KeithandElizabeth

Yes!!! Dr. K told us to expect this..... this is what is considered the "sawtooth" pattern of healing..... elizabeth

Oh Melanie - It is so painful for a parent to go through this.... Yes, we have good days and bad days and good moments and bad moments. Quinn's thoughts and OCD were our primary issues and tics were our secondary issue. So, I will think that we are doing so well and then Quinn will make a comment about one of his fears and it feels like someone just stabbed me. Or, he never had eye rolling and he had a day of eye rolling. I just wanted to throw up.... Overall, I see much improvement. I think it may take longer for you because Danny is older. Just keep remembering that the brain can take a while to heal. elizabeth

Our son had reached such a horrific state mentally with nightly hallucinations and completely irrational fears of swallowing paint, toys, etc...... that I think he was relieved to learn about why his brain was working in this manner. We have been completely open with him. He is actually quite cute about it sometimes. We were camping in my dad's Euro Van and our son woke up at 4:00 am and preceded to open the door of the van and go to the bathroom every 15 minutes. Our daughter got so frustrated with him and yelled "you don't see me going to the bathroom every 15 minutes. Our son raised his finger in the air and smiled the cutest smile and said "Keira, don't you remember - this is the PANDAS." I think he is comforted with the explanation of what is causing him to have scary thoughts and that we are working on healing him.

Melanie: Did you ever do the immunological work up? Perhaps Danny will need more than one round of IVIG? I have heard that insurance would cover this if there is an immunological deficiency. And so far, several of our children have been either failed/or been low in several areas of the immunological work up. And the healing process is so complex for the brain - we are going up and down 3 weeks post IVIG. Who is treating your son that will not give him antibiotics? Our new immunologist who does treats PANDAS is anti-antibiotics as well. I am still going to do the year of antibiotics just to be safe. It is all so stressful and my thoughts are with you right now! Elizabeth

SF Mom, I am surprised that Dr. K recommended the Azithromycin to you because during our consult he did not want us to use Azith and instead wanted us to use Augmentin. I was nervous because Amoxicillan never eradicated strep for our kids and I hear Augmentin is stronger, but that Azith. is the best. Has he changed his protocol? Elizabeth

I think that no matter what option you choose, you may have a relapse if your immune system is weak due to unknown allergies or just an immune deficiency. I think that whichever treatment your choose, it would be beneficial to do an immunological work up a year later just to check in so to speak. Dr. K also told us he was working hard on 2 cases that were unresolved. Perhaps, these cases are the exceptions that need more than 1 IVIG treatment. As Kelly mentioned earlier, our kids are the "testing" kids. Until recently, most of these kids were not doing immunological work ups. So, we just keep learning... elizabeth

I was lying in bed this morning analyzing the same thing: PEX vs. IVIG. After reading these posts I agree that Dr. Latimer and Dr. Cunningham favor PEX and Dr. K as well as our immunologist favor IVIG. I keep visualizing sitting around a table with all of them and listening to them debate this issues along with the issue of how long to take antibiotics. Anyway, please refer to my post a few days ago titled How IVIG works with Autoimmune diseases. I need to find a similar article for PEX so I can better compare. Our immunologist feels that IVIG is superior because it builds up a weak immune system and modulates an overactive immune system. I do think that if I had a child older than 13, I would do PEX first followed by IVIG second. With a younger child, who does not have low IGA, I think I would just do the IVIG, which is what we are doing. This is just my thoughts to myself as I lay in bed thinking all night long!! It appears that both treatments are successful right now. I know Dr. K says that he has an 80% success rate with IVIG with one treatment. Does anyone know what the success rate is with PEX? I guess this is just like any other disease where the treatments are so varied. We have a friend dealing with breast cancer and she just went to 4 doctors and got 4 different treatment plans!! I now understand how frustrating this is for her.

Kelly - good point. We switch probiotics around quite a bit to get a variety of stains. Currently we are using Custom Probiotics and they say to take the probiotics on an empty stomach. You can find articles stating that it is more important to take them on an empty stomach so that they are more effective and then you can find articles saying to take them with food because of the stomach acidity being higher when your stomach is empty. elizabeth

This is an interesting thread.... Dr. K mentioned to us, and I believe he states in his website, that many of these children are very strong in math and were very articulate at an early age. I would say that our son was/is super strong and above level in math and reading, but can barely write and his art work looks like the art work of a 2 year old. Last year (1st grade) our sons teacher said she never saw a student before who wrote so poorly and whose fine motor skills were so behind, yet they did so well in math. Now I realize, after a year of wasted time in occupational therapy, that this was all related to PANDAS. If we were not so emotionally vested, this could actually be pretty interesting....... So, not only do these children have a genetic predisposition and perhaps a weak immune system, but they usually have a personality prototype for this disease. Elizabeth

I do remember reading in a thread that several people who are no longer using this forum healed their children naturally using Dr. Amy Yastol's (spelling?) healing regime. I think she is renowned for her natural healing methods with Autism and Neurological Disorders. I believe you can read about her if you google Dr. Amy's Healing. I have heard that she is expensive. Elizabeth

One idea would be to give him his antibiotic after school or before bed and then give the probiotics first thing on an empty stomach just to make it more effective. elizabeth

I am doing both probiotics and Saccharomyces boulardi. I give the probiotics/S. boulardi first thing in the morning on an empty stomach and then again at night on an empty stomach. The analogy our nutritionist gives is that it is filling up the holes in the trash can (leaky gut syndrome) and it will be more effective on an empty stomach. Elizabeth

Hello: I think you will get different answers depending on what you read. I just checked out a book called "Probiotics" from the library and it said that you should be taking probiotics while you take antibiotics, but to space them at least 4 hours apart. I also read on line that if you are on antibiotics, then you should be taking at least 150 billion units of probiotics a day to counter the damage of the good bacteria from the antibiotics. And our pediatrician said to definitely take 2 capsules a day (250 mg. each) of saccharomyces boulardii while on antibiotics. I guess this is a good yeast that fights the bad yeast caused by antibiotics. elizabeth

I thought this was a good description on how IVIG works with autoimmune diseases: http://www.suite101.com/blog/daisyelaine/ivig_therapy Elizabeth

Kelly: It is really revealing how your kids have a direct correlation between their immunological work up and Cunningham results!!! I think it is important to do both tests before steroids or IVIG to get a good baseline. We unfortunately did our Cunningham blood work post steroids so I have skewed results. Elizabeth

Hi Eileen: We never broached the subject of revaccinating. I did do full vaccines on both of my children, but I do have some regrets now. I wish I was a little more selective with them and did a little more research. In retrospect, my daughter had mild stomach aches when she was little which were attributed to constipation. I never knew until we went to the doctor because she did go to the bathroom everyday without problem, but he doctor said that she still had constipation issues based on her physical exam. This summer she had such severe stomach aches followed by a serious GI infection (rectal bleeding) that was completed unexplained. Everything came back negative. I will PM you about probiotics. Elizabeth

Hello: I was in shock when I looked at the blood work results because Quinn has been a somewhat healthy boy up until our PANDAS diagnosis. I feel like this doctor is right about wanting me to look at PANDAS as a symptom and make the overall functioning of the immune system our priority. He did say that the IVIG will help his immune system to mature and that it would probably only take 6 months. Now this doctor is known as an "aggressive" doctor in terms of treatment, but he is also known as "brilliant." So, I think I will follow his treatment plan. He did say that their clinic does PEX as well as IVIG, but he really preferred IVIG for our situation because IVIG will help with the underlying immune situation although it will take several sessions to complete the treatment. He further explained why some of these children are failing the vaccine titers. He said that at the time of the vaccine, if the child's immune system is weak, they will not make the antibodies to the vaccine and the vaccine basically dissipates in the body. In terms of my daughter's GI issues, we drew blood yesterday for a full immunological work up on her as well. I do have to day that I have been giving her a high dose of prebiotics in the morning and then 125 billion cfu's of probiotics in the evening and she is doing so much better. She has not had any stomach aches since 1 week after I started this regimen. And in terms of her high Cunningham bloodwork, the doctor said that the gut and the brain are always communicating and she definitely has inflammation somewhere and again we need to study her basic immune system. Thank you all for your support. I feel like we are learning so much from each other. Elizabeth

Hello: You will have to read my recent post about our immunological results. Our son was never very sickly until this bout of horrific PANDAS. Based on our results, we will be doing IVIG every 3 weeks for 6 months. I think that the information can only help your family. I do wonder how IVIG can affect the results since you have already had the IVIG? Elizabeth

Hello: We just got back our immunological work up and wanted to share our results and the doctors treatment plan to get some feedback..... Quinn had IVIG at Dr. K's dosage level with a Pediatric Oncologist 2 weeks ago. Prior to the IVIG, we drew his blood and just got back the results today. He failed all 14 of the Pneumoniae titers. He also failed the Hep B titer. He was normal on the IGG 1-4 subclasses, but on the very lower end of normal. He was normal for the IGM and IGA and high for the IGE (allergy related) He was positive for Epstein-Barr, He was high for Isohemagglutinin Titer. And his T and B cells were abnormal. This immunologist says that he treats and believes in PANDAS, but he wants me to realize that PANDAS is just the symptom and not the problem. The problem is the weakened immune system! He said if the symptom wasn't PANDAS, then it could be another autoimmune disease. We discusses my daughters GI issues and he said that can be how she responds to a weakened immune system. Now the biggie...... he wants us to do IVIG every 2-3 weeks for 6 months. It will be at a lower dose than Dr. K's recommendation. Any thoughts?????? Elizabeth

Hello Dut: My son's were not in the actual diabetic range. The finger pricks were around 150 to 200. I believe they should be under 100. Diabetes 1 is also an autoimmune disease. How scary for your family - as if you all didn't have enough going on already in your family. There really seems to be an epidemic of autoimmune diseases in young people. elizabeth

Yes!! We have the diabetes finger prick kit that we borrowed from my dad and my son's sugar levels were high during the times he had strep. Elizabeth

Hi Manda: I know that Healing the Childhood Epidemics by Kenneth Bock and Jenny McCarthy's book on Autism mention PANDAS, but they are not about PANDAS. How did your immunological appointment go today? elizabeth

Hi Dawn: My heart definitely goes out to you.... you have had a long journey. I am so happy you have found Dr. K and are trying IVIG. Just to let you know, the steroid burst was helpful to our son, but not dramatically so helpful like it was for so many other people. And we are seeing healing with the IVIG. I just want to give you some hope on that note!!!! Elizabeth

Okay, I am replying to myself... I found this website which describes ways to rid the tonsils of strep naturally and it also mentions a partial tonsillectomy if the other measures do not work....Interesting! A partial tonsillectomy decreases the size of the tonsils and uses a laser, I believe, to rid the tonsils of the scars. The good news is that the tonsils remain intact and the first line of defense against strep since they are a strong component of your immune system... http://www.ehow.com/how_5235550_treat-cryp...onsillitis.html elizabeth

SF Mom: Did your son ever have the tonsillectomy? This was such a hard decision for us...... Dr. K said that it was irrelevant to our PANDA situation. We ended up NOT having the tonsillectomy, but our son's tonsils are huge and red... We get such conflicting advice from all of our doctors/nutritionists, etc.... What finally swayed us against getting the tonsillectomy is that one doctor told us that we may see a short term solution, but strep can go anywhere in the body and a tonsillectomy would not stop our long term problem... At least if it is in the tonsils, you are better able to detect strep.... Any thoughts? I am hoping the year of Augmentin will decrease his inflammation in his tonsils. elizabeth