Jump to content
ACN Latitudes Forums


  • Posts

  • Joined

  • Last visited

Everything posted by meaghan240

  1. I emailed them too, but my son is only 2.5 ... I know it says 4 though and I know they need to stay in the guidelines, but worst case is they say no Too bad because he has all the other requirements..
  2. He did get back to me this morning and I set up another phone consult for Monday but he wants treatment started asap. I am also flying to dr. B in conneticut for a consult in December, so I'm hoping between Dr. T and Dr. B we can figure out the best plan for our son. Also, I use lab Corp and they have never sent me labs before but I like that you can tell them and thy will send you a set too. Little red dis you have your phone consult ????
  3. Sorry for all the errors In spelling I'm on my phone so it's not auto correcting
  4. I was on Herr last week for my 2 year old son. I contacted lots if doctors, but Dr. T seemed the best and emailed me right away and agreed with some bloodwork (done previously) and his history that he had PANDAS but wanted more bloodwork. I got all the bloodwork done and then emailed him a couple days later to tell him my son was starting with the tics again and he responded right away and got the bloodwork that was done and sent it to me and said he would call me at the end of the week with all the bloodwork. I emailed him in the mean time to tell him we started antibiotics but he has not responded. It's been almost a week and I have emailed him a few times with no response ???? He went from emailing within an hour to now going a week ??? Today I emailed him to ask him for my sons bloodwork and I appreciate all he's done but if he doesn't want to help us I can take his bloodwork to someone else. Again no answer ??? All I ever hear is how great he is and I thought he was amazing and the first Dr to hear me and now I'm so confused ???? I really don't want my son to go through all the bloodwork again and I don't know how to get it ????
  5. Thank you so much. Who is Dr. B ??? We have been talking to Dr. T and he's been wonderful and we already have an immunologist here (Colorado) and she has NO clue what PANDAS Is. She has never heard of it before. Dr. Cunningham told me to get in contact with Dr. Latimer. I don't have a problem traveling, but I can't go back and forth all the time. I need a dr. Who can work with my pediatrician or our immunologist.. We have bc/bs ppo also, but it seems all the PANDAS drs don't accept insurance ? I don't know where you live or what your finances and insurance are like, but in your case I would recommend Dr. B. Someone did that for me and it made all the difference because he is an immunologist and really understands kids with chronic infection, allergies, and sinusitis. Your son is young and you have that on your side. His PANDAS will not be cured, but you can manage it. Please PM me if I can help you in any way.
  6. Thank you so much for the responses.. Dr. K in Chicago stated, "You can not diagnose in 2 year olds" and basically he was unwilling to help me .. I knew/know something is wrong with him, I am home with him everyday and he is my 3rd, so I am well aware of terrilbe 2's, 3's, 4', and now 6's and 9's and I was not willing to accept anymore this is normal. I forgot about his major OCD at times. The other day (the day before the blinking started) he spent all day lining up his trucks and cars in a perfect line, bumper to bumper. I videotaped him and I also videotaped his blinking .. I know kids line up toys, but this was the same pattern for hourse on end. Also, in the beginning he use to sleep from 7pm-7am and now we fight with him to go to bed and naps and he is up between 4:30am-5:30am every morning. There are so many days I am ready to lose my mind and NO ONE understands. All my friends think I am crazy and he is 2. It is easy to say that when I keep him inside and away from everyboydy because he has these massive breakdowns. It is said when his bloodwork came back "not all normal" I was excited..Excited to have an answer and scared that this is not truly cureable. Thank you so much for all the feedback Also, airial, after my sons Tonsilictomy is when all his symptoms came out, BUT I think because he was finally off meds for the first time in awhile. I wish you luck with it . My daughter never got sick again after hers, but of course not my son Dut, I am glad to see someone else whos child had c diff (not glad for your child). I have not read about anyone else having this. My pediatrician is not a PANDAS dr and we live in Colorado and I am willing to go to Jersey for Dr. T if need be, but for now our pediatrician is willing to research it and is starting to believe he could have it and he would be her first patient. So she is anxious to hear what goes on too and hopefully willing to work with Dr. T on treatments. I keep seeing IVIG and wondering if that is the best way for our son to try to get him off antibiotics for a little bit ???? Has anyone had experience wtih IVIG ????
  7. Hi, I am new to this forum, but I have a 2 year old that has been on antibiotics most of his 2 years for ear infections/thoart infections/sinus infections etc. He has had 2 sets of tubes/adenoids removed and finally his tonisls out in July 11'. He was off antibiotics starting in August and that is when he went from a "normal" 2 year old boy to this psychotic child. We kept chalking everything up to "terrible 2's" but he was getting much worse, temper tantrums went on for days and would not stop, he was SO clingy to me going anywhere, he was not happy ever anymore and finally I had to stop bringing him out in public for fear of a melt down. Finally, 4 weeks ago he started doing this blinking involuntarly and after 5 days of that I brought him to our pediatrician who said she did see another child do this and have strep. He had NO symptoms, but was positive. We started antibiotics and I went home and googled this and found PANDAS which explained everything. By day 7 of antibiotics we started seeing the light back in our son. He was playing and happy again and then day 9 of antibiotics he went back down hill with his croup infection. At this point I contacted Dr. K in Chicago (which is where we are from) he was incredibly errogant and not helpful what so ever, so I researched more and have been working with Dr. T, who is AMAZING and a lifesaver. Alos, Dr. Cunningham has been great to work with. I was confident he had PANDAS and just wanted answers. Dr. T sent us for tons of bloodwork and so far he has no basophils, low IgE, IgA and was Positive for band 41 of the western blot Igg his ferritin is very low and so is his Vitamin D. Dr. T is waiting on a bunch more tests to come back before calling me back, but my son started blinking again 2 days ago and tested negative for strep, but our pediatrician is starting to believe he has PANDAS also so she put him back on antibiotics till we talk to Dr. T.. My son has already had C. Diff 2 times from antibiotics so I am not sure if long term antibiotic use is good for us and he has been on antibiotics for so long already I would hate to keep him on for so long. I guess my question is, did anyone ever have a child this young diagnosed ? The blood work that came back already, does anyone else have the same looking bloodwork ? Since being on antibiotics, his behavior has gone back (till this past day when he started blinking again) to normal and also he started talking since he was nto talking at all before and he just is overall back with now "normal" 2 year old stuff.. Anyone with any insight on what we are up against and what has worked with kids so young would be helpful.. Thank you,
  • Create New...