KeithandElizabeth

Doug: Also remember that Dr. Tom Smith is a Pediatric Oncologist/Hematologist in Denver and he is willing to help your child. I believe your pediatrician know him. He consulted with Dr. Kovacevic to get IVIG dosage levels. He is amazing and will work hard to get insurance to work with your situation. He plans to help another family in California who could not get help in California. His staff is very caring and compassionate!!! Elizabeth

I bought a set of 25 tests and, in my own PANDAS obsessive state, I used all of them on both of my children and always got a negative result. But, I wonder if my son could be having false negatives since he is on 250 mg. a day of augmentin? Elizabeth

Leslie: Thank you so much for posting. We love to hear these success stories. Can you share your healing story. Did it take a full year for your son to recover? Did he remain on antibiotics post the one year mark after IVIG? Was he on prophylactic antibiotics or full dose antibiotics? Thank you in advance. We are all always struggling with these decisions on how best to heal our child. Elizabeth

Melanie: I think this is actually good news!!!! I am so happy that Dr. T. is working out for your son! Elizabeth

I am so sorry for the pain your whole family has suffered. I would recommend consulting with Dr. Kovacevic (webpediatrics.com) over the phone since he often does phone consults. We had one phone consultation with him and it gave me so much hope!!!! It would be nice to find someone locally to treat your son, but you can always fly to either Dr. Kovacevic or Dr. Latimer for treatment. I would try calling local immunologists to see if anyone is willing to work with PANDAS. Our initial doctor treated our son by consulting with Dr. Kovacevic on IVIG dosage levels and antibiotics amounts. Keep us posted!!! Elizabeth

Hi Stephanie: I am glad that you are happy with your new doctors. I am curious as to what treatment you are currently doing for PANDAS right now? Elizabeth

Michael: What are your next steps with your son in terms of treatment? Elizabeth

I am having similar issues, but with allergy pills (Zertec and Sinclaire) I go back and forth between giving them to my son or avoiding them. I think I am going to stick with the Zertec for now, but avoid the Sinclaire because it makes my son so hyper. If you learn anything else, let me know. elizabeth

Judy: If you still have a problem getting the IVIG in California and getting insurance to cover it, I used a wonderful Pediatric Oncologist/Hematologist here in Denver who would be more than willing to help you and get the procedure covered by insurance. Denver may be closer than the east coast or even Chicago. THis doctor would probably follow Dr. K's protocol, but is very open to your desires and is very knowledgeable about IVIG since he does it often for his cancer patients. His name is Dr. Tom Smith in Denver. Elizabeth

Both of my children have low vitamin D and one of our doctors thought it was a result of PANDAS and not the cause. Who knows?? We live in one of the sunniest states and because my son always had such sensory issues with sunscreen, he has been in the sun often without sunscreen and he is still low on vitamin D. The doctor thought that the immune system and digestive tract was so compromised from fighting this illness that it was not processing other nutrients as well, etc...... Just food for thought......You just don't really know what repreceded what...... elizabeth

Hi Buster: So, if you were to guess about my "non-PANDAS" 10 year old daughter with the high CAM Kinase II (171%), would you just say that her numbers were elevated due to recent strep infections and that her BBB remained closed? And then should these numbers just go down on their own without any treatment? Her other numbers, especially the anti-Tubulin(4x normal range) were also high. I know we are all just learning here and the Cunningham test is still in study mode. I wonder if any other children who did not have PANDAS symptoms, but were recently exposed to strep have taken this test? I am just continually worrying about her and always trying to figure this whole illness out. Elizabeth

Happy Thanksgiving to you too Jack!!! Keep us posted on how your son is doing!! Elizabeth

Hi Debbie: Well, the Pediatric oncologist/hematologist was really consulting with Dr. Kovacevic to help us with our son. He was not a PANDAS expert, but completely believed in it and was willing to do anything to help us!! I believe bubbamom also used a pediatric oncologist/hematologist. The other benefit is that they usually have an IVIG facility for the cancer patients. Elizabeth

Wow, what great news!!!!! Your family has been through so much and this sounds like it is a great treatment plan since the previous IVIG's worked so well for you and the PEX did not. Is he saying the PEX does not help with the T and B cells and that is why is was not successful? Elizabeth

We use an immunologist because this is the one type of doctor who either has their own IVIG facility or easy access to IVIG. I also feel that something has to be askew with the immune system in order for such a young child to have such a horrible mental illness which is physiologically based. The key is finding a good doctor who is willing to work with PANDAS. We also found a great pediatric oncologist/hematologist who is willing to work with us. Elizabeth

Faith: Can you explain the "milkmaid grip" So, is antibiotics your treatment plan so far? Thanks, Elizabeth

Eileen: I think about this all of the time!!! If I were a doctor, I would be calling all of the other doctors treating the same illness all of the time to discuss treatments, etc..... But, after watching several people I know fight breast cancer and get so many different opinions on treatment options, I wonder if this is just the nature of medicine. It is frustrating from the perspective of the parent though!!!!! Elizabeth

Ellen: Thank you for sharing so much information with us. We all probably needed to hear that these kids do get better!!! We are currently doing monthly IVIG and we are seeing a tremendous improvement. It has been very bumpy though. We had a relapse 2 weeks ago that was devastating, but we are now progressing very well. At least with my son, these relapses can occur just by being with someone who has the cold or the flu. While strep was our initial trigger, anything can cause an exacerbation. So, I think strengthening the immune system is key. Keep us posted! Elizabeth

Falling Apart: I once heard (this could be just a rumor) that one of the leading PANDAS doctors said that the kids who are instantaneously better after IVIG usually have a harder time down the road. His theory was that they really needed that IVIG. Our experience has been more of the bumpy road. So, I try to think of this as "healing" moments!! We were told to expect some definite rough times post IVIG and the brain takes a year to heal. Will you be doing monthly IVIG now? Elizabeth

Eileen: I am also homeschooling my son because he was so severe at the beginning of the school year that he was not able to even attempt to go to school. We are using the K12 program and I am amazed at how convenient it is..... My focus is regaining my son's health and I try to not get carried away with following everything in the curriculum perfectly. For example, my son cannot write well because of PANDAS so I do not make him write as much. I do quite a bit of writing for him. The amount of time it takes to get all of the work done is shockingly little. My son is in second grade and if we were to sit down and do all the work at once, it would probably take us 2 hours. Elizabeth

Hi JacQue: This is one topic with different opinions. There have been children who were vaccinated post PEX who had relapses from the vaccinations. I believe others on this forum can chime in with more information. If you ever decide to treat your daughter with IVIG or PEX, then I would do quite a bit of research on any type of vaccination post treatment. Elizabeth

Hi Kat: My son had severe night issues. He had problems going to sleep, staying asleep, waking at 4:00 am for the day and he had intense night hallucinations that kept him up for at least an hour in the middle of the night. Melatonin did help with going to sleep, but not staying asleep. About 3 weeks after his IVIG treatment, my son start sleeping longer and stopped waking up in the middle of the night. The hallucinations also ended! It was an up and down process though. I think other people may have had similar success with high dose antibiotics. My thoughts are with you because the sleep deprivation is so hard on the WHOLE family!!! Elizabeth

Hi Melanie: My son also had sight issues. Actually, the few weeks post IVIG were the worst. He would look at things and say that everything looked smaller than it was. He said "Ella (our dog) looks the same size as our guinea pig right now mom. Everything is so small." These symptoms did go away. Elizabeth

My son definitely had hot flashes. He would wake up in the middle of the night and want to shower because he was so hot. I think this "illness" affects so many of the organs/functions of the body. My son's blood sugar was also high, his iron was low, his vitamin D was low, and his bilirubin was high. I think he had undiagnosed strep for way too long and the body was fighting the bacteria too hard and it affected the rest of his functions. Elizabeth

Hi Eileen: First, I am sorry that you are going through a rough time right now. We had a relapse last weekend and I found it devastating. My son is doing better now, so I wonder if you will also see the sawtooth healing post PEX. I know steroids are used quite frequently with asthma. I don't know the answer to your question, but I wonder if you should call Dr. Trifiletti since you have seen him in the past. I know he has been answering the phone and if open to questions since he is just starting his practice. Elizabeth