Dedee

Yes, Storch's program was wonderful. My oldest went to 2 sessions before he decided he wasn't going to participate. They were great and met with me a few more times to help me come up with a plan on how to deal with a teen age PANDAS boy in denial that he has issues with eating certain foods. My daughter who was 7 then, finished the program. She doesn't have any eating issues, but lots of other OCD issues. It was life changing for her. She really didn't have a good understanding of OCD or how to try to control it in any way. The program gave her a sense of control. We have started a local program this week to keep things fresh in her mind. I'm sure Dr. Murphy will sugest CBT. She is big on it. A local program may be fine if you get someone who is really good. The person we are using actually trained under Dr. Storch so we know she uses the same concepts. If you call down there or ask when you go see Dr. M, they are happy to give you a referal to someone in your area. That's what they did for us. They have trained so many down there that they know people almost everywhere. Even when we were just calling to try to get an appointment for an evaluation, they said if we decided not to come they would be glad to give us a referal. Everyone there is so nice and truly cares about these PANDAS kids. You may even be able to e-mail the Rothman Center and ask for a referal in your area. I bet they would give you a name. We are very happy with the person they told us about. PM me if you have any questions. Dedee

Both of my son's experienced an urge to go to the bathroom more frequently but not an increase in output. The way they described it was similiar to bladder spasms. Feeling the urge but then they go and very little urine comes out. When I spoke to Dr. M about it she explained it similiar to dcmom. Something to do with the strep antibiodies affecting the nerves giving signal to the bladder. It's been a while but there was a physiologic reason for PANDAS kids. It passed with the exacerbations. Dr. M said it was common to see it in the history of PANDAS kids. Maybe not in every exacerbation but in some. She said it actually helps with diagnosis when you see this as part of the childs symptoms. So hopefully it will pass soon. Dedee

It sounds to me like you have a good plan. I think it is important that you address it now. I don't mean to harp on it but I was given a false sense of security with my son when he was young. Of course, most folks didn't understand PANDAS back then and they kept telling me it was a phase, he will grow out of it, just a picky eater, etc... Now I know it was a PANDAS issue, most certainly an OCD issue. As you said, he actually did want to eat other things but when it came down to putting it in front of him, he just wasn't able to go through with it. Then that gave way to him feeling like a failure, feelings of sadness and so forth. That is not a normal phase. Of course, this is all hind sight. If I had done CBT with him years ago maybe I would have been able to help him. That is my biggest regret. Now he is a teenager and he struggles with the social issues of going out with his friends but can't / won't eat the things they are eating. Then he is embarressed because they say something about it. So he avoids social functions involving food in case someone might notice he isn't eating. This makes me so sad because I think he is missing out on so many "normal" teenage things. Being a PANDAS parent is so hard. Everything is gray, no black & white. Best of luck with your son.... Dedee

Well now, that would have been my oldest son 10 years ago. Fast forward to now and this one food issue is the last remaining PANDAS issue we still can't quite get rid of. Tried to get him to go through the CBT program when we were in Florida with my daughter, but being a teenager and all, he was sure he didn't need it. He is in denial and thinks he can fix it himself. His issue is that he will only eat a very limited number of foods. As you said, not a contaimination issue. He isn't worried about poison, dirt or anything else. As the counselor said in Florida it's one of the OCD's that many describe as "it just doesn't feel right". My son agreed with that, but still refused to take part in the therapy. I would suggest if you could get him in a CBT program now, that you do it. I think these things are easier to fix when they are younger. It is very stuck in my sons head. He will not eat any fruits or vegetables. The only meat he eats is turkey bacon. He eats lots of peanut butter, & drinks lots of milk. There are a couple of cereals he eats. He eats french fries, chips and cookies of course. No pizza or chicken nuggets, nothing like that. It must be a very miserable thing to live with. He has been in counseling for 2 years and we attempted the CBT but he wouldn't participate. He still takes antibiotics and is otherwise a happy, seemingly well adjusted, good kid. But if I could go back 10 years, I would have done CBT with him then before it became so engrained. We have even seen Dr. Murphy about it again (he saw her 5 years ago). She ran more tests and her only suggestion was the CBT, which of course we tried, but CBT is one of those things that they have to be willing to participate in and he was having none of it. So my guess is that the eating issue is definitely an OCD thing. Your child may not be able to describe or even understand why. Probably "it just doesn't feel right". Best of Luck.... Dedee

Are you diluting it in anything? Does it have a particular flavor? My daughter is funny about taking liquid, but if I can hide it in a drink, it may work. Also, do you get yours on line or through your doctor?

My oldest son had T&A after 4 recurrent strep infections in short period of time. ENT started him on high dose Augmentin prior to surgery and he stayed on it for several weeks after. He hasn't had strep since, although he still may react a little when one of the other kids are sick. He remains on low dose antibiotics. Over all he is doing well. Straight A student, still has some residual issues with eating a variety of foods. The T&A was key for him. It turned everything around. The antibiotics were key also I think..... Dedee

DCMOM- Just curious for my information, did your kids have episodes after having the H1N1 vaccine or after having the actual virus. I know I am not going to let my daughter have the flu vaccine in any form since the flu mist is what started this whole mess in the first place. My boys have had the shots in the past and not had a problem. However, my middle son is in an exacerbation and I worry about giving him anything right now. I do really worry about what would happen if my daughter got the flu though. She has a cold right now and has been horrible. I am hoping things get better as her physical health improves. Dedee

Regarding the "shedding" issue. I think I read that shedding only occurs with the live virus and most certainly with the flu mist. Our lives were turned upside down as well when my daughter received the flu mist last November which triggerd this entire episode. We haven't had a minutes peace in nearly a year. Dedee

Well if he is PANDAS, it is good that you have documentation of the strep infection. You should just observe his behavior and document the onset of any behavior changes or tics. It is great that you already have antibiotics. If he has a flare of behavior changes, you may need antibiotics for longer than the ten days. As prevenion, you could start motrin. Although, as bad as you hate to do it, if you are looking for the PANDAS diagnosis you need to get his true reaction to the strep and let his physician see the results. I would start the antibiotics immediately though. You may not see changes for up to two weeks after the infection. I think others have even seen it longer out. Ours was always within the week. Best of luck... Dedee

Eljmom, I detect a note of denial in your posts. You come here seeking council, but refute all suggestions as inappropriate for your child. Yet you keep coming back to hear those same opinions again. Everyone here truly cares about the suffering of PANDAS / PITANDS children and their families. All posts (including mine), are given with the best of intentions. I think somewhere behind your objection you see the truth in some of the posts. PANDAS parents do not have the luxury of denial or being paralyzed. You can only take deep breaths as you dive into your next plan of attack. You can certainly take the luxury of coming here for support, knowing that you are not alone. If there is ever a doubt get another opinion, period. Your child deserves a definitive diagnosis whether it is a yes or no. You can not put yourself in a place of second guessing. Clearly you are not at peace with your current status or you wouldn't keep coming back asking the same questions and then arguing the same issues. If those issues are so clear then they should be non-issues. You must have peace that you are doing what is best for your child. Most here are telling you that you need to take an additional path. It is clear by your actions that you think so too. Otherwise, why are we still discussing it? Dedee

I can not speak to Dr. B, although I have heard wonderful things. My daughter is a patient of Dr. M. She was very good at looking into all aspects of the immune system. My daughter has a history of two broken bones, hernia repair, & gastric reflux. Dr. M did lots of immune testing for connective tissue disorders that are also in the autoimmune family. Nothing came up positive but she still felt that my daughter could have a mild form. She said there are many different types. She ran alot of labs. Only thing she never brought up was the possibility of Lyme. Dr. M was the one who found my daughters Myco p. but never mentioned the possibility of lyme. We did end up doing IVIG using Dr. M's protocol but I brought it up. In fact I think you could say I begged for it. We weren't making progress with antibiotics and supplements and my daughter was practically home bound. So when I brought it up (while I was blubbering like a baby), she said she thought that was a reasonable next step and agreed. She just isn't one to jump into agressive therapy but if parents are seeking it, I believe she looks at it on a case by case basis. Which ever you choose, you probably can't go wrong with either of those Doctors. I am interested in your experience either way you go. Keep us informed. Best of luck. Dedee

I agree with the others about Dr. M. We traveled 13 hours to see her. However, just wanted to say that I have heard really good things about Dr. Rossingol also. So while this whole situation stinks for your family, it is great that you have some good options for physicians near by. Get in to see someone as quickly as you can. Best of luck. Dedee

We are currently treating both my son and daughter for myco p. Both have elevated IgG and IgM. Our doctoc added Rifampin to their antibiotics because he said this helped the original antibiotic work better and that Rifampin would cross the blood brain barrier. My son is on Zith but we switched my daughter to Biaxin because she didn't seem to get much from the Zith. Both also take Rifampin as well. We just tried to take my son off his antibiotic after a three month treatment. It lasted 4 days and all of his symptoms have come flooding back. I just finished sending a message to his doctor. Hopefully we can get him back on something soon. This bug really hangs on...Sick of it already....... Dedee

You have to first get evaluated for the CBT program in order to get accepted. If you wanted to see Dr. M. you could try to do both in the same visit. When you call for the appointment, tell them you are from out of town and need to do both in the same trip and they will set it up. There will be a wait. If you have any questions you can PM me. Best of luck. Dedee

I have taken my son and my daughter to Dr. M. and my daughter who was 7 at the time went through Dr. S. CBT program. I can not compare my experience with any of the other "true experts". We see someone local that is informed about PANDAS but not a specialist. Dr. M has sent her recommendations for treatment to all of our local doctors. We have been very pleased and have no complaints. As far as the CBT program, it is as good as they come. Your daughter's age is perfect. The younger ones seem to be more open to ideas and new concepts. My daughter did wonderful. The staff is wonderful. Cant say anything but great about the whole program. As far as seeing someone else after already seeing those two wonderful doctors, I guess I would ask what is it you are looking for as to which additional doctor you choose. I think all the specialist have different things to offer. Some more convential, and some more aggressive. I do understand that desire to get another take on things. Good luck in what ever you choose. Dedee

Many people see more than one specialist. In fact some have seen most all of them. If I could manage it, I would add to my list also.:-) You must do what you are comfortable with. If you got great results with antibiotics, then there is no reason not to go with that. IVIG isn't for everyone. In fact there is no guarantee that you will get good results with that either. We have used it with one child and not the other two. You may decide at some point down the line that you need it, but it sounds like right now the antibiotics are working well. You say you have two weeks worth. I would start looking for another doctor who shares your vision. Best of luck..... Dedee

If the strep antibodies are high it would be worth a try to give a month long trial of antibiotics to see if you get any improvement in symptoms. Strep may be present in different areas of the body, not just the throat. So even if you get a negative throat culture, the high strep titers still implicate a strep infection somewhere. I would personally find PANDAS docotor to get a professional opinion. If your son has seperation anxiety and tics, both of which are symptoms of PANDAS, along with elevated strep titers, this is a big red flag. He needs to be evaluated by a PANDAS specialist. I would not hesitate to find one closest to you (you may very well have to travel), and call for an appointment right away. Best of luck..... Dedee

You have already gotten great advice here. I know you must already be worn out from the fight with autism diagnosis. However, you are already armed with the strength and determination that comes with knowing you are your sons champion and clearly you are doing a great job. You have a great advantage over many in that you live close to a great PANDAS doctor. Dr. M. is awesome. We drove over 12 hours to take our daughter to see her. We also did the CBT program there with Dr. Storch and his team. My daughter also had a negative strep test and her titers were only barely elevated. Dr. M. was the one who tested her for myco p. and that was where she came up extremely high. So your son may be triggered by things other than strep. I can only remember my daughter having strep once when she was around 2. She was extremely difficult after that but we thought it was the whole terrible two's phase. So just in case it is something other than strep, you may try to get your ped to start with something like Zithromax which will cover both strep and myco p. If the strep titers are elevated, your standard strep antibiotics will probably be fine. You are doing the right thing by jumping on this quick. Stay strong, as you already know, the rewards will be worth it in the long run. Best of luck..... Dedee

eljomom- I have read some of your posts, and it is possible that I may have missed some pieces of information. I noticed in one of them you talked about your daughter having recurrent pneumonia when she was younger. My daughter is also not a "typical" PANDAS presenter although her brother is. She exacerbated last november after recieving the flu mist. We did strep titers which were only slightly elevated. My daughter did not respond to Zith either. Her immune tests were normal. Wasn't till Dr. M tested her for Myco P. that we figured it out. Her IgG and IgM for Myco p was very high. Even though many kids with myco p will respond to zith, my daughter did not have much response. Wasn't till she was switched to Biaxin that we started to see changes. Funny thing was that I had even talked to her pediatrician about all the pneumonia and asked if this was normal and she blew me off. Now I realize that she was harboring systemic myco p which explains alot of the behavior she had at that age as well. It wasn't until after the flu mist that she got completely out of control. She has been on antibiotics for about 4 months and had 2 IVIG's and finally we are seeing recovery. You may have already tested for this. If so, sorry to make you read this whole post. Just wanted you to know that even though lots of kids do great on Zith (my son as well), there are a few that will be non-responders. Most doctors love Zith because of its immune modulating effects, but if it isn't working it isn't working. I was shocked at the difference in my daughter when we switched. Anyway, Just thought I would add in my 2 cents. Best of luck.... Dedee

I pray that this brings healing for your son. We just finished our second HD IVIG for our daughter. Her PANDAS specialist always does 2 of the HD IVIGs about a month apart as her protocol. We are now one month out and started to see changes last week and now this week things are much better. We still have a way to go, but I am optimistic that we are in a healing phase. It's great that you were able to get insurance on board. We appealed 3 times and even went to the national appeals committee but there was no one with an ounce of heart anywhere for our daughter. Please keep us updated on your sons progress. Dedee

Oh godness....bless your heart. I am so sorry you are going through this. I know how badly it can wear you down. It sounds like your daughter has some definite underlying issue going on. It may be necessary to hold off on the IVIG for a couple of months so that you can get a better picture of what is happening. Kids react differently to IVIG. I haven't heard of the things you are describing coming from IVIG, but you never know. Especially with her getting it so frequently. I think it would be worth a try. It is good that you have her going to a Rheumy though. I wish I had some huge answers for you but all I have to offer is my sincere hope that things will improve soon for your daughter. It's ok to have a pity party.....there for a while, I had them on a regular basis. I know you feel like you are all alone, but you can always come here for support. We truly understand your struggles...please keep us updated on your daughters progress. Best of luck. Dedee

If it were me I would try a different antibiotic. Zith is a good alternative and works well for many. JMHO. Dedee

Yes. Many PANDAS children have a compromised immune system. I have three PANDAS / PITANDS kids. My middle son has low IgG & subclass 3's along with low IgM levels. He is always sick. We are currently working with supplements and other medications to strengthen his immune system. If this doesn't work after about 6 months we will most likely do IVIG. If you have not done an immune panel on your son you should consider it. Also, you may want to consider consulting with a PANDAS specialist who could help guide your pediatrician on antibiotic coverage for your son. If he is still getting sick with bacterial infections while on antibiotics you should consider different coverage. I would be concerned about an antibiotic that is making him sick and not protecting him. There are several options available and if this physician isn't aware of the options, you should find one that is. JMHO. Best of Luck. Dedee

My PANDAS son who had a tonsilectomy 4 years ago still has elevated strep titers. We just tested again for the first time since removing them. We tested him 6 months after removing tonsils and his AntiDnAse B was 2,700. My Ped said she had never seen one that high considering he had not had strep in little over 6 months. He has been on antibiotics for 4 years and had no strep since that time. We tested a month ago and tites came back 570. So his new doctor is changing his antibiotic. My son has some residual OCD symptoms related to his eating and we are hoping this may help with that. We will recheck in three months. I think PANDAS kids take a while to clear. Dedee

I am so glad to hear that your son is doing better. That is wonderful. I do think we may need to try more aggressive antibiotic therapy for my daughter. She seems to be improving now but still not at a rate that I would expect. I think the IVIG is working but we are no where close to where she needs to be. Could be I am expecting to much to soon. I am going to make another appointment with the LLMD but probably be three months before I can get her back in. Still considering the Lamictal but I was worried about "masking" symptoms. We need to get back into a weekly CBT program but I am having such a hard time since going back to work. Everything is crazy hectic and my husband is acting like an idiot lately. He tends to do that when things get really stressful. Why is it that the Mother has to be the one to stay strong and handle everything.....uggg...... Dedee