cynditk

What we're dealing with is incredibly disregulated immune systems, and immune systems are incredibly complicated in and of themselves. The doctors are 1 step ahead of us, trying to figure this out as they go. There is no handbook, no map. We have been at this for 4 years now. Whole months go by in a blur of (for me) caregiving, putting one foot in front of the other, seeing another specialist, making endless arrangements and trying new therapies, new medications. In my job, I work with people who have MS and it feels very similar to what they go through-some of them maintain their functioning, some of them get worse. Every day is an unknown. My son is in an acute stage and housebound for the last 3 months- we have a handful of diagnoses that we are dealing with, PANDAS, possibly PITAND, Immune Deficiency, ADD, Learning disabled. The symptoms he has affect every bodily system-the behavioral stuff is a small part of his overall picture. He is suspect for Lyme or Mycoplasma. On and on it goes. I know he will live with this for the rest of his life. It would be nice if someday there's a cure for him and he can resume a "typical" life, but I don't count on it happening anymore. At this point we are still reaching for all the medical help we can get, but quietly planning a life that will include chronic illness and finding a way to create the best possible experience for him. He has been ill with various things for most of his life, and he is only 16. He has had months and even 2 years when he was relatively free from sickness, but those times have been the exception rather than the rule. Before antibiotics and immune modulating treatments he would have probably died, so I am grateful for him to be with us and share the life that he has with us. Sometimes I feel that he suffers too much, and that is the hardest part-helping him to see his life as worthwhile in the midst of all the suffering, helping him to see the bright spots and helping him feel loved and connected to life.

Melanie: Who is your doctor and are these treatments covered? How did you get covereage for such a high dosage of IVIG?

Momaine: Who is your immunologist and where is he/she? What are you doing to treat the Lyme? Is your daughter stable/recovering yet?

Hi, My dd is a bit of a complicated case with PANDAS and Lyme/Bartonella infections. But when she had her first ivig (we didn't know about the lyme/bart then), she showed improvement overnight with mood and attention level but it took a couple of weeks to see an improvement in OCD. Then after two weeks and moving forward, she continued to improve in that 8 week period. (gets complicated after that but that should be enough infor for now) Best of luck to you. My dd was never on Penecillian and she did not do well when she went off Zithromax and Augmentin. Now we know that was probably due to lyme. Our immunologist's nurse recently said something that made me thing a large percentage of her pandas kids are showing up positive for lyme. Hi, Who is your immunologist and where are they? What are you doing to treat Lyme and is your daughter stable yet?

We got an appointment for end of September. Does she do long-term antibiotics, are kids going into remission who treat with her, and does she get reimbursement from insurance for IVIG? Trying to decide whether I should wait for her until end of September, or travel and see someone else sooner. We live in the Seattle area, my son is treating with a local DAN who has no expeience with PANDAS, he is currently on antibiotics- 1000mg Zith daily-also steriods, for past 3 months-he'd doing better but still mostly housebound, no school since April. He is already dx'ed with immune deficiency and also does treatment for this with IVIG, though not as high dose as he would need to treat PANDAS. Still very sick, need to get tested for Myco and Lyme to figure out why he is so sick in addition to the the PANDAS

Does Dr.Keller in Seattle use long-term antibiotics ?