KeithandElizabeth

Wow, thanks for sharing all your information. Our son, Quinn, is also low on iron and vitamin D and his lymphocytes were high as well. I kept meaning to post to see if anyone was familiar with the high lymphocytes. I think it just means that they are fighting an infection? Great tip about the GABA!! I have read that it is very calming. I could use some of it myself!@!@ We are also on 250 mg. of Augmentin a day. Our immunologist also said that the IVIG is supposed to help battle the infection, hence we do not need the higher dose. Who knows, everyone seems to have a different opinion Let us know who the GABA goes. And what great news that the IVIG was so helpful to Pixie!!! Elizabeth

I just want you to know that we can all empathize with you. It is such horribly isolating feeling and you have this huge sense of panic. My son and I have also driven home from school crying together!!!! I forget, but are you in California? Isn't there an immunologist, Dr. Gupta, there who is treating PANDAS? I think, based on Saving Sammy, upping his Augmentin dose is a good idea. Remember, Worried Dad and Sammy went up to 2000 mg. a day. I am just a mom, not a doctor though. Are you giving him motrin as well? Elizabeth

Hello: We did a smaller dose yesterday. It was so smooth...... it took about 2 1/2 hours and Quinn did not have any side effects. I know there may still be a saw tooth healing pattern, but within 24 hours of this small dose we have seen a huge improvement. He was probably 60% improved within 6 weeks of his first dose and then he seems like he is 90% improved after IVIG yesterday. I do need to be careful because I get overly optimistic at times. The one thing that we are not seeing improvement on yet is the constant, like every 5 minutes, need to urinate. The doctor believes we may need to do 4 or 5 more small dose IVIG's. He wants to make sure that Quinn's IGG levels remain in the 1000's without IVIG. How are you doing??? Elizabeth

Susan: What wonderful news! We have had 2 IVIG's and our son's OCD issues are practically gone!!!!! His first IVIG was 6 weeks ago. He was so debilitated from OCD and anxiety that I had to home school him. Today he asked to go to school again. I will try to give a full update later. It is really mind blowing when you think about it! I am excited for you. Elizabeth

Dr. K did tell us when our non-PANDAS daughter was having unexplained GI issues that the doctors should have just swabbed her anal area for strep... Of course, they never did that so we will never know. But, strep can be found in all kinds of areas!! Elizabeth

Okay.... our veterinarian does think I am nuts.... after calling 5 times to discuss the possibility of our pet giving us strep, I had them test our dog. They did not believe that a pet could give a human strep. The test came back negative and then I still had them write a prescription for Amoxicillan to treat her anyway. Why not?? We get so desperate!! Elizabeth

I would have your son do the immunological work up. Maybe he needed more than one round of IVIG. If his immunological work up is normal, then maybe PEX would be more helpful. If there is a deficiency with his immune system, I don't believe PEX addresses the deficiency. Just some thoughts.... Elizabeth

My heart goes out to you peglem!!!! Elizabeth

Hi Coco: I had chills reading your story! I am so happy that you are now getting the right treatment. I feel crazed when I think of how many kids are misdiagnosed and are horribly suffering. We were so torn between doing just the one dose of Dr. K's IVIG, which we did on Sept 1st, and doing the 6 months of IVIG. We have finally decided to do the 6 months. We are currently at 6 weeks post our first IVIG and I would say our son is 60% better. He was pretty debilitated before the first IVIG with such severe anxiety and OCD that we could not leave the house or go to school. We were once this social family who became so alienated from our friends and community. Who is your immunologist? Is he in Connecticut? I know Dr. Leckman often refers to an immunologist in Connecticut. Thank you for sharing your story. I, too, feel that I could talk forever about all of this. Let us know how your second IVIG goes!!! Elizabeth

How far are you from Chapel Hill, N.C.? I know that there is a doctor there who did some original work with Sue Swedo. Her name is Elian Perrin, MD Professor of Pediatrics Chapel Hill. I don't know of anyone on this forum who has seen her. What is your closest larger city near you? Elizabeth

I thought that once you had PANDAS, anything can cause an increase in symptoms. Dr. K told us the flu or any other virus would cause a flare up. Is your son still on antibiotics? Have you checked for strep, both with a swab and the ASO titers? I would consider doing the immunological work up as well. How is your son doing now? elizabeth

We all understand the stress and panicked feeling you are having. Where do you live? Between Dr. K and Dr. Latimer, as well as several immunologists who are treating PANDAS, I am sure you can get some help soon. An immunologist may also be able to help with the allergies. I would try to get the antibiotics if you can... I had a hard time getting them as well. You can also use Motrin to decrease some of the inflammation. Keep us posted and we are all thinking of you. Elizabeth

Hi Coco: Good question. Our son was given Gammaguard (spelling?) for his first IVIG at Dr. K's dose, but with a local doctor and he did not have any symptoms. He is having his second IVIG, at a much lower dose, this Tuesday and will be given Gamuenex. I will let you know if we see any difference. How is your daughter doing now? Do you mind if I ask what immunological deficiencies your daughter has? Elizabeth

SF Mom: I am curious about a post where you mentioned something about Dr. K saying there may be some sort of connection between Kawasaki's and PANDAS. Is this what he said? We have a friend with a 12 year old son who had Kawasaki's at 18 months and ended up with 2 heart aneurisms from it. He now has horrific OCD and will not leave the house. They are going down the psychiatric route, but of course I am thinking PANDAS. I am suggesting that they consult with Dr. K. Elizabeth

Both of my children's ANA titers were negative. Elizabeth

I am so sorry you are going through this stress right now. Have you thought about increasing the Augmentin like Worried Dad did? Have you checked for strep?? I would check his ASO titers as well? Did you do the immunological work up? Maybe you will be one of the families that needs additional IVIG? Keep in mind that whether it be additional IVIG or higher dose antibiotics, there is so much hope!!!!

Wow - I am glad you did the immunological work up!! Do you feel distress or relief by all this? I guess I felt a mixture of both emotions when I got my son's blood work up. I felt sad that he had a weak immune system, but relief in understanding how he developed PANDAS and that it is treatable. Did you doctor say how long or often your son would need IVIG? I am still confused about the vaccinations..... doesn't IVIG produce the antibodies to the failed titers?? I have heard of other kids whose pneumo titers rose after IVIG. I am still trying to understand this aspect of IVIG? Elizabeth

Fallingapart: How are your daughters T and B cells? How about her IGG levels? Have you emailed Dr. K? He definitely responds to emails. It is just so amazing that she is so dramatically improved so very quickly from IVIG and then drops so quickly. It seems that her body just "sucks it right up." I wonder if she is in desperate need of it and you may need to do it monthly. Does Dr. Latimer feel that PEX will only be needed one time and then no more IVIG's? Elizabeth

Kelly: What a decision to make since it seems that your son has been doing well, but not 100%. Dr. K feels that you will not easily get to 100% with antibiotics alone. I did feel that IVIG as an outpatient procedure was relatively easy. Our son just watched some movies and then we went home. We did not have the side effects, except for a headache during the night. What does Dr. Latimer say about PEX for your son? I am still confused as to when she recommends IVIG versus when she recommends PEX. Elizabeth

Hello: Here is an interesting article about how Berberine Sulfate, a supplement, blocks adherence of strep. http://www.pubmedcentral.nih.gov/articlere...gi?artid=175870 This is an ingredient in our probiotic supplement. Elizabeth

Hi Ellie: Thanks for sharing your story. How hard for a 17 year old to be going through this! I feel that you are on the right path now with Dr. Latimer!!! We will be thinking of you. Keep us posted! Elizabeth

Hello Worried Dad: I have been thinking of your question often since I finished reading Saving Sammy last week. I look forward to Buster's answer. I am curious as to whether your son had the ASO titers done recently. I, too, think that with Sammy, maybe he had a lingering infection inside of him. That is the only reason that I can think of as to why such high doses of antibiotics helped him. On the other hand, our son did have elevated ASO titers, but now they are completely normal. However, now he is fighting a current Epstein Barr infection which is viral. Hence, I do not think such high doses of antibiotics would be as beneficial to our son. So many questions and so few answers!! I do think of you all and I am so happy that you are seeing improvement!!!! Elizabeth

Hi Karen: I don't know his opinion on revaccination. He thought that the one treatment (per Dr. K's protocol) could maybe "heal" the PANDAS, but that he felt that 6 smaller doses of IVIG could prevent further issues in 5 to 10 years. He mentioned preventing other autoimmune disorders that can happen later in life. He did say that I would probably not need anything after the 6 months. He said that my son had a very "immature" immune system and we needed to maturize (spelling?) his system. This doctor is known as an aggressive doctor, so I do feel nervous about what I am doing. I especially feel nervous because Dr. K said that I did not need to do this and he does have 10 years of experience. I do know that he is currently treating other kids who have PANDAS, but I will ask about his actual history and success rate with previous children. I will see him this Wednesday. He also said that my son was recently attacked by 2 strong viruses, one being the Epstein Barr virus. So thank you for the good questions. I will add them to my question list. Elizabeth

I just have to say that I really needed to read your post tonight!!! Thank you so much. We do not hear that often from the people who are doing so well - because they are happily living their lives!! Is your daughter still on antibiotics? I am so happy for you and for your whole family!!! Elizabeth

dcmom: Since you are seeing Dr. Latimer, I believe, can you ask her about your thoughts that IVIG is a therapy versus a cure. I would really like to know what she thinks since we did IVIG in hopes that it is a cure. I know Dr. K believes it is a cure 80% of the time.... I am hoping that the people who are relapsing on this forum are part of the 20% Anyway, I would like to know what she thinks, but she is not our doctor. So, it may be helpful if anyone who is seeing Dr. Latimer can ask her this question. I know the two doctors disagree about a few things and we all tend to be biased based on which one we are seeing, but it would be interesting to get her view point. I know she favors PEX, but does she also believe IVIG can be a cure?? Thanks, Elizabeth