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  1. My healthy son who does take meds for ADHD started ticking out of the blue for no reason. He has been on other meds since he was five so we knew it wasn't it. We just ignored the tics for almost a year (Yes I was stupid) until the ocd and horrible separation anxiety started. He did not test for strep but presented with the strep bumps in his throat mouth so thank goodness my PED was aggressive and didn't fight us. He did have some bumps on his arms and wondered about empentigo. I also wonder about Staph because I think he has been set off by that too. Who knows? It's just important to get the help you need and the treatment you think your son benefits from. I kick myself because I wonder if I had been more aggressive at the time could I have stopped all this in its tracks. He could have lyme but they never ran panels and we have already been on antibiotics for months. I do wonder would the lyme still show up. Thankfully he is okay right now, but I have fears and hope it never gets worse. I wish the medical community would stop denying about Lyme and PANDAS and start treating. So many people need help.
  2. Hi, My son is 92 pounds and takes 375 Azith a day. If you feel you need to up the dose or do another antibiotic with it then go for it. I am so sorry you are having problems again. It is very hard. I had to skip two days with my because his stomach was yuck. When that happens every now and then I do back off. His emotional yuck, ocd started raging back after the second day. I gave him Motrin which helped, but I know in my heart the Azith really does help the brain in different ways. Let us know what happens. Epsom salts are awesome. You can also try the hydrogen peroxide baths. This is awesome too. I worry because my son has swam in a hydrogen peroxide solution all summer in our pool. It cleans the skin and calms him. I worry when we have to close the pool. I got solar panels so I could keep it open longer. I guess they will be swimming in my bathtub. Going under the water really cleans out his sinuses, etc. Have you checked your family, pets for strep. Like I said shot in the dark, but when my son starts someone has staph or strep. Anyway let us know what happens and we are here. That's why I love this board.
  3. Oh yeah another shot in the dark. We are not swimming in chlorine. I have heard this can really bring it all back. We do the Bacquacil which is hydrogen peroxide. I have noticed since swimming in it he is a lot better. I think during the year I am going to continue with either hydrogen peroxide baths or epsom salts. I never would have believed it but it does seem to help him. I also during the school year scrub my boys down with bacterial wipes. They need to be exposed to some bacteria but I think my son was getting Empentigo or something. Have you checked their skin for bumps, rashes? This can set them off and I do believe my son had this. He might have had Mycop too but we only have so much money so I just sort of did what I could and have decided to manage the best we can. Don't lose hope. Have you started any new vitamins with fish oil? This sets my son off too. Not trying to ramble just trying to think of things that might have changed with you or set your children off again. If you need to talk write me. The journey is hard alone.
  4. My son is on a stronger dose, and he is tic free right now but if he runs into a virus or a strong strain of strep the symptoms come back for a few days and he might start ticing for a few weeks. The Azith has reduced this happening so much, but it doesn't get rid of it completely in my son. I am preparing myself for this when school starts. What the Azith does is hopefully keep them from getting strep themselves and from completely falling down the hill and bouncing back faster. Maybe I'm wrong but because they are so sensitive it is not a cure. Now for some it may be and it's going to be hard for me because my son has been tic free for at least two months. I still expect him to hit someone and have some symptoms and some tics, but bounce back. If you can handle it maybe give some Motrin twice a day and see if it remits. The tics always linger for awhile with us. Also see if someone in your house has strep or an animal. They usually start up again when strep is around. When that happens to us I check for strep and Lysol, etc. I am trying not to up Azith because I was told they are supposed to be on antibiotics until 25 so that's a long time. So sorry and hope it gets better.
  5. Both my parents are diabetic type 2 and it runs horribly in my family. My dad had ITP and there are so many immune issues it's awful. On both sides there are. My son got blasted basically. PANDAS is autoimmune. Sadly my son is one of 3000 patients in our practice with it or actually diagnosed with it. I wish they would hurry up and excempt them from vaccines. His ped still wants him to have his middle school booster and I don't in a few years. Glad we have a few years to fight about it.
  6. I sometimes skip and do every other day, or two days if my son seems stable. When around a lot of children I don't. He has been on them for 3 months and I am experimenting now. I will never take them off of them until past 25 if the doctors play ball with me. Do what you think your son needs? Does anyone do lemon water here to support liver functions while on the azith??
  7. Hi, Even though I am blessed and I am at school with my son I am still worried. Our summer has been so good and we have been grateful. I worry he will go back, be exposed and it will all start over. I know I should be positive and I am trying. He is on meds which will hopefully keep him form the darkest of this horrible disease. Still, the meds don't protect him against viruses and I know he will still eventually have some symptoms or maybe start ticking again. I just hate waiting for the other shoe to drop and wish I could just get past all of this. I try to enjoy everyday that is good, and know if the symptoms hit they will eventually go away. I hate letting out my anxieties here but it is the only place in the whole world that I feel able to express myself. My husband and family are wonderful, but for their mental states I try to not say too much. It is just sad to lose your child, or see them start ticking when you've actually been tic and symptom free for awhile. The positive is a lot of the effects of PANDAS seem to have remitted and he doesn't have the short term memory loss, etc. I am curious to see if he will do better in school and not struggle so much this year. He wants to be on the honor roll again and is excited about his teacher. I bought her cans of Lysol and wipes and told her whatever she needs to keep the room clean I will get her. You would think the school system would supply them, but they give another type of spray that I do not feel is up to PANDAS Par HA HA
  8. I am glad your son can take it with no problems. Our son can't take it. Was going to try fish, but think since he is doing well and about to start school I will hold off.
  9. Hi, I LOVE when people post they are doing well. It is interesting about the fish oil. I have thought about making him eat fish, but I do not think I will based on some of the posts. I love sharing because we all learn so much.
  10. Olive Leaf extract is supposed to be a natural antibiotic, which I am starting to really believe since I feel so much better on it. They say it can counteract real antibiotics so we don't take any chances. My son on the Azith doesn't take it because I want to make sure he gets the full antibiotics effects. Still, if anyone is doing something different and it's working, or if you've been told anything different that great too. Just going on what we've read been told. It's wonderful and has helped my whole family.
  11. My son has been on Azith either every day or every other for at least three months straight and before that on and off since March. It is an amazing drug that reduces inflammation in the brain. For us the azith is not just about protecting against bacterial infections but also getting down that brain inflammation. My son is I'd say 90 percent back to normal which I am happily taking right now. I would not go below 250 but that is my opinion. I would keep doing either every day or every other with probiotics to protect his stomach. My son's neurologist told us he would need antibiotic protection until he was 25 years old to make sure all the symptoms were not going to become permanent. We cannot use fish oil because my son has negative response to it with an increase in PANDAS symptoms. I have not been on here as long as everyone else, but that is just what we are doing. I know I never want to go backwards so as long as my son responds to the Azith I would keep him on it. I am certain if we stop the brain inflammation would come back. If you need too print out all of these posts to take to your doctor and let him read them. I did that and will continue to do that so that I can fight and get treatment for my son. Good luck and I hope this helps.
  12. Hi, I am so happy too see this article. My son had all the clinical symptoms of strep including the bumps in the throat but never officially tested for strep. It caused issues, but that goodness I had some good docs that thoughts outside the box. I am so happy the boy in the article got help and the mom is spreading the word. We need to explain to the world that the strep can be hiding in the body and that you always don't have to test for strep.
  13. My son to this day is up in the air diagnosis wise. My Ped says Pandas with ADHD, my neuro says strange tick disorder that responds to Azith. The point is I had to get past all this and just push for what I knew was helping him. If you don't get an affirmative diagnosis then just push for what your parental instincts tell you. Do what's good for him. If I hadn't fought so hard and finally told them to get over trying to put a label I never would have gotten help. Now this is just us, but do what you need to do and get him better. We all need vacations as hard as we have to fight doctors about this. My dream is they will get past all this one day and just treat our kids. It sounds like at least your doctors are working with you which is wonderful. IT took us awhile.
  14. Hi, I am sure you have discussed this before and I have seen a few old posts but I am curious. For us fish oil or DHA in any form makes my son have ticks, pandas symptoms. I know for some children it makes them better. Let me know if it helps or hurts your child. Doctors seem to be pushing this which concerns me if its really not good for them. We all take olive leaf extract, except my PANDAS son because it hurts the antibiotics action, but to me if fish oil is not good why are they pushing it? Now if it helped your child that's awesome. I just don't get it. They do hide it in the superhero gummy vitamins and once we pulled those too it seemed to be the last key to helping him get better. Then the Azith was just fantastic. Again crossing fingers hoping it sticks for awhile. Just curious
  15. For us fish oil in any amount was not good for our child. It made his ticks worse. I know some kids get better on it but I have read it can make the tics worse. I would pull it and see how they do without it. I was shocked that his ticks got so much better and then even better with the Azith. I told my son that he had no choice and take the liquid because he had to get better. If he didn't then he would have to learn how to swallow a pill. I made it his choice. He got tired of the liquid and started pills. He gagged many mornings and would just stand there, but then eventually it became easier. I did this with my older son too. He could take pills or keep tasting his ADHD meds in the morning which were awful. He also made the choice and started gagging down pills. Now we leave the house at 6 in the morning so I am mean and grumpy ha ha, but they made the choice. They have to get better and this medicine is the key. I try and make my sons a part of what's happening to them and give them some choices. Again this is just us and there are a lot of other families I am sure that can help you more. [/size]
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