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Everything posted by patric

  1. Hi, I am really sorry this is happening and I know how you feel. My 8 year old son, (before HD IVIg) had many intrusive thoughts and even would write notes about death. He also wanted to confess and say sorry repeatedly. It is difficult for me to even write about it, but I wanted to let you know that you are not alone... Has your child had th HD ivig? Or the LD? The HD worked for us. He is about at 90 percent, but after illness he will still have flares, but we haven't seen the severe intrusive thoughts like before. (fingers crossed as he is sick now.) I wish the best for you and your child! Sending prayers.
  2. Thank you Jag10! As it turns out, this was a timely post. My son ended up with a high fever of over 103 just this afternoon. I am dreading taking him to my skeptical pediatric dr. Last time I brought him in, he told me that his friends who are also doctors do not believe in pandas and unless I had info from a reputable site, he would not listen to me. Luckily I was "armed" with the white paper and showed it to him. I think he was either stunned or impressed because he said he would read it! Anyway, I really don't know my purpose for taking him in as I have already started him on the treatment dose, but am afraid not to have a "doctor" check him as his fever is so high. I am hoping I might get in to see his pandas doc, but then will have to pay and I am not sure he does typical sick visits that are not (yet) pandas symptoms. Does anyone have any advice as I am worried sick about it. Thanks!
  3. Hi Jag10 I have a question about your post. I was wondering if after you see the behaviors change in your child, do you start the treatment dose of abx yourself, or do you wait to consult with Dr. K? The reason I ask is that I used to always email him to verify that I should start the treatment dose when i see the tics and rage spike, but I am wondering if I can just make the decision myself to start the treatment dose which has always been a double dose of augmentin BID, or do I email for confirmation first? He takes 500 a day as prophylactic dose. I guess I am wondering what other parents do as I need reassurance. Also, how long does the treatment dose usually last? I guess I don't like the idea of being the doctor myself and want to know your and others thoughts about it? My ds9 weighs 72 pounds. Any feedback from anyone is appreciated!
  4. My pandas doc said no cleanings at all.
  5. Wow, I had no idea about floride! The article you posted was really eye opening. We recently started getting the hinkley floride water in the big jugs. I will request the non floride jugs. Thanks fixit! I really appreciate it!
  6. Hi fixit, You mentioned no flouride toothpaste? I hadn't heard of this. Does it cause problems? Also, we recently switched to water with flouride. I am wondering about that too. Any info. Appreciated! Thx
  7. I didn't think of the study, but you might want to check into that too. You can contact the NIH and see if you qualify. They will not take your child if any treatment has been started such as the steroid burst, so that is something to consider if you decide to go that route. It is free! Either way you will find answers and help. Good luck!
  8. Hi, I am not sure how dr K. Does his phone consults, but just wanted to give you some reassurance that you will be in good hands with Dr. K. One word of advice is to have your questions ready and written down for him as he is a wealth of information about pandas. We saw him in person and it might have been about 500$, and worth every penny as we spent a lot of time and tears going from one doctor to another, so I know how you feel! This was a year ago, so not sure what his prices are now. He is a bit quirky, and I think there is a method to this (just not sure what it is...ha ha!) Anyway Dr. K. Gave us our son back so I am very grateful to him. You can email him about the phone consult or call and ask his receptionist if no one chimes in about the process. Keep us posted. Don't give up! There is help and hope!
  9. Hey guys, You all bring up a lot of great points! Thanks for sharing your perspective as I hadn't thought of it that way! I liked and agreed with what Deedee said about "crowding my small brain with too much info" as that's what I was feeling late last night when reading all of this. Ha ha! Anyway, I also do want to thank everyone for making it feel safe to share a differing opinion. I still may have a somewhat differing opinion about this subject,, but I respect that all of you do too, and really you have some very valid feedback. Thank you for listening and responding in a positive way .I am happy we are able to share many different views constructively. Cyber hugs!
  10. Hi everyone, Is this info. strictly for Lyme? Sometimes it is confusing for me as there is a lot of info on Lyme and I am not sure what would apply for me being a pandas only parent. Please don't take this the wrong way as I do understand the need for some overlap and general info, but it has been getting very in depth and confusing for me. I just wonder if the in depth info wouldnt be better served on the Lyme board. I have been on the forum for quite some time and it is hard for me to decipher which is for pandas and which is for Lyme,so I can imagine how a new person feels. Again, I really hope I have not offended anyone. It is not my intention as everyone has been wonderful on the forum. Just trying to get some clarity. Thank you for understanding, and as one member said, "please don't throw rotten tomatoes at my post." ha ha!
  11. Oh, and you might want to read the book, Saving Sammy by Beth Maloney. I think you may get a lot of clarity and see lots of similarities in your stories. You aren't alone in this, and there is hope and help. The forum is wonderful and will get you on track with treatment.
  12. Hi, Sorry this is happening for your son. I have to agree with EAmom to contact Dr K. First of all, you can email him for free and he can direct you. Second, since your son's symptoms have gone on for so long, he can treat aggressively, which may be a necessity. Third, many people have had great success with dr K. Also, I don't think it is a matter of one doc being "better" than another. They are all amazing and our heroes, but some can be better for certain protocols. IMO, I would contact dr K. As this has gone on for you for too long and you need a dr. Who will be a specialist of pandas AND treat aggressively. I am not sure about the aspergers and how it may affect whether he will treat him, but it can't hurt to email him and find out. Also, he is probably the closest for you as he is out of Chicago. I can only speak from my own experience and knowledge and I do respect that others have found success with different techniques, treatments, and doctors. Wishing you the best! There is hope! Lots of us have seen our children go from about 10 percent functioning to 90percent and lead perfectly normal lives.
  13. One other suggestion is to ask the current teacher or principal for a recommendation for a teacher for the upcoming year. The teachers really have the inside scoop and know who the other good teachers are. In our case, the principal called me last week and said he will place my son with a really good teacher who can address his specific needs for next year. I always either call or meet with the principal at this time of year to request this as this is the time they are making next years class lists. Having the 504 or IEP helps in this regard, but even without it, a lot of principals are receptive and want to help (not all though, and sometimes you get a brick wall, but it's worth a try:)
  14. Dr. K website is webpediatrics.com. He has two offices and the phone numbers are on his website. Not sure which office you were meaning to call. Had great success with him! Good luck! I don't have dr. Bs, but I am sure someone else has it, or you can google it. He's great too!
  15. Hi Kim, I really feel for you as this can be a very uncertain time. For us (and others) amox doesn't work and it actually made things worse for our son and his tics came back more pronounced than before amox. Is it possible to try augmentin again? Have you seen a pandas doc (I can't remember your original post.) Best of luck and hang in there. It can get better with the right abx.
  16. Here is a helpful link. http://newideas.net/504-iep-adhd
  17. Sure! Each child will need different accommodations based on their needs and struggles, but here are some of the accommodations we together came up with for my 8 yo. Seating near the teacher (less distractions) Extra time to complete tasks Simplify complex directions (teacher works one on one with him when possible) Reduce homework Modify assignments Oral exams Extra time for exams/study guides Weekly progress reports Check out (to make sure he has everything) Ignore minor inappropriate behaviors Hand sanitizer available to all students Letter home if strep case Option to do work on computer (when handwriting is an issue) We are fortunate to have a very understanding teacher and principal so if a new need arises or something changes (as often does with pandas) we can call or email and come up with a solution, so there really are more accommodations that are done but not in writing as the need arises or isn't needed anymore. Good luck! We have been very happy with the 504 plan.
  18. Hi, As a former teacher myself, I would go right to the superintendent. They can override the princpal's decision. I am not sure you will get him on the IEP, but your child should certainly get the 504 plan which would put in place some accommodations that you will have input in. Our son is on the 504 plan for medical reasons (pandas) and it has helped quite a bit. We meet with the principal, teacher and psychologist periodically to address new concerns or modify the plan based on current needs. We just needed to bring his diagnosis from his pandas doc to be Eligible for the plan. You have rights with this, and in my opinion I would contact the superintendent. Best of luck! Keep us posted as I would like to see how it turns out for you.
  19. Hi Kim flow, I hate to be a downer, but amoxicillin actually made things worse for my son as it was almost as if he wasn't being treated at all with amoxicillin. Any chance of getting augmentin? Azith? I did this when my ped. Prescribed amoxicillin again after he had done so poorly with it in the past saying it was "standard protocol" for treating strep. Well I insisted on something stronger as I knew what a flair he had after being "non-treated" with the amox. Maybe you could call and ask...? IMHO amox. Doesn't work for my son or for myself for that matter. Wishing you the best!
  20. Thanks fighting mom! That is what I was thinking too!
  21. Also, with ibuprofen, is that to be given prophylacticly, or just in a flair? Which is best, Motrin or Advil, and also how much? Follow instructions on bottle and keep repeating doses? Thanks again!
  22. Hi everyone! Thank you for these helpful tips. We give ester C immune support daily 500mgs. Our pandas doc reccomended ester C, but I am not quite sure of the dosage. I do remember hearing that with vitamin C, if you take too much, it will eliminate with the urine and not damage the liver, but would like to know if that is really the case? Thanks a bunch!
  23. Hi , It is true that Dr. k. Is often out of the country, but in my experience he always emails back within 24 hours. We have emailed him several times and he always helps. I know you haven't seen him yet, so not sure if he will first want a phone consult, Skype, or appt in his office, but you are on the right track. I agree with trying to get abx in the meantime if possible. Please let us know what happens. My thoughts are with you and your family!
  24. No, Dr. k is dr. Kovacevic in hinsdale il, just outside Chicago. He is one of the leading pandas drs. Along with 3 or 4 others in the country. I believe his website is: web pediatrics.com Take a look. It has a lot of info on pandas. Good luck!
  25. I agree with kiera. Try and get a phone consult if you are having to wait so long. At least you may be able to get the abx until your appt comes up. Many on the forum have more than one pandas doc as they all have somewhat different protocols. It will help you to decide which one resonates for your child's needs. I know dr. K in Chicago does phone consults and I would check about dr. B and dr. T too. Best of luck!
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