is part of his OCD. His OCD, anger and tics come and go in waves. I n
  13. My son did get hives last summer, but not sure what caused them. After taking him off all meds, they did not go away. It is possible that the antibiotics started it, he was on Augmentin. But, to be honest, they just got worse and worse and he was on Benadryl for a while. He was tested and nothing came back positive, so the doctor finally said it was from exerting himself, but I am not sure if that was it or not. Luckily, he has been on Zyrtek for about 4 months now and it was a life saver - no more hives or anything. I wish I could help, but it is strange that we both ended up with th
  14. Great link - thanks for sharing - I just sent the link to my son's school social worker, teacher and nurse.
  15. I have one somewhere. It is from the Neurologist. Usually doctors do have them. Did you ask the doctor? It does not have to be anything really formal, just something the school can see that shows a medical diagnosis and that your child may need certain accommodations, such as longer test times, leaving the room to take a test, etc. Do you know what you would like in the 504 plan? It may also help to ask the school for a form, to see if the doctor can just fill it out. I do have one, if you want me to scan it and email it to you - just let me know. Rachel
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