KeithandElizabeth

I found this article about the relationship of vitamin D and infections to be very interesting. The article says that low vitamin D is the result of chronic infection versus the cause of illness and it says that supplementing with vitamin D may actually cause more harm than good. Both of my children have low vitamin D and they both have PANDAS as well as the co-infections of lyme and mycoplasma. I had been supplementing them with vitamin D until I recently read this article. http://www.sciencedaily.com/releases/2008/...80125223302.htm Elizabeth

The first 5 weeks were very hard for us. We really started to see a leveling out around the 6 week mark. Dr. Kovacevic told us he sometimes called the first 6 weeks the "suicide time" for some parents. Elizabeth

Dawn: I am so sorry!!! I can only imagine how stressed you all must feel right now. I know this will create controversy, but have you considered contacting the nay sayer, Dr. Kaplan? I think he is a strep specialist. At this point, you need all the opinions you can get. Can anything other than strep cause high Anti DNASE B? Have you thought of switching antibiotics from Augmentin to Azithromycin for the whole family? Elizabeth

My son has high T3 and his TSH are normal, but on the cusp of the low levels (hyperthyroidism). Elizabeth

SF Mom, I think you are taking 1.6 trillion units instead of 1.6 billion units? Elizabeth

We see the same nutritionist that SF Mom sees and our son is taking 400 billion units (only because I cannot get him to take anymore). A friend recommended this nutritionist to us because this friend had a severe, debilitating auto-immune illness that was never given a name. She had a fever for 10 years and was flown all over the United States for help, to no avail. She lost her job and was housebound for all of these years. Anyway, after starting on the high dose probiotics, she slowly got better and two years later, she is now a thriving artist and very healthy and happy. I know this amount of probiotics does seem extreme, but I have been doing it for over a year and I have never been healthier. I just wish I started my kids on this regime sooner. Donna Pessin, this nutritionist, believes that the current probiotic recommendations would take 300 years to really heal the gut. Anyway, just another interesting health topic to think about......... Elizabeth

Good point about getting strep after IVIG without antibiotics. So, if this is what you mean by "cure" then I don't have these answers. Maybe SF mom can chime in with what Dr. K's thoughts are on this since he must have some experience with these children getting strep after they are done with antibiotics. SF Mom, has Dr. K ever addressed this issue with you? Elizabeth

I have spoken with 2 families recently, who are not on this forum, and who have wonderful IVIG success stories. One family did IVIG 2 years ago and their daughter is now doing wonderfully and does not have any PANDAS issues. She said it did take a good year of healing after the IVIG. Her daughter has remained on antibiotics. Another family who I have corresponded with via email did IVIG 2 years ago. Their son was extremely severe and had pulled out all of his hair. They also said that it took a good year to completely heal, but that their son went off antibiotics after the one year mark and even had a normal illness, without symptoms, recently. In terms of this forum, PANDAS Chicago and Amy S have had wonderful IVIG healing stories. Diana's son is doing well. Again, I think that 99% of the people on this forum are the families who are still in the thick of things. At least, this is what I am hoping. Elizabeth

Debbie: I completely understand your position. Our 11 year old daughter is so much more milder than our son. We were planning on doing IVIG a few weeks ago for her and then we found out she had lyme. Dr. K said to treat the lyme first..... so we have to wait again and I feel nervous about her age. So, we will probably end up doing the IVIG when she is 11 1/2 years old. She is just on the verge of puberty now. So, I also think that the stage of development is more important than the age of 10 (at least I am hoping this is the case.) Elizabeth

My son has had this problem all of his life until we began giving high dose probiotics. He is now on antibiotics and takes 400 billion units of probiotics, under the care of a nutritionist. He no longer has any bowel issues. Another idea is to add 1 tablespoon of bentonite into a smoothie. This really helps, but I would do this hours away from taking the antibiotic. Elizabeth

My son had his first IVIG on September 1st and he improved to almost 95%. Then in December, we had "critters" from our dog in our house and my son developed a rash that looked like Bartonella. He then totally regressed. His next blood work showed positive for strep. His blood work also showed IGG positive for mycoplasma (greater than 5) and almost positive on the IGM (655). We recently did another big IVIG (4 weeks ago) and we switched antibiotics from Augmentin to Zithromycin. So, my question is what is the best antibiotic for strep, bartonella and mycoplasma, with possibly a lyme co-infection? Elizabeth

Hi Kari: My belief is that the high dose probiotics will help with the yeast issues. SF Mom and I see the same nutritionist and she has our kids on mega doses of probiotics. Our son is on 500 billion units a day. He used to have many yeast issues pre-antibiotics and now he does not have yeast issues, even though he is on constant antibiotics. Elizabeth

bmom: How is your son now, in terms of reacting to strep? Or has he not had a strep infection since the one 4 months post IVIG? Did you decide to keep your son on antibiotics? Elizabeth

We are switching, after consulting with Dr. Kovacevic. We will no longer do monthly and we did the 1.5 dose and now we are going to wait at least 3 months, and hopefully much longer, to see if we will ever need another one. Dr. Kovacevic felt that our monthly small doses were not helpful because they never shut down the white blood cells in the bone marrow, which tells the body to then make new, better, antibodies. And he felt that the monthly kept "stirring" the immune system. He said to us that 8 to 13% of the children will need a second IVIG, at the 1.5 dosage. We just keep learning as we are going over here......... Elizabeth

I am so happy that you have found a cause for your son's illness. I am curious, though, as to how you treat mycoplasma differently? My son has shown borderline levels of mycoplasma as well as high strep and he is on zithromycin. I was hoping that this was good enough for both illnesses. elizabeth

Thanks Diana!!! This was very valuable information. Dr. K did confirm the 1.5 dose with us as well and said anything more is inconsequential. This can be especially important, as Diana said, when parents have to pay out of pocket. Thanks again, Elizabeth

bubbasmom: Have you done the ASO and ANTI DNASE B titers on the whole family? Our son had a regression post IVIG and his sister and father both had elevated strep levels in their blood work. I also had strep B during delivery. elizabeth

Thank you so much for posting. We REALLY need this positive updates. Elizabeth

Thank you so much for sharing all of these studies!!!! Elizabeth

My son also has high IgE levels. His are in the 450ish range. He never actually had symptoms of allergies. How are you working on you child's IgE levels to bring them down? I am nervous about doing any allergy shots since we just did IVIG. Elizabeth

I am so sorry you are having symptoms again! What did you do for treatment? Do antibiotics help you at all now? Elizabeth

I also love this book!! I was reading it on vacation and when I got to the paragraph about the benefits of melatonin for these children, I put the book down and drove to the nearest store to buy it. I had always dreamed of giving my kids some sort of sleeping supplements because they often had sleep issues (I was not aware they had PANDAS) and I was so excited to get the go ahead in this book. I also learned so much about the overall immune system and how asthma, allergies and even PANDAS are all related. elizabeth

How wonderful that he is doing so much better. And thanks for the tryptophan advice!!!! Elizabeth

I hope you had a wonderful birthday yesterday. Thank you for sharing all of your knowledge gained from experience. My husband, my son and I all have abnormal iron levels, abnormal thyroid levels and low vitamin D levels. This has been so helpful to me and I now plan to incorporate the fish oils into all of supplement regime. I notice that most of the brands do not have the 7 to 1 ratio. Do you recommend a particular fish oil brand? Thanks, Elizabeth

Our immunologist recommended Zantac 3 days before and the day of and after IVIG to prevent nausea. We also used motrin for the headaches. We just used it preventatively. Elizabeth