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Ataloss12

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Everything posted by Ataloss12

  1. Hello everyone!! We decided to get an Immunologist on board to check for potential triggers, so we have an appt with Dr. B in two weeks. I have received information on labs to request, but thought I would post to see if anyone else can add suggestions? A little bit of background - DD is 5, here are the deficiencies that showed up on Dr. T labs: VIT D, IgA, IgG2, IgG3, IgG4 were ALL low, in addition to low pneumoccocal titers, abnormal P41 Band on WBlot. The only remaining PANDAS symptom that we are dealing with right now is an occassional intrusive thought (maybe 1-2 per week), and we have had other issues such as: weight gain, vomiting, small bumps all over body (like ezcema). I feel like we might have some allergy issues going on, in addition to PANDAS. Please forgive my ignorance, my head is still spinning from all of this. If any of the forum experts can chime in and tell me what I should request, I would appreciate it! Thanks and God Bless............
  2. Well my child's case is extreme and not "typical". She does have immune deficiency as well. It could be that she was left untreated for so long- IDK. I do hear about some children being cured by IVIG, we seem to need more than that. Sorry to hear that. According to our daughter's bloodwork, she is immune deficient as well. We didn't know until Dr. T ran bloodwork to detect PANDAS. We saw Dr. K and he didn't seem to think there was anything to worry about regarding the immune issues and stated it was "good" in our case because insurance would cover the IVIG if we proceeded. We will be going to see Dr. B next month to address any potential allergy/immune issues or triggers.
  3. Thank you for your response. You still have issues with flares, even after IVIG?? Dr. K told me that IVIG "was the cure". Is this dependant on how long the child went without treatment for PANDAS? If IVIG isn't 100% going to cure it, I am not sure it a risk worth taking in our case. We do have an appointment with Dr. B to get him on board as well, making him the third PANDAS specialist that we have been dealing with.
  4. Hello everyone!! I thought we were out of the woods until this Tuesday. My DD5 was diagnosed with PANDAS and started on Augmentin 400mg bid and was on it for about 40 days. Dr. K told us to finish her last round and wait for a few weeks to see where we were. We stopped the last round and she didn't have ANY intrusive thoughts for well over 4-5wks!! Then on Tuesday, she complained of a sore throat (was very red), so I started her on another round of abx that afternoon. Lastnight, she told us that she had a "bad thought" and stated she thought they were coming back. My question is this: Should we continue abx and see where she goes with it, or just jump right in with IVIG? Dr. K feels like she has been dealing with PANDAS since a toddler, but we really noticed it March 5, 2012. She didn't get started on abx until around the second week of May. Can anyone chime in and assist me with this decision?? I am terrified of possible IVIG reactions.........
  5. Totally off topic, and you didn't ask, but have you ruled out metabolic disorders as part of the puzzle? Our doc kept saying my son's symptoms and behaviours sounded so much like a metabolic disorder, except that he was not vomitting. Your comments about vomitting just made me recall that. FWIW She had the thyroid panels done, but nothing more than that for a metabolic panel. I will add that to my list of testing that I want done to rule out any underlying conditions. Dr. K said that he believes our daughter developed PANDAS as a toddler and that the vomiting would be a symptom. We have an appointment with Dr. B to have him look into the issues that showed up on her bloodwork and I will address the metabolic issue with him to see if he can rule that out or refer us to a doc that will look into it. Thank you
  6. [Who are your PANDAS docs? Sorry, I must have overlooked your previous post regarding MTHFR. We are being treated by both Dr. T and Dr. K. We have never had the MTHFR testing done and wondering if we should request it.
  7. Hello everyone! Please excuse my ignorance, however I have seen alot of topics regarding MTHFR and really would like someone to comment on this matter in layman terms. Is there any correlation with PANDAS? Should one have their child tested for it? The only thing that I know that is definite in our situation is our DD5 has been officially diagnosed by 2 PANDAS docs, had immune deficiencies show up on labwork as well as low Vit D levels. She was born premature, was colicky as a baby, had frequent allergy/sinus/colds/ear infections throughout her life and unexplained vomiting (since a baby) and weight gain (within the past 2 years) and ezcema. One of the PANDAS docs thinks that the vomiting/weight gain are symptoms related to PANDAS, a GI Specialist thinks that it is an acid reflux issue or Cyclic Vomiting Syndrome. We are taking her to Dr. B, in August, to see if there are any underlying allergy/immune issues that need to be addressed and now this MTHFR has me wondering if that would fit it somewhere. If anyone could chime in, I would greatly appreciate information on it. Thanks
  8. I am posting this in desperation.....our Ped. is NOT on board. He thinks that we aren't dealing with PANDAS because we didn't have a positive strep connection and essentially got our diagnosis/treatment via email/phone consultation. All bloodwork and symptoms are consistent with PANDAS and we have already been dx by a PANDAS Specialist. Our pediatrician thinks we could have a psych issue (schizophrenic or bipolar). I am not sure how that is a possibility at the age of 5 and her symptoms were sudden and have slowly gotten better. He wants to refer us to a Children's Hospital to have a "team" evaluate her for everything from psych, GI, Immunology, Infectious Disease, etc. Almost all of her symptoms have gotten better, esp. while on abx, steroids, however he is persisting to get this work up done. I feel that it is NOT necessary as we are almost back to her normal self. We are also going to another PANDAS specialist next week for a second opinion. My question to everyone is - can we get in "trouble" for not following our pediatricians suggestions/referral? Is this a State by State issue? I am distressed by all of this and not sure what to do. If ANYONE could give me some advice, I would really appreciate it. Thanks and God Bless......
  9. Can anyone recommend a doctor that is well versed in OCD/PANDAS with children in Indiana or Illinois? Please PM me. Thank you!!
  10. Has Dr. B mentioned what the IgG Lyme band 41 is all about? Our daughter had that too. It showed present, abnormal non specific. We will continue to keep your family in our prayers.....
  11. Are you currently on here, too? LOL

  12. Has anyone's child experienced a low grade fever while on the Prednisone Steroid Burst?
  13. Hi. Please let me know what Dr. T has to say about your child. Have you done bloodwork yet? Please keep in touch. You guys are in my prayers.....

  14. How much does your child weigh if the dosage is 500mg/day of tryptophan? Thanks!! :)

  15. Thank you for your response. What home remedy worked for the intrusive thoughts? We just started antibiotics a few days ago, but we haven't seen much changes in them yet :(

  16. Thank you for your response. What home remedy worked for the intrusive thoughts? We just started antibiotics a few days ago, but we haven't seen much changes in them yet :(

  17. Thank you both! I found another mother that was honest about what her child went through. It has helped me a little, knowing that we are not alone in this. Would you guys be opposed to a phone call from me?
  18. Hi. I noticed that you too, have a DD5. If you don't mind me asking, what is your story? I am having a really hard time dealing with all of this and am trying to find people that are dealing with the same issues as us. Thank you!

  19. Hi. I noticed that you too, have a DD5. If you don't mind me asking, what is your story? I am having a really hard time dealing with all of this and am trying to find people that are dealing with the same issues as us. Thank you!

  20. Anyone have any experience/advice on how to handle the intrusive thoughts that can present with PANDAS? My DD5 has improved since initial onset and we recently started antibiotics, but I heard these thoughts are the last to leave. Has anyone elses children had these issues?
  21. Hi. I read a post of yours regarding your child and intrusive thought. Our daughter is going through the same thing and I wondered if you could offer any advice? I am at a loss and distrubed as to why she is thinking things of that nature. She is home with me 24/7 and isn't exposed to things of that nature. Any suggestions would be appreciated. We just started abx.... Thanks :)

  22. Hi. I read a post of yours regarding your child and intrusive thought. Our daughter is going through the same thing and I wondered if you could offer any advice? I am at a loss and distrubed as to why she is thinking things of that nature. She is home with me 24/7 and isn't exposed to things of that nature. Any suggestions would be appreciated. We just started abx.... Thanks :)

  23. Please excuse my ignorance, but I am confused. Will the OCD symptoms still be an issue, even after antibiotic treatment? Our DD5 just started Augmentin today and takes a total of 800 mg daily for 10 days. Alot of her symptoms got better before starting the antibiotics, but we are still dealing with the OCD stuff I sent the doctor an email addressing my questions, as hubby spoke to him during the phone consult and didn't think to ask these things. Can anyone chime in??
  24. I live the Southern Indiana, about 20 minutes from Louisville,KY. My dd7 had 1 exacerbation in September of 2010. We caught it quickly and is doing great almost 2 years later! PM me if you get a chance. We live in Southern Indiana, as well! Our 5 year old daughter was just recently diagnosed by Dr. Trifiletti. We have a consult with him tomorrow to discuss treatment plans. I am hoping that we caught it early enough, as her onset was two months ago. I will send you a message
  25. My daughter has recently been diagnosed with PANDAS. We live in Indiana and I am curious as to how many forum members live in Indiana? Perhaps we could exchange contact information, as a form of additional support! I am new to this devastating disease and could use support, advice
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