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Everything posted by BoyIowa

  1. How do I handle this? Trying to decide if I take my dd to Florida for the PANS study as we believe she has PANS from Myco P. Now we find out she is positive for Lyme. We are already struggling through this with our ds with PANDAS and Lyme. Now I believe that both my dh and I need to be tested. I guess when it rains, it pours. Please help me find the strength to stay strong through all of this and to make the right decisions.
  2. Can you tell me where you had PEX done? Our ds doctor seemed willing to order it, but I know he is not an expert. Do you think it would be effective for Lyme too?
  3. Found alligent flies to moline, rockford, cedar rapids, peoria. Timing might not be right for first visit (3 hours), but may work great for subsequent visits that are shorter. Online says airport to Rothman center is 1/2 hour. Anyone know fastest and best way to get there, ie taxi, bus, train?
  4. We did mention PEX the last time we were at doctor with ds. Will ask again next week when ds sees doctor. I know dd Ped will take advice from other doctors for treatment. I have to find a way to get there. I trully believe that it will benefit both my kids in the long run. Almost have my dh convinced that it is the right thing to do. If we go there and I am wrong about the PANS, we don't have to go back. If we are right, they will give us the meds there and we have to be prepared to go back in 2 weeks. Can get direct flight with Allegiant really cheap, but then can't get direct back for several days. I will check another airport. Anyone stay at the Ronald McDonald house for the night?
  5. Ds is on antibiotics and various vitamins and supplements for support and detox. Our insurance denied IVIG (Cigna) and denied appeal. Doctor K diagnosed ds; would be nice to see anoher 'specialist' for another point of view.
  6. Just got a call back from the Rothman Center Antibiotic Study. Though my dd has not been formally diagnosed with PANS, she meets the criteria to participate in the study - sudden onset of OCD, urinary frequency, night terrors, raging/throwing fits, anxiety, crying, bad thoughts, saying the same thing over and over again, positive active Myco P infection (on second round of abx for)...... Currently playing 'test for infection and treat active infection' with her ped. Can I afford the multiple flights to Florida? The time off work? The time away from home? One time reimbursement of $275. Can my marriage handle this? My husband is not a 100% believer in this. He thinks all doctors are quacks and won't go to one himself unless he feels like he is dying or I can convince him to go. This is not new stuff to this family - My ds (9) was diagnosed with PANDAS and Lyme just about this time a year ago. DS has his really good days and his really bad days. We are treating, but we are not seeing that light at the end of the tunnel. We are not seeing an expert with my ds. How can I pass up my dd seeing Dr. Murphy?
  7. We found extremely high hhv6 with additional Lyme testing (over 3 times normal). I don't remember what doc said about it, but we are treating the Lyme with Aug XR and Biaxin XL and flagyl. Should we be doing something else for the hhv6? We can't seem to combat the tics. Btw just found positive Myco p infection in dd. Contacted study, haven't heard back yet. Will try again in Monday.
  8. We have a doctor suggest that we see another doctor that uses this therapy (autistic doctor). The doctor was several hours away and out of network. I also believe that the treatment was around $1500 each time. I have a family member that needed a chamber for a surgery mishap - septic shock. She had to go daily and it worked great for her. We don't have the $ for this or the IVIG that our insurance denied. I am sure our insurance would deny this too. I would also live to know if anyone tried for a PANS child.
  9. I feel your pain. My dh has an explanation for every PANS/PANDAS symptom. Hang in there, our kids need us. ; )
  10. Does anyone know if there is reimbursement and/or assistance with travel costs?
  11. Can anyone share what kind/brand of chlorella they use?
  12. Our ds had a similar experience where the Zith really helped at first bring the tics down substantially, but never completely gone. We are fighting Lyme too and have had the ticcing for about 2 years (only been treating 1 year-stupid dictors). Our regime seems to knock most everything down, but not the tics completely yet. I am very hopeful because they have gone down substantially since we started and I have read that tics are the last to go. Our ds doctor always says to me, 'it's not a marathon, be patient, his body needs time to heal'. : )
  13. My ds who is 8 has been taking pills larger that Zith for several months now. My dh can't take any pill without choking. The amount of Zith that my ds took when on Zith was greater than I get when I get a sinus infection. I was told that it is not recommended to split pills in half as there is no guarantee that there is an even distribution of medicine in both sides of the pill.
  14. On our way to LLMD. Have been on Augmentin XR and Biaxin XL for awhile now. I think we hit the as good as it gets. Would it be beneficial to change abx up a bit?
  15. Aren't there only a few locations in the country that do PEX for these kids? I'm bracing for an IVIG appeal denial - I know they cover PeX.
  16. On our way to LLMD. Have been on Augmentin XR and Biaxin XL for awhile now. I think we hit the as good as it gets. Would it be beneficial to change abx up a bit?
  17. Unfortunately we don't have many peds or Ped offices where we live. I sat down with my short list and started making phone calls. I asked, "do you treat kids with PANDAS?" if the office didn't even know what it was I moved on. Then I found one that had seen another PANDAS child and was willing to see our ds. However, I am not really sure how 'on board' he is at times. I think he is not comfortable that he is not the lead in my ds health, but frankly he does not know enough to be. I only go to him for general stuff. Last time was for wart on foot. I see him more with my dd.
  18. I read that IVIG is more expensive due to the blood product, but that was assuming that the PEX was done on an out patient basis. Some stupid analysis that I found to help insurance companies deny IVIG. It also talked about a short supply of IVIG.
  19. Thank you all for the advice. I discussed with the family and I think that is the way that we are choosing to go. I found a great website that sealed the deal for me. Vaccines and Religion edited: I know it talks about Florida, not where we live, but it has a great message.
  20. We are not currently seeing a big name PANDAS doc. My son is seeing a DAN and a LLMD. My daughter just sees a regular ped. She does not have PANS, but has tendencies. I worry that vaccines could push her across the line. I found the form that I can use for an exemption. There is 2 parts to choose from. The top part is for a medical exemption to be signed by a physician. The bottom portion is for religious exemption and is only valid when notarized. The religious states that the "immunization conflicts with a genuine and sincere religious belief and that the belief is in fact religious, and not based on philosophical, scientific, moral, personal, or medical opposition to immunizations." I pray to God every day that my dd will not get sick like my ds. Why else wouldn't I want the immunization if not for a scientific reason?!? Yes, please give my child formaldehyde and aluminum injected into her body!! Ughhh! Both sections have a disclaimer that states "exemptions do not apply in times of emergency or epidemic as determined by the state board of health and declared by the director of public health". It still is not in our hands.
  21. Unfortunately my state does not offer the personal exemption. Anyone know how to do the religious exemption?
  22. The only 2 that she hasn't had for kindergarten are the DTap and Polio. Are there titers for them? I did ask the ped if there is are seperate shots for the diphtheria, tetanus, and pertussis and was told 'no, it is a combination shot.' How do I get out of it and still get her into school? I think her ped is pro-vaccines.
  23. I would first like to thank everyone that posts on this site for the wonderfully helpful information. I don't post very often, been am often a 'stalker' to get help and ideas for my ds. I would like to thank thenmama especially for the great start to our appeal letter. It took me almost 2 weeks to finalize and just got it sent off (certified mail signature receipt) last week. We are keeping our fingers cross, but still pushing forward with abx, vitamins and supplements. I will let you know the outcome of the appeal. I have a question for all the smart parents out there about VACCINES. My dd will be going into kindergarten this year and she is due for a couple of vaccines before attending school and I am terrified. Should I try and avoid them? She does not appear to have PANS at this time, but like most of us here we see tendencies in many kids. As you may recall, my daughter had 6 strep infections in 4 months a year ago. She had 2 sets of tubes for chronic ear infections and had her T& A out. She had pneumonia in Sept and bronchitis in Oct. She is in a daycare that has infections running rampant all year long. Either it is strep or staph or RSV or Croup or Fifth’s Disease; you get the picture. When dd is not feeling well she can be extremely defiant and clingy; just not herself. She is doing pretty well now except the seasonal allergies are kicking in (just found out last year that she has some allergies). We have not seen any major sickness since the bronchitis (knock on wood). Her last vaccinations were given in July of last year (MMR, Varicella and Hep-A). My dh took her to the doc for and I didn’t know that they were going to give her any at that time. I was kinda ticked at my dh, but very angry at the doc because it was not something previously discussed. She was at the doc for an ear infection two weeks before. Anyway, I’m digressing. She is due for a DTap and a Polio. Can I avoid these? Can we test to see if she has immunity to these through titers? I am scared because my ds, who has PANDAS that is complicated with Lyme, became ill @ 6 1/2. Could his ‘trigger’ or his 'perfect storm' have been his prekindergarten shots and that 4 month undiagnosed strep and the ticks that he had on him that summer and the autoimmunity in the family? I don't know, but I am not a gambler and I don't want to gamble with my dd. I have seen many vaccine schedules and have a couple of books to read, but didn’t get to the vaccine scheduling parts yet. Any advice/help would be appreciated.
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