patric

My ds8 was on a too low dose...250 once a day so his pandas doc upped to 500 a day unless he is sick, then bid. (augmentin) Nicklemama, I was curious what the dose is for your son is when not sick? My son is also 8, but weighs 72 pounds. Also, how do you know when to stop treatment dose? Thank you for any info:)

Hi Eljomom, My ds8 presented with almost constant vocal and motor tics. The ivig has helped tremendously! Now he only has very slight almost imperceptible tics after an illness, which doesn't usually start until 2-4 weeks AFTER the illness is over. Otherwise he is tic free. I do think his being young helped IMO. Best of luck:)

Hi Tiffany, Best of luck to you in Chicago. You are in good hands! It is a pretty boring (which was fine with me) all day procedure so bring books, computer, etc. if you catch Dr. K at Starbucks which is right next door, he will usually sit and chat ( also will chat in room). Anyway, I wish I had a list of questions to ask as I thought of them all later. If you have any questions about the area or procedure, feel free to ask. I live about 20 minutes from there. Oh, and don't forget to hydrate! By the way, the ivig helped my son tremendously! Sharon

I got goosebumps reading your post! What an inspiration to us all. Happy birthday to your son and thank you for all of your informational and inspiring posts. You are paying it forward for newcomers and "oldies"" alike. Sharon Ps. Keep me in mind if we ever do have a Chicago support group. I am not in a position time wise to organize it or start it up but would love to participate if it does happen in the future.

I would keep the appt. as it is better to be proactive than reactive. This way you will have a plan in place and a doc to consult if symptoms ramp back up after an illness.

Hi burnell, Can you explain a little how you got insurance to pay? We paid up front a year ago and are still fighting the insurance company to pay. Any tips or codes would be appreciated!

LLM that is good advice! Helpmyson, I read your post late last night and it really brought up a lot of emotions for me as I saw a lot of my own story in yours. I also didn't want to imply that you are not seeing good docs, but was colored by my own experience (and my emotions) with doctors and misdiagnosis and/or mis treatment. Also, my son had a pretty straightforward case ( no Lyme, etc) so I only know the path we took that worked for us, but realize that everyones path may be different. I wish you all the best in this journey!

If you are in the Midwest (minnesota?) you could go to dr Kovacevic in chicago. You could email him also i think and give a description of symptoms etc. and he will email you back. He is one of the most experienced with pandas. In my opinion I would not waste time with a doctor unless he is one of the four or five in the country who are recommended by the parents on this forum. If you are on east coast, or elsewhere I am sure some will chime in about excellent docs there. Good luck!

Hi! My heart goes out to you as I know this can be a scary time of uncertainty. There is hope and treatment if you can get to a pandas doc. Colleendonny is right that there are very few pandas doctors and I would get an appointment with one of them as soon as possible. They will help guide you to your next step with treatment options. The forum is also a huge help! What part of the country are you in? Keep in mind you may have to travel across states, but getting to the specialist is most important. Our son had major vocal tics and motor tics, sep. anxiety and rage like symptoms and after treatment with abx and HD IVIg, he is about 95 percent improved! We saw an immediate and drastic improvement almost overnight. However he does not have Lyme or other co infections so he results were dramatic! Best of luck to you and there is always a shoulder to lean on this forum. We understand. Sharon

Hello everyone, My ds8 was recently exposed to strep from a playmate, and woke up with a sore throat and mild fever. I ttook him to our ped, who is also a pandas skeptic, but is the best of the non believer docs we have seen. Anyway, he did not want to do a culture because he insisted that since he is on a treatment dose, 1000 a day of augmentin, there is no way he could have strep. Well I insisted anyway and he agreed to culture this time only. My question is, is there any truth to what he said? My instincts say he can still get strep, but I am curious to the science behind it. The doc said that with augmentin specifically, he would not get strep. Also, does anyone (maybe momwithocdson) or someone else in the Chicago area know of a pandas friendly ped? Preferrably south or west suburbs? Oh, and we got an email about submitting our story for a pandas episode on Anderson cooper. Any thoughts on this? I am hesitant to expose our son to the publicity but would also like to help the cause. Sorry for so many topics in one, but I haven't had a chance to write in a while, so I have been "saving it all up." Thank you! Sharon ant pat

Thank you for this valuable input! You did raise some points I hadn't thought of. We go to Maui quite often as a family and even have a small business there, so my son is all for the idea as we go every christmas and he loves it. I don't currently homeschool but have thought of that as well, but trying to keep him that isolated from all of the neighbor kids would be tough. I am just thinking his quality of life would be better in Maui, but this could be wishful thinking as it has been a miserable winter for us with one of us sick after another. Incidentally, I was wondering if you know of a Chicago area support group where pandas families get together like they have elsewhere? I am sure there are a number of us here. Thank you again for your thoughtful post! Sharon

Hello everyone! Thank you for all of your expertise and counsel! My ds8 was treated with ivig last June and was completely "cured," that is until this winter when he has had one infection after another followed by pandas flare ups. My question is if anyone knows of any info to support living in a warmer climate for the winters to lessen the odds of infection? My parents live in Hawaii and I could take my son for the winter and home school there. However my husband can not leave his job to be with us 100 percent of the time, but could still be there quite a bit. We are even checking into the family medical leave act to see if he can come without any repercussions. The thought of another winter in chicago and all of the illness scares me! I know he could potentially get sick there as well, but iam thinking a lot less. My extended family and friends think I am nuts to even consider it, but honestly I value the opinions here even more! Please let me know your thoughts. Would you do it? Thank you, Sharon

Hi, My son had IVIg last June with dr. K. We could have had the treatment done elsewhere and possibly paid for with insurance. However, after much discussion my husband and I decided to go with a pandas expert. Dr K. said that while other doctors might be able to perform the IVIg, they will not know what to do for follow up. Boy are we glad we chose that route as we have needed that Follow up many times. In fact, every time my ds8 has gotten sick and had a flair up, Dr. K has been there with a course of treatment. Good luck with your decision!

Hi. I asked my family to read the book "saving Sammy" about one family's struggle with PANDAS. This has helped us to know we are not alone with this and what symptoms and behaviors are possible. I also agree with everyone else to find a PANDAS doctor and not just a pediatrician who may understand it, and mean well, but won't treat. This is just my experience after seeing six ped. Drs. Including pediatric neurologists. Besides, it can't hurt to get a consult and at the very least it will calm your anxiety about it. One of the other posts mentioned four PANDAS docs. I believe Dr K is closest to you if you live in Wisconsin, but not 100 percent sure of that. Blessings!

Hi. There is a very knowledgeable pandas doc in hinsdale IL which is outside Chicago and probably only a couple of hours drive for you ( some people travel much farther). His name is Dr. Kovacevic and I believe his website is web pediatrics.com. I am not sure about any PANDAS docs in Wisconsin. Maybe someone else will chime in. I also agree with kiera. Don't be scared of severe cases and there is lots of hope and treatment options. Best of luck!

Hi, My Ds8 started exhibiting this explosive rage about 3-4 weeks after having pneumonia. We were even in the mall when he had a full on melt down in the store, thrashing on the ground, yelling about throwing things through the window, etc. His pandas dr. Recommended doubling his preventative dose of augmentin from 500 to 1000 per day. Within days we saw a huge improvement and completely back to "normal." This was in December and everything was fine until last week.after he had gotten another virus, so we are back on the double dose. I know this will not work for everyone but is just our experience. One more tip, "after every illness replace all toothbrushes in house as they can harbor strep and dishwasher won't kill it. Not sure if that's true, but better safe than sorry."

Hi, We took our ds8 to Dr. K. about a month ago for our first consultation. We paid out of pocket, as he did not take our insurance. It was an hour long consult that you pay for. He first talked to our son and then had him wait in the waiting area while he talked with us. He will give you very specific and detailed information on PANDAS and the treatment. I would take notes, as there is so much he covers and hard to remember it all at the time. He is a little quirky, but IMO it is part of the diagnostic process he does. We felt a huge relief after our appointment, as we finally felt we were in great hands and hope for a successful treatment. We are scheduled to do IVIg with him next week. This is also not covered by our insurance, so we will pay out of pocket for that too. As far as going to your ped Dr. first, I would just go right to Dr. K, but that is just my opinion which is based on several dead ends and lots of discouragement with other doctors not understanding and even giving us misinformation. Sharon

Hi everyone, I have been reading all of the posts and thought I would ask all of the experts on the forum before asking my Dr. (Dr. K). My ds8 is scheduled for the IVIg in early June. Is there some meds or something to take prior to treatment? I read something about Motrin? Is there any thing else? What about Lyme? He has never been tested. Is this something I should have him tested for before the treatment? What is herxing? I am trying to make sense of all of this, and this forum has been the most informative, positive, and supportive by far. Anything else that you can tell me that I haven't asked about or how to prepare and what to expect afterward would be greatly appreciated! Sharon

Hi, We also see Dr. K. and he has been wonderful. We wasted our time with 6 doctors prior to him and most had never heard of PANDAS and the ones who had, did not know how to treat it. When we made our appt. Dr. K. said we could do a consultation over the phone if we were too far away so maybe that is an option. We are very fortunate to live only 20 minutes from him. Good luck!

Hi again Holly, Just wanted to let you know to check out the post about Dr. K. toward the bottom of the page on the question "can anyone help my husband." I found it REALLY encouraging about Dr. K. and IVIG Sharon

Hi again, I just wanted to thank you for posting this! I felt the same way about Dr. K. and felt like I was in great hands. It is when I went back to my primary to try and get insurance coverage, the doubt crept back in, because he was not familiar with PANDAS at all and told us worst case scenarios. You are a beacon of hope for our family! I am going to show your post to my husband as this is what we needed to hear right now. Bless you and thank you! Sharon

Hi Holly, Thank you for the info. on the study. It is really helpful. Oh, and I am from Illinois too, from south suburbs of Chicago. Just wondering if you are near me? You mentioned your son is on abx. Was this to put off IVIG to see if that might work first? Sorry, I am new to all of this and don't know all of the treatment options. I also may have posted twice accidentally. Sharon

Hi! I almost cried when I read your post! Thank you for sharing about your positive IVIG experience! It means so much as we are planning to have this done with Dr. K. also in 3 weeks time. My son just turned eight. Anything you can tell me about your experience with IVIG or Dr. K. would be GREATLY appreciated as we are so new to this and could use some hope from someone who has been there. SHaron