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Everything posted by MaxParkersMom

  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]
  16. Hi, We do 375 every day and it seems to knock on wood be working right now. The real test will be when we start school. I just do a lot of praying and hoping.
  17. You'll think I'm crazy but I knew my older son, my husband and I had strep because my son was off his antibiotic at the time and had no motor tics until he came around us and they started like crazy. I knew then we all had to get tested and we all had strep. He wasn't a carrier but my husband and son come to my school a lot to help me. If you think even with blood tests that they have strep I'd investigate how your children act around family members. My son did it to my older father and he came down with a staph or strep infection a few days later. They are like little meters. We all had to go back in and get tested a few weeks later and now starting olive leaf extract to protect us. My older son just takes it when he feels a cold coming on.
  18. I know for a fact that my sons tics were made worse and continued because of the dha and fish oil. Now this is us not everyone but I had started giving to to him thinking I was doing the right thing and realized it was the wrong thing. Then to top it off I didn't realize it was in their multivitamin. Like a dummy I never noticed so we stopped the dha and fish oil and it got better but didn't totally get better until we pulled ALL of it. Then with the Azith it was better and better each day. Now it takes about two weeks for all the fish oil/ dha to clear. If you think there is a correlation stop it. Again this is US not everyone. Some children it helps. Like my son does well with probiotics and some have worse tics. There's no magic pill all children are different. Yes my son goes to my school thank goodness. The teachers are my friends and helped me take care of him. His teacher next year knows about it read up on it and is vowing to do whatever she can to help keep him well. She is going to have a spot in the back of the room so if there is a child with strep he can move. Of course just being in the room will set him off ha ha, but maybe with the Azith he won't go back down the hill. Again when me, my husband and son had strep he was okay around us on the antibiotics so I just pray, pray, pray everyday for strength and protection for my son. The Olive leaf extract is amazing. Now it can't be given to your daughter on antibiotics because it's supposedly a natural antibiotic. Some parents use it in place of regular antibiotics and swear by it. I do give it to my older son when he's under the weather and his colds seem to be shorter in length. I take it for joint pain, hand pain from Fibro. My mom takes it and was a mess and now swears she'll never stop. It is supposed to be very effective against strep even in lab tests. Its a great oil. Again just my experience but I will take it everyday because I feel better, my hands don't hurt, and hope it keeps me from strep. You have to order it. Be careful of the brands because it has to be a certain precentage of the oil in it. I love this board and if our experiences help one person then it's worth it. The smallest posts helped me when it was so bad. I hope I can help someone one day. I tell everyone now our story so they know how dangerous strep, staph, etc. is
  19. I have thought about steroids, but saving those in the arsenal for later I guess if we need them. I can handle 85 to 90% right now. I just figure its such a long journey I have to settle for that and keep some things for down the road. So glad to hear your daughter was good with the steroids for over a year. That is amazing to me. Like I said I just take it day by day and do the best we can. Still, the antibiotics are a godsend and if that ever tapers out we'll try the next weapon steroids or other antibiotics. I just don't want people to give up after a few days or weeks on antibiotics. Like I said the best thing I ever read on this website was do them every day high dose for 1 to 3 months. Who ever initially posted that thank you because at least for now you have saved my child's life.
  20. I do know about his liver functions and did make my Ped. run a panel. I actually had to make him do this because he's not too worried about it. He said he's more worried about brain damage. I am more worried about brain damage too. We do the Motrin a few times a week with food. My sister is a nurse and my dad is a pharmacist. They both told me as long as he eats it should be okay. There are a trillion things we could worry about and this is a battle until he is an adult. I hope he doesn't have kidney failure, but which one is better kidney failure or brain damage. I ask myself that all the time because I don't want to hurt him, but I just throw my hands up and pray. It took 3 months of high dose antibiotics to get back to at least 85%-90%. Someone on this website said do at least one month to three months of high dose antibiotics. The OCD and Ticks were the hardest to knock out. It took THREE months of high dose antibiotics. Now everyone's situation is different. I cannot tell you what is right for you all but for us it has been wonderful. He has days where he has a few symptoms because he'll lose a tooth, or run into someone sick. It is frustrating but I am just calm knowing it is short term maybe a day or a few hours. When we started he was crying, screaming, not wanting us to be out of his sight. Oh the ocd was awful. He repeated things constantly wouldn't leave anything alone unless it was a certain way. He would come to my classroom crying and screaming. He doesn't act as Aspergers since taking the Azith so I do wonder about those type issues too, but can only deal with what I can deal with. Most days he is totally normal and great and we can live with him ha ha. Again you haven't failed anyone. I was very tired but didn't want to start the school year without the tools I needed to fight this awful thing. Ohh we did have strep. When we finally got him calmed down he ramped back up and it turned out my husband, me and my older son had strep. So his brain wasn't calming down. When we all got treated our house got so much better. Also when I pulled the fish oil and anything with DHA it got soooo much better. That stuff was poison to my son. Now I know other children take that fine but I couldn't figure it all out. Once we got the high dose Azith, pulled the fish oil, dha and cleared the strep it got 90% better. Now staph sets him off too and my dad had a staph infection so we had a few moody days with about a week of mouth ticks, but they cleared where before it was weeks and weeks and weeks. I have read Dr. K's page and have been coming here for months. Again these are just what helped us. Everyone's situation was different. Again all the medicines and problems that can occur scare me but what scared me the most was when my son was at his worst he would just stare at me unresponsive. I decided full speed ahead even if we have co issues because a catatonic non responsive child is not what we want. Again I pray everyday and it is scarey and I hope we make the right decisions but I don't want his brain fried, or him to end up in a mental institution. Also the Acidop. Milk in the mornings and probiotic helped so much too.
  21. There is so much I could tell you about and say, but I really wanted to post and say hi and give some hope at least for now. We have been dealing with Pandas for two years and never knew. My son has ADHD (officially) and is on the autistic spectrum (unofficially). He is high functioning and I am a teacher. He is the poster child for being passed over, or left behind by the school system even though I am a teacher and have been for 17 years. In March he exploded with PANDAS/ PITANDS symptoms and of course since he never follows the rules ha ha never cultured for strep, or had the "correct blood work". Still thanks to you all after fighting everyone I have gotten him daily Azith until 25 and my ped. even told me because I fought so hard for my son it will probably save his brain and his future. I actually thanked him for being so wonderful. My ped. was afraid at first and we argued but we took it step by step together and now are working together. I am blessed to have him and others who supported me. My whole point in telling you this is FIGHT, FIGHT, FIGHT to get a high dose of daily Azith. It wasn't until we kept my son on the high dose Azith. that he finally started coming out of it. He had horrible ticks that looked like his neck would break off, ocd, short term memory problems, etc. Now is it always 100 % gone. No of course not and when he gets around strep or stap especially it can be bad for 3-4 days but he usually snaps back. The AZITH is fantastic. Yes he still has some symptoms but I cannot tell you how much it reversed everything. We may have a few bad days here and there but it is NOTHING like it was. Antibiotics, especially the AZITH did reverse the inflammation and I still believe everyday it keeps it down. We use Motrin when we need a double whammy, for example when my son lost his tooth the other day. He is going to school in the Fall and continued to go to school during this. I was scared and it was hard. He will be exposed. Again do I expect 100 reversal of all symptoms, no, but the Azith does work for us. I pray it keeps working since he has a loooong road and a long way to go. Still for now we are doing much better. Also we all do take the Olive Leaf Extract to protect us and it reversed a lot of my Fibro. Yes, it sounds hard to believe but it did and it helped my mom's problems too. So we are keeping strep away hopefully and helping ourselves too. I felt like I was drowning and some days I still do. I worry about my older son and now realize he may have had it too growing up. Still, you have to keep fighting and don't give up. I am so tired I cannot tell you how tired I am, but there is hope for these kids. He does take probiotics everyday and he drinks Acidop. milk each morning which has been wonderful. He eats hamburgers all the time to keep his iron up and takes a good multi vitamin with no minerals. This is just what we do. You have all been such a support I felt like it was time for me to post my story and share. Thank you because I would not have made it without you all. Also daily anitbiotics are not for everyone, but the AZITH is wonderful if your child responds to it. If they don't find one they do respond too and have faith and go for it. Daily antibiotics saved my son. Now this is just our story and you might be different, but if you are on the fence maybe this will give you the support to jump over. After two years of h-k the AZITH saved my son.
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