Doug

Dr K ROCKS!!!! If you can get to him do it!! we just had it done Feb 12&13 and I have seen some good signs but I am holding my breathe because I know the up's and down's of PANDAS. My daughter is 5

A few kids don't tolerate them well. You could try a different strain of probiotic. Also see if the one you are using has a milk base. If it does, try one without. Make sure the probiotic dont have strep in the ingredient's

Thanks for the good advice about the Tamiflu, I did leave Dr. K a voicemail and a email. He hasn't responded yet. I hope this didn't throw off the IVIG at all. Anyone with thoughts ?

Well we took our daughter to the Clinic tonight and the did a rapid test for Influenza A and it came back posative. We are starting to give her Tamiflu and hoping the PANDAS symptoms stay away. I guess this one got past the IVIG. I pray she is going to be okay she has had a rough few weeks. I think Dad is on the brink of jumping off a cliff.. Its a good thing I don't drink, maybe I need to start.. Just Kidding.

Hello Everyone, Lauren just had her IVIG Infusions on last Thursday and Friday, and now today she has a sore throat and a fever. She is on Augmentin once a day and she doesnt have any OCD Going on. I thought IVIG controlled most viral infections am I missing something or did she just catch a cold virus. Please respond if you have any insight. Doug

Thank you for the kind remarks., Lauren is doing better today she still has a slight headache and tummy ache. We are flying back to CO on Monday. I am expecting good results, we are starting daily Augmentin as well. We will keep ya all posted. Take Care, Doug

Hello everyone, we survived the IVIG, it was a long night last night. Lauren was a little sick last night but all in all it was no worse the flu. Her fever is almost gone this morning and we are going to try to go eat something at the Hotel. I pray we get good results we will keep you posted. God Bless. -Doug

I have nothing of clinical value to add. I would only add that I think everything you and your daughter (and other family members) are feeling are legitimate and totally understandable given the circumstances. The emotional lability piece of my son's illness is exhausting...and that's just for me, I can't imagine how it feels to be so emotionally fragile from his perspective. Good luck tomorrow, you know she is in good hands. We didn't feel the earthquake although we heard about it on the News.

Hello everyone, we made it to Chicago, it was a adventure due to the adverse weather. We are anxious and nervous about the IVIG infusions. Mostly we are concerned about the side effects, our little girl is a major drama queen and doesn't handle illness and pain well. He told us they will give her Benadryl in the morning and Tylenol or Ibuprofen if needed. We are pumping the fluid down her and are hopeing for the best. Does anyone have any insight from their expeirence's, I guess I am just a worried Dad. I want it to go as smooth and painless as possible. Thanks, Doug

Doug, I know how you feel, sometimes when things are going bad, we are up for anything to help our kids. and when things are good, we don't want to mess with it. I can't give any advice here, because I have not had these treatments for my child, so don't think it would be fair for me to advise. One thing that stands out for me here, tho, and I feel I have to point this out, and I'm not directing this totally at you Doug, but for all of us, ...sometimes these symptoms, wether it be PANDAS, tics, OCD, etc.....I think some, mostly who are new to seeing these type symptoms, may be under the impression that if a child has some symtom,that it is going to be that way forever. That is not always the case, and I've seen this many times, being a frequent poster on the TS board. Symptoms do wax and wane even without intervention, or jcan be helped with natural intervention, could be diet, could be alleviation of stress, whatever......I guess what I want to point out is that if Doug's child had had the IVIG treatment let's say Saturday,and as he reports she is so much better today, then you would have been convinced it was the IVIG that made her better, and everyone here could come to that conclusion. so good to be optimistic, but realistic as well. How long has your daughter had ocd issues? She woke up with PANDAS in November of 2008, following a Non -Strep throat infection, we did nothing and it eventually went away. Then last July it appeared following another throat infection, and this time it hasn't ever went away 100% it waned down to about 90-95 % better and then it re-appeared last week with a vengance, but it has settled down again in just a few days. I guess my only worry is if the IVIG makes it worse due to the increased stress. Now a few days ago I would have flown out that night to try anything. - Doug Faith

Is Dr. K's, 90% cure rate over exagerated? He says with my daughters age and IG levels she is a prime canidate. Thanks, Doug

Okay, I am totaly confused last Thursday and Friday our daughter was so OCD she was insane, one terrible intrusive thought after another, and today she is almost back to normal. We are 2nd guessing ourselves on the IVIG, but were still going through it. I do believe this time it was brought on by stress. The last two were from a fever and infection. I hope we are making the right decision, I hate to put her through so much stress and have it not work. If she doesn't have PANDAS, I have no idea what she has. Dr. K said it couldn't be anything but PANDAS based on her symptoms and a collilation with a infection. Well enough of my gabbing. Take Care, Doug

Hello everyone, thanks for the good advice and the words of encouragment. It a shame that everyone's insurance company don't realize this as a real illness with real treatment. Does Dr. K provide the pre / post medication? We will pump tons of fluid's down her. I wil keep everyone posted on how it goes. Lauren is a lot calmer yesterday and today, she cried for 48 straght hours with intrusive thoughts coming into her head every minute or two. This is a evil illness, and I pray all of our kids will recover. Please email or call with any questions. -Doug

Hello Lauren is doing somewhat better today, yesterday I was ready to admit her into the Physc ward, along with me... We had a phone consulation with Dr. K yesterday and he told us with such confidence that she needs IVIG, we are flying to Chicago this week and are having the infusion done on Thursday and Friday., We have BCBS insurance and I know they won't pay, it's a worry but at this point money is not my biggest worry. I have read a lot about the headaches and vomiting, does anyone have the correct formual of how much water you need before , during and after. or any other words of wisdom. We are very scared and worried, but I know it's time to do something. I pray we get good results. I guess only time will tell. -Doug

Thanks for the words of encouragement My wife and I are a mess, I have been so upset I don't kow what to do.. I am not good at expressing myself but It is just super hard as you know. I pray this doesn't stay so extreme for very long. Take Care, Doug

Hello Everyone, OMG things seemed to be going so well, I say she was 95% Good. Lauren has been sleeping with us for the past few months and we thought we could get her into her own bed. We tried this last Sunday Night and she cried but eventually went to sleep. The next day she seemed sad and angry about us making her sleep in her own bed, and that evening it exploded into major stress and crying and we told her she could sleep with us again, but now it mutated into major PANDAS symptoms, tons of intrusive thoughts, like she doesn't love us but she know she does. Huge seperation anxiety, and fears of eating she somehow has linked eating to giving her bad thoughts. I didn't know this could all be brought on by stress as well. Anyway it's been a long few days, we have a phone consultation with Dr. K tomorrow afternoon and we are probably going to start prednisone and then seek IVIG ASAP. I am totally sad over this, I kills me to see her this way. It is so weird how she was totally fine one day and a complete wreck the next. I am open to any advice. God Bless, Doug

Hello everyone, we took Lauren to her ENT Doctor today, she had ear tubes put in her ears 3 years ago. She has only 1 tube in now and just sitting on the ear drum and he feels it will work its way out. We asked him about PANDAS and explained our daughters situation and symptoms, he stated he has never seen PANDAS and doesn't know much about it., but if you want to avoid getting strep you should take out the Tonsils and thats what he would do if it was his kid. What are your thoughts on this? Lauren has done real good and has only had a few minor symptoms we are planning a consultation with Dr. K on Febuary 5th and we have IVIG set up in Denver with Dr. Tom Smith if he feels necessary. The Most puzzling piece is that Lauren has never tested posative for Strep and her Titers have always been low. We have run every blood test in the book, but are still waiting the results of the Prevnar Vaccine test. " The lab screwed it up " everthing has come back normal. All we know is she had two major exacberations of symptoms that lasted months immdediatley following a fever and a sore throat. ( That appears to be Viral driven, they called it a Coxsackie type virus but it was never cultured.) Any Advice or is there something missing. Thanks, Doug

We buy( yum yums) at the vitamin cottage my Daughter LOVES them,they are chewable and in the cold section DR T said that they were ok to use.

Hello everyone, sorry I haven't posted in a few. ( Santa brought us a new computer.) First. Lauren is doing 99% better, the tics are gone and the seperation anxiety has diminished. We had a phone consultaion with Dr. T a few weeks ago, we are running all the tests he recomends. " We have allready ran many, so far all her blood work has come back normal" We are still waiting the results from a few tests.. " Epstein Bar, & Lmyes " He is having us start a propholactic dose of Azithromycin we are giving her 1tsb two times a week. ( She is 37lbs) We are also giving her probiotics. My question is should we be doing anything else? My biggest worry is that this is not Strep drivin and a unknown virus might bring this on. Anyway I look forward to hearing from you all. Happy New Year and God Bless. -Doug Patrick

Thank you so much for this information

Thanks so much for your story and encouring words. We are scheduling a phone consultation with Dr. T. in New York soon, and we will proceed with IVIG or Antibiotics. Right now our daughter is 95% Good. But we are keeping her in a bubble until we get treatment. Thanks, Doug

Hello, thanks for the follow up. The CDC recomenneds two if under the age of 9. We may just go with one. Take Care, Doug

Hello Everyone, thanks so much for all the responses to my first post. This is a very informative site. We just received the resluts from the blood work and everything appears okay. ( I haven't actually seen it but our Dr. emailed us this news ) Now we have 3 options as i see it. 1. Do nothing, because Lauren is actually doing good. 2. Try Augmentin. 2. Seek IVIG while its still early in her diagnosis. Any thoughts? And any thoughts on Influenza Shots, Lauren received both a seasonal shot and H1N1 and did okay, we thought mabye she was a little more needy, for a few days. I am worried about the 2nd H1N1 shot because it may have a more profound immune response? Any thoughts on this. Take Care , Doug Patrick

Hi Faith, it started as a cold then a fever and sore throat. Then she woke up acting bizzare about 3 days after the fever left. I didn't think much of it the first day then I thought what the heck is wrong with Lauren. " She was 4 " then I google seached OCD following a throat infection and PANDAS came up. After reading it I thought bingo.. Everyone was sceptical except me, then it slowly wanned down and I thought I was wrong. Then last July it came back at the same time as a fever and sore throat. " again no posative strep" we did Azithromycin for 5-6 weeks twice a week. She has been on nothing since thin and symtoms come and go and seem to be brought on by stress, primaraly being away from mom. We decidied to get the blood work done and our Dr., is on board with us. We wil probably seek IVIG and then antibiotics were not sure yet. The ony Doctor we have seen so far is her pediatric Dr. I am not sure all the blood tests they ran this time, I will find out next week and let you know. Thanks so much for your advice and am a very worried Daddy who wants his little girl to be okay. I hope this see's you well. Take Care, Doug