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Everything posted by memom

  1. BCBS of Illinois states they do not cover ivig for Pandas diagnosis. We have been going for Variable Immune Deficiency but have been turned down and appealed now 3 times. In addition to the labwork to support the diagnosis, they have required evidence of serious, difficult to treat pattern of infections. We have gotten the IVIG and expect we will have to pay out of pocket for it if we fail in our attempts.
  2. We have BCBS with Caremark for the medication coverage. They have not at all balked with the Augmentin XR. We do pay a higher copay though. DD18 has not found it to be any different in terms of benefit as compared to Zith, or Augmentin 500mg or 875mg. On the other hand, our IVIG done last week will likely not be covered even as we are going through the appeals process. We are using Variable immune deficiency as she failed the pneumo titers but now we have to prove a history of hard to treat serious infections before they will cover. They do not cover for Pandas diagnosis, I don't know if this helps. Ellie
  3. cam kinase 156 antilysoganglioside 640 80-320 antitubulin 2000250-1000 antidopamine 1 2000500-2000 antidopamine 2 2000-16000
  4. I want to also send thanks. It is an amazing amount of work for all. I would also like to hear about Dr. Cunningham's reaction when she hears about the money. It is such a testiment to how despirate we are to get our kids properly diagnosed and treated. Though most of us have not done the amount of work you have done, each person who votes daily (for all the other causes as well), and spreads the word so others will vote are pieces of the success. Step by step, stone by stone, we will find cures for our kids. memom Ellie
  5. I agree. Happy Father's day to all of the Dad's out there. Alex, if you are reading this, special safe one for you. Didn't realize you were there. Safe journey home please. Ellie
  6. Thank you all for your kind words. I guess today is a new day and I have more energy to continue the fight. I am greatful for the support and wisdom in this board. Ellie
  7. I am getting tired. I feel more and more like a salmon loosing the battle to get upstream. The rushing constant river of Pandas has been pushing me further and further down. I have been trying to go against the tide for years now. Pandas is winning. We have tried everything everyone has suggested, antibiotics, ssri's, steroids, surgery, dietary supplements, nutritional changes, and a year of cbt. Now the final step after many failures and partial successes, is IVIG (per Dr. K. and Dr. B.). I got the letter from the BCBS appeals today refusing coverage again. I have not yet been able to speak to Dr. B.'s office (closed today). I just want to cry. At 17 years old (18 next month), we may need more than one dose with some suggestion of limited likelyhood of cure/remission. We repeated her pneumotiter titers and she only passed 4 of the 23 serotypes yet because she has only had chronic asthma, allergies, throat infections and respiratory infections, there is not enough efidence to cover IVIG. They were very clear that IVIG is not approved for PANDAS as there is no proof of effectiveness. So now, where to go. I have 2 kids struggling right now. My heart is broken. My spirit is spent. My fight is weak. I am tired.......Can I afford maybe as much at $30,000 for 2 rounds of IVIG for only one of my 2 struggling kids.....I don't have the answer right now. I know I am not alone. There are so many of us in the same place. I am jealous for those families like Sammy's where it was as simple as antibiotics. Two years ago I was so hopeful. I am now loosing hope that I will ever have a normal family again, that my kids will feel good again and be able to live a normal young adult life. The stress on my 28 year marriage is hard. The burdon of being the only adult to hold the torch for these kids has become overwhelming. Sorry for the downer words, but there was no more room for these feelings inside, I needed to let them out. memom
  8. Let's bump this to as a reminder to vote. Ellie
  9. Deby, I'll take a shot at this answer. There are two reasons for short term steroids. One is to decrease inflammation of the basal ganglia in the brain caused by the auto antibodies the immune system is producing. The other is to help predict if immune therapy (IVIG) will likely be effective treatment (short burst) Once it is thought that a person is suffering from Pandas, the goal is to rid the body of infection (known or hidden) in hopes the body will stop making auto antibodies (antibodies against self, in the case of Pandas, against the basal ganglia in the brain), then close the blood brain barrier so antibodies can't get to the basal ganglia, and finally to decrease inflammation. There are a few kids that have been effectively treated with antibiotics (usually long term), and a month of steroids allowing the child to return to baseline. In our case, the steroids showed us with certainty that we were dealing with an auto immune disorder, not a mental health disorder as my daughters symptoms dramatically improved on the steroids (unfortunately to return as soon as the meds were tapered). I hope this helps.
  10. Thinking of you. One more hour to go. Ellie
  11. My daughters symptoms ramp with bad allergy days. The immunologist we see believes that kids with bad allergies increase their chances of repeated infections (respiratory) because of the impact on those normal infection fighting tissues being disabled from inflammation. This means strep among infections, not just colds. Ellie
  12. Hi Shirley, I don't know about what Dr. Lin prescribes but can tell you that my daughter has a lot of experience with the steroid burst. During earlier childhood she sometimes needed to take it for asthma (liquid prelone, not great taste). If it is a 5 day burst, not much for side effects. The liquid doesn't taste that great. She has also taken the pills for a month on two occassions starting with high dose and tapering over the month till off by day 30. Some of the side effects include increased appetite with some facial swelling and weight gain that were temporary. He pandas symptoms improved with the first trial around day 7-10. It was pretty dramatic. In fact, they got worse on day 4 but for only 12 hours or so then improvement. As her dose decreased her symptoms returned. Some of those kids who have tics have noted an increase in symptoms for a period of time I believe. Hope that helps, Ellie
  13. Hey Grace, I want to welcome you as well. Many of us on this site can relate to your story with having multiple kids with special needs. I have two with Pandas now suspected for many years. 17yo and 20yo. Out of pocket costs are huge and difficult to sustain. You will find good counsel on this board. Welcome, but sorry you are here. Ellie
  14. Hmmm......Timing is interesting. I live here in Maine (Portland area) and yesterday there was a pretty large front page article on Beth and Sammy and Pandas in the Portland Press Harold (biggest paper in the state). Her book is pictured as are both Beth and Sammy. I reread it to see if I could find mention of her website but found none. It mentioned the episode of mystery diagnosis coming up June 14th and that she will be speaking at the International OCD Foundation conference in July. Ellie
  15. Vicki, So let me get this strait. Stop voting for Tacoma even if we've been leaving messages? Add Warriers. Done. Have left message re votes. Ellie
  16. I guess it really depends on how far you are traveling from. We had a 5 hour drive each way and so I asked if we could get labwork done at a local lab and have the results for our first appointment. If you are close, I would actually suggest just showing up with a good history of your childs healthand vaccine history, and allow him to make decisions at that time what he will want for lab draw. I was also in a position where I knew we were dealing with Pandas already so really wanted his insight around the immunologic piece of our puzzle given my dd17 health and her response to the first steps for treatment. The labwork takes a while to come back as for most labs it is what is termed a send out (local labs send to Mayo clinic in another state to be processed). You would not have time to get the labwork back if your appointment is so soon. Just go and enjoy the visit. He will direct you. Ellie memom
  17. I have a subscription to up to date and have for years. When my daughter had her first severe exacerbation 2 years ago (milder symptoms of OCD for many years prior to 2008 but still functional and not diagnosed), and the Psychiatrist who evaluated her mentioned Pandas, I went to Up To Date for information. Because the Psychiatrist and our Pediatrician didn't know how to treat it, I trusted UTD's suggested treatment plan (and the NIH) of mental health approach. Since it had been 9 months since her last documented strep infection and that was treated, the physicians thought no need to treat with antibiotics (despite continued elevated ASO titers) and I went along. We lost her entire Junior year of High School with severe debilitating symptoms despite Zoloft 250mg daily (maximum adult dose) and weekly CBT. Never in my life have I ever had a patient on that much Zoloft! At the end of her Junior year she got yet again another Strep infection and I watched her symptoms ramp up even more! It was at that moment that I took matters into my own hands and went into Pandas treatment mode. We are light years ahead of where we were last year at this time after surgery, steroids twice for a total of 2 months and antibiotics (and a few failed nutritional and supplementation approaches), but now have foundational dysfunction that I am hoping to rid with IVIG. I felt angry with the time lost because of UTD. Unfortunately most of the physicians in practice use this tool (and FPMD's), and are going straight to the treatment suggestion portion of the article suggesting mental health approach. I think of all the things that are setbacks for our kids getting adequate treatment are the NIH website and Up to Date. My two cents for what it's worth. Ellie memom
  18. I will continue to vote and do my best to get more (just a few this month besides myself). I don't mind logging in votes under others emails but it is the comments for the others that take so dang long. I got frozen out today in trying to make comments. I think we should give it all we have as we should get going quickly. Ellie
  19. Dear Nancy, I am sorry to hear about your ordeal. Here's wishing you and your daughter a beginning healing. Ellie
  20. Hi Robin, I'm sorry you are here and your son is struggling. You will find support and wisdom with these wonderful parents. My first thought, have you had your son tested with the Cunningham tests? For me, that was the first validation that we were on the right track with the diagnosis. Since at this point it is a clinical diagnosis and not laboratory diagnosis, it is helpful to see if our kids fit into what looks like other Pandas Kids in terms of antineuronal antibodies and Cam Kinase II testing. Information is all over this board about this testing. It costs $400.00 and will not be covered by insurance but in my mind, well worth getting the information if you are at all questioning the diagnosis (and therefore treatment options that are designed to help the autoimmune aspect of this disorder). Second, don't give up on your son just because he is 15yo. There are other teens on this forum that have gotten remission of most, if not all of their symptoms. My dd17 exploded with symptoms about 2 years ago after a series of strep infections, but in hindsight had lesser symptoms for years prior to her collapse. It has been a particularly rugged 2 years, but we have gotten to about 75% improvement. We lost the first year with CBT (counselling) and SSRI's with no improvement. The second year we have attacked it with correct diagnosis (Cunningham testing), antibiotics (long term with trying different treatment options), surgery (tonsillar abscess) and two bursts of month long steriods. The surgery and the steroids are what has worked the best for her (she is one of those kids with chronic sore throats for years, many of other kids with Pandas are not. Surgery not suggested for most). The steroids make a huge difference, but once she is weaning, her symptoms come back. Two physicians have suggested it was time for IVIG, but so far, insurance is not comming through. Then the hard decision if we can pay out of pocket for maybe two treatments. Good luck, Keep us updated. Ellie
  21. You are not alone. You put into words many of the feelings I have experienced over the past years. I find that I pick and choose who I tell what. I find that I make excuses about why my daughter won't be going to college next year. The next question is alway's, "Well then, what WILL she be doing?" To that I say, "trying to heal". Now with initial insurance refusal for IVIG, it kind of feels like the health care system is also poopooing my daughters illness. No different than many others on this forum. Know that you are not crazy, nor overprotective. Just hoping to get to normal. Don't stop fighting the fight. Ellie
  22. Add one more to the list. I think we are one big family! Nice to have the understanding on this board. Ellie
  23. Hi Amy, I am so sorry you are experiencing a relapse. It strikes fear in most parents when the tell tale signs resurface. It is unclear to me by your post if your dd is currently on antibiotics or not. I think that if she has in the past been titer normal despite culture positive strep, I would not consider titers to try and confirm current strep. Given sore throat, I would test there first. Despite the results, I would absolutely request Azith or Augmentin for at least a month. In the meantime I would consider testing everyone in the house to make sure noone is a carrier (blood titers and throat cultures). You are fortunate to have seen such good results on the Clinda, not needing steroids, or IVIG. If you don't get improvement I would consider a call to Dr. Latimer. I would also take a picture of the rash and bumps on her bum as I would want someone who has seen scarlet fever see if it may be that. Good luck, keep us posted. I would be aggressive with antibiotics and not stop them after a short burst. Ellie
  24. Gibster, Thanks for the heads up. I am so sorry this is happening for your family. This is why we need to fix the healthcare insurance crisis. I am worrying about being cancelled with our insurance. The healthcare bills have been mounting because of the Pandas. Good luck. Keep him insured any way you can until the new laws go into effect. Also, make sure you get someone who knows about the new laws to give you advise. Ellie
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