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Missmom

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Everything posted by Missmom

  1. Sorry, I have not read your first post, but just curious did he test positive for anything? Has he been sick lately or had any vaccine? Anything that would stimulate his immune system. If your answer is no to all of these, I would say no pandas/pans but if any of the answers are yes, I would dig further. Zithromax may not have been the right antibiotic.
  2. Very good. Please keep us posted in a few days and let us know if you notice any improvement. What antibiotic did they prescribe?
  3. I would say yes as we'll. It tells me that your child's tics are infection related. Don't be alarmed if the tics come back though if you are only doing a short trial if antibiotics. It may take several rounds before things really subside.
  4. Just wanted to chime in and say that twelve was probably the toughest year for my son. Not only are they battling all of the illnesses and such, but when you add in all of the raging hormones it just catapults into orbit. I must preface this by saying that my son does not have Lyme so I cannot comment on that part of your question, or give you any sort of medicine or supplement advice but I just want to say that I do have hope for your son that it will get better. My son is now 14 and has already had three weeks of school. He is making all a's so far and I am very proud of him. He is still talking antibiotics and his doctor wants to continue with that till he is 15. I hope by then to begin weening him off of them. There is a lot of strep going around at the moment so it still makes me nervous each and every time I hear that word.
  5. Exactly, you may have to beg and plead with some doctors and give them your best (sad eyes) face you can muster and maybe they will start with some labwork. Allergy testing would be great if it is covered by insurance as many people here have dealt with mold, and gluten, and seasonal stuff, but don't be surprised if that is just a piece of the puzzle. I think your sons system may be just totally overloaded right now and it needs to get back to a manageable place. You can start with treating allergies and using supplements, but most of us here have found that it usually takes antibiotics or ivig and antiinflamatories to at least begin to get the body back to a normal starting point. After you get him to some sort of baseline then it is best to start some type of maintenance program to keep his system strong. I give my son prophylactic antibiotics at this point because his flairs are at a minimum right now and I don't want to mess with anything right now. He is basically taking antibiotics to prevent strep and other infections. Especially now that he is back in school and strep has already surfaced in some of his classmates. I think we caught everything early enough that we have not needed to have any ivig or any of the big gun treatments at this point. If you can get your sons system calmed down and get his symptoms manageable then you could possibly get through this without any of the major expense of ivig and such.
  6. You have to find another doctor if you want to get to the bottom of all of this. You may be surprised at how many open minded doctors there are out there who will at least listen to your stories and maybe do a trial of antibiotics to see if your son has any hidden infections. I would think you could find someone locally that would accept your insurance. That strep infection that he had in kindergarten may not have been completely cured and even though the fever broke it is, his body is still reacting to it. The only way to know for sure is to run some bloodwork. Also, even though my son is being treated with antibiotics he still reacts to viruses in his system.. It is just system overload for him. I have noticed lately that when he has a wart on him his tics start to increase, then after I treat the wart and it starts to go away the tics subside. He has had this stubborn wart on his hand and it just keeps coming back. This definitely sounds like your son is dealing with pans/pandas to me. With te sudden overnight onset of tics and all of the anxiety/intrusive thoughts. That is exactly how I first became aware of pandas with my son. He had overnight onset of tics. It is scary and you will have to fight for him. Our pedi did not believe me at first either, but I begged and pleaded with him to please run the bloodwork. I guess my pleading worked because he did agree to run the labs( I think he just wanted to get me out of there). When my sons numbers came back positive for strep the pedi was shocked, he said he now believed I was right and that he did think it was pandas. He said he had never treated it before but he was willing to help. Well Duhhh.... The reason he probably had never treated it before was because he never tested for it before. The augmentin he prescribed made an immediate difference. Within 48 hours my sons tics were about 90% better. He then referred us to a neurologist who is about 90 miles away who takes our insurance and has helped us and who is wonderful. Look on this site and others to try find information on doctors in your area who may be able to help. Call them and ask if they take your insurance. I would not give up.
  7. You can find lists of doctors sorted by state on this site under pinned threads, also you can go to pandasnetwork.org and they have a list, as well as Beth Maloneys site (she wrote a book called saving Sammy about her son who battled pandas). I hope you find someone who will help you. Others may chime in as well.
  8. I have noticed that in the past as well, with my son tics also increase when he is stressed or nervous, like when he has a test at school, or a presentation in front of a class. His tics also increased when he gets excited and energetic such as playing sports. Usually they drop back to a normal level when he calms down. His tics have been pretty good over the summer when stress levels were low, but now that school is starting they are starting to ramp up again. I have never noticed that heat increases tics though unless it is just associated with seasonal allergies.
  9. Good luck, I hope you find answers and treatment you are looking for. I hope that your parents will take the time to listen and educate themselfs about all of these infection related illnesses. We are just at the tip of the iceberg with figuring it all out. There is a wealth of knowledge and experience on this site and others like it. Please encourage them to read our posts and ask questions. Also visit websites listed under pinned threads for other trusted resources.
  10. Ds sometimes has pain after he urinates. It is intense but only lasts a couple of minutes. He doubles over in pain and can't walk when it happens. Not every time he urinates it is very sporadic. The pain sometimes on left side and sometimes on right side little lower than where female ovaries would be. We have spoken to numerous doctors including urologists and he has has ultrasounds done and urinalysis, everything. No answers just chalked-up to spasms. I don't know it this is the same area or not but if you find answers let me know. I would love to figure out what could be causing this.
  11. Yeah, my son had two smaller episodes with eye blinking and throat grumbling before the bigger episode hit. We have a great doctor and are controlling it all now with abx. I advise to try get him on a prophylactic dose of abx at least through the school year to protect him from getting any worse. I know how heartbreaking it is to watch and not be able to help.
  12. http://articles.mercola.com/sites/articles/archive/2013/10/10/melatonin.aspx I found this interesting and wanted to share. I have been giving my son .5 mg every day and have found it helpful.
  13. You can make a plan B. and even a plan C. Even if your DH does not want to agree or acknowledge it at least you would feel better about being prepared for all the what if's. Just tell him that you probably won't even have to use any alternative plans but if it makes you feel better and calm your nerves what can it hurt. Just look into all of your feesable options such as home school programs, smaller private school, tutoring, etc..... Check out all of your local resources and figure out what is available and at what cost you can afford. Talk to other moms and you may learn of things you did not even think of. Hopefully your daughter will continue to improve and you won't even think twice about any of this again but in order to save your sanity and possibly your marriage and family you have to do this. Good luck and take care of yourself.
  14. Did your doctor do a simple throat swab/culture to look for active infection? Strep can also hang out in other parts of the body but that would be a good place to at least start. If they did not then I would run to a clinic and just get a simple swab and culture. If there is active infection then that would be the easiest way to get some antibiotics and get started on some treatment. The standard 10 day dose is not nearly enough for most pandas kids but at least you could see if there would be any improvement at all while taking the abx. Also, make sure you ask for something stronger than amoxicillin. Amoxicillin does not work on some strains of strep and may not tell you anything. Ask for something like augmentin or Zithromax.
  15. You could also give probiotics it could not hurt at this point. It won't cure a c diff infection but could prevent things from getting worse?
  16. Sounds like it could be c diff. She should see a doctor and stop giving her any antibiotics. Most antibiotics can cause this but there are a few that can treat it. They may need to prescribe those. It is better to be safe than sorry. The blood and mucus and frequent diarreah are all symptoms.
  17. Maybe I have a little different take on this, and maybe it is because my ds is not a small child ( he is 14), But here is how I feel. He knows all about pandas and he understands he is a little different with tics and all, but I always try to make him feel better by telling him that almost everybody has something different about them. Some of it you see outwardly, some of it is emotional, etc..... Some poor children are very sick or hurt and in the hospital. I tell him the last thing he needs to worry about is what others say or do. But anyway, what I am trying to say is that, the more people use the term OCD in a casual way about themselfs, the more " normal" he feels. Why? Because almost everybody says they have some sort of OCD. He can also mention this now as "no big deal" and not feel embarrassed. If he says he is germaphobic because he doesn't drink after others then it is accepted more now because a lot of people admit to being germaphobic. I therefore welcome the idiotic comments from people who think they are OCD and say it proudly. This only helps my son to feel comfortable and accepted for who he is.. And I think who he is.... Is a wonderful, smart, sensitive, and caring child who happens to deal some tics, anxiety, OCD and more.
  18. Yes, this is definitely a good possibility. Was he accurately treated for all his strep infections? Many of us find that regular amoxicillin just is not strong enough to completely eradicate all of the strep and if it was not properly treated it can go into hiding, possibly in biofilms, etc.... You should start with your pediatrician to see how open he is to treating this with long term abx, tonsilectomy, etc... If not find a doctor who is. The sooner your son can start treatment the easier this will be to control.
  19. My sons symptoms, even when things were at their worst, completely disappear when he has a fever. You did not mention a fever, but that i thought I would throw that out there. It is almost as if when he is sick his immune system is so busy fighting whatever it is he has that it leaves his nervous system alone for a short time.
  20. I agree with quinine and LLM, the blood tests and swabs are very important. Along with the titer tests our pedi also ran a general streptozyme blood test as well. It is not specific, but can detect a current strep infection. Even if these come back negative other infections and viruses and live vaccines can also trigger pandas/pans symptoms. It is very important to beg, plead, and do whatever you can to get a trial of antibiotics. Do not settle for amoxicillin as many children including mine do not improve at all because it is resistant to a lot of strains of strep. Ask for either augmentin or Zithromax at treatment dose for as long as you can get it. It can't hurt and it may give you the answers you need if your daughters symptoms stop shortly after starting the abx. Wishing you the best. We have all been where you are so please feel welcome to post whatever you need on this forum. My son started with overnight tics also in 6 th grade. He also displayed more hyperactivity than usual and OCD and anxiety also got worse. Once you have a great doctor who will work with you things will get much easier to handle. Take care.
  21. Love hearing stories like yours. Thank you for sharing. Just one question for you... Did your dd have any type of professional therapy to help get past OCD and anxiety or did it just kind of go away on its own?
  22. I would not treat if there are no other symptoms. They may very well be just stretch marks. What part of the body are they located? My pandas son had strech marks on his butt. He is typical pandas and we are not in an area where Lyme is even considered. Not even one LLMD in our whole state. I took him to our dermatologist and he says they were typical stretch marks from growth spurt. They are now gone with no Lyme treatment only augmentin for pandas.
  23. I HAD to go get a medical exemption for my son. We live in one of only two states that does not allow for either a religious or philosophical exemption and the ONLY way out of the vaccines was by way of a legal medical exemption. Not only did I have to get a letter from our doctor, I then had to take it to some state official (who was not medically qualified to do the job). He then had to approve it and provide the school the necessary forms to allow my son to start school. This is also a small private school. The state lost the first approved copy then I had to re-file everything all over again... This was pure incompetence. Be thankful you live in a state you can make this choice yourself.
  24. You can purchase online strep tests and run them yourself. I know they are not always accurate, but if one did show positive you could march it on down to your GP office and show him. Maybe then he will write a prescription. I also agree to increase to treatment dose of abx for your daughter if you can.
  25. I agree, my son had overnight onset of tics also. I specifically remember the day and time it started. I took him in that day and Two rapid tests came back negative. I begged the dr. to run all the strep bloodwork and he reluctantly agreed although looking at me like I was CRAZY. He called me back days later saying it was positive for strep and saying he believed it was pandas. He had never treated pandas before in his 14 years of practice but at least he was open to it. He started treatment immediately then referred us to a pediatric neuro who is currently treating my son with long term abx. He still has flair ups and the anxiety is still bad at times but overall the tics are almost nonexistent. I believe you should listen to your mommy gut and try to get that baby of yours some more antibiotics. I am glad I listened to my gut and did not take no for an answer. Maybe the reason our pediatrician has never seen pandas before is because he never tested for it before. He tried to say my sons tics were stress related as well but I knew it had to be more than that.
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