memom

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.

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

cam kinase 156 antilysoganglioside 640 80-320 antitubulin 2000250-1000 antidopamine 1 2000500-2000 antidopamine 2 2000-16000

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

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

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

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

Let's bump this to as a reminder to vote. Ellie

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.

Thinking of you. One more hour to go. Ellie

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

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

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

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

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