Dedee

You can but it won't tell you if they have strep in the throat. The nose swab might give you information about possible sinus strep. You can even swab their bottom if you want to check for peri-anal strep. (Sorry, don't mean to be gross). If you are checking for strep throat, you need to get back to the posterior portion of the tonsil and get both sides.

I don't want to be discouraging. Keep trying. We were denied over and over. Our physician even did a peer to peer review. That was denied also. We went to the National Appeals Committee (my husband is a lawyer)......Denied. It was a very stressful time for us. Problem is that the plan has a statement that says that IVIG is not used for PANDAS and my daughter already had PANS in her chart. Now if you can get it in under a diagnosis like CVID or something else you have a chance. My doctor is currently working on making a clinical case for CVID for us. If we can prove that then they will most likely approve it. That would be my recommendation. Also, our integrative medicine practitioner says when you show letters by three different physicians saying that the IVIG would be beneficial, it increases your chances. Something about liability of withholding treatment repeatedly deamed necessary. So that would be like your pediatrician, neurologist, and PANS specialist for instance. (Just throwing specialities around). I hope your are able to get this through. Best of luck. Dedee

Thank you so much for your reply. That does make me feel better. While we are going primarily for my daughter, we are also taking my son who is a milder case of PANS. He has terrible allergies and has a constant stuffy nose and sneezing. So maybe it will be helpful for him. I appreciate your input. Dedee

You mentioned Mycoplasma. Were his Mycoplasma titers elevated?

Yes, they aren't hard to use, but I am a nurse so I am used to doing that sort of thing. It has very simple step by step instructions. Others may use a different brand. Our box lasted a while. This is only the second time I ordered. Dedee

I just re-ordered mine. I think with shipping it was around $40. That is for a box of 25. Here is the link. http://www.docsavings.com/mm5/merchant.mvc?Screen=CTGY&Store_Code=D&Category_Code=rstrep2 Dedee

We use vitacost.com. Thanks for the thread. Always looking for ways to save. Dedee

Doing a happy dance for you now......Antibiotics.....the new antipsychotic! (My new moto!) So happy for you and your son! Dedee

Thanks Jtsmama, I sent you a PM. We are set up for June. Dedee

Glad to hear your happy news! Thanks for checking back in to update us. It's great to hear good news! Dedee

I agree with DCmom. While I am a believer of "treating the root, not the fruit" concept, there is much to be said about "accomodating" OCD. It's very hard as parent's, to come up with a plan on our own to know exactly how to react and be supportive but not accomodating. There is a fine line there. That's why DCmom's idea about getting in to see Dr. Storch and working with his program should be a high priority (just my opinion). I believe you are in good hands with Dr. M. We have used her for years. Right now your son doesn't sound extreme but if you continue to accomodate (reinforce) his OCD, it will get worse. As parents, we don't do this on a conscience level of course. We love our kids and we are trying to do our best to alieve their anxiety. Problem is they must learn to manage that anxiety on their own and most times that means getting an individualized plan. The CBT program at USF has years of experience dealing with PANS / PANDAS children with OCD and they know exactly what they are doing. So you can try some advil as others said. Many times that helps. Maybe even some basic supplements such as fish oil, and magnesium. Also, not sure if this will help or not, but last Friday I re-scheduled my son's appointment with Dr. M. He was scheduled to go in mid April. It would have been a first time visit for him (my other 2 kids have seen her). Wonder if they have filled that appointment yet? You could always call and see. Just a thought. Best of luck. Dedee

Yes, my son took it for about 6 months. I can't remember the dose right now. I couldn't tell any difference.

I don't know Dr. T. We have never used him. I have heard wonderful things. But it sounds like you are looking for someone to help you feel better about giving your child "medicine", specifically antibiotics. So I will give you my opinion, hopefully not to offend in any way.......Your child's brain is under attack. It is affecting his quality of life and the quality of your family life. I suspect you realize (or you wouldn't be here asking), that your child does indeed need the antibiotics. His response was positive, as you said, giving you your little boy back. No one likes the idea of giving their kids a bunch of unnecessary medication or supplements. But, unnecessary is the key word here. If your child is PANS and does respond positively on antibiotics then the medication is very necessary. I think for some reason some people view taking medication as a "weakness". They love to display the fact that they NEVER give their kids medications or take it themselves. Well, great for them. I suspect they don't live in the same situation that most of us do. Personally, I have nothing to prove in that regard. All I want is to keep my child functioning at his / her highest potential and for them to be happy. If that means antibiotics and a few supplements for a few years, then so be it. Most of the PANS / PANDAS specialist are very busy. IF you are ready and accepting of treatment when you go then I imagine you will get exactly what you need from Dr. T. Only you can decide in your heart what you think your family is ready for based on your personal experience. You are his Mother and therefore the best to judge what your son needs. I'm sure you will make the right decision what ever it may be. Best of luck. Dedee

I only have a minute, but could write you a book on this one. Most likely your grandson does have OCD. OCD in children is very tricky. Most of the time we expect to see fears of germs, handwashing, etc as signs of OCD, but it is so much more in children. My son is a "typical" OCDer. My daughter....very different, more like what you describe in your grandson. But still OCD non-the-less. A rigid personality, very inflexible, raging at the drop of a hat, can't make simple decisions, seperation anxiety (usually an obsessive need to be with a parent)....these are all classic PANS and very much OCD symptoms. When we finally took my daughter in to be evaluated for PANS I was shocked at what the doctors said. They said she fit the "typical" child presentation of OCD. I never would have believed it. You really have to look very closely for the reasons behind the behavior before you can see the underlying OCD. All we tend to focus on is the behavior, but believe me.....OCD lurks behind it. The child does not have the ability to articulate how they are feeling when they are young, but with help they can identify it and learn to control it. Since my daughter has been doing CBT, I have learned so many things about how she thinks and different OCD thoughts she has that I never would have imagined. They learn to hide things at an early age because they sense that it isn't normal, that only increases their anxiety. My daughter had imaginary lines in the house that she couldn't cross, she had to go through doors a certain way, & count to herself. I never had any idea of these things until only a few months ago. Those are clearly OCD thoughts & behaviors, but she never talked about it or even identified it herself until she started CBT. So, basically I just wanted to say that I think you do have a pretty classic sounding case of PANS. Certainly enough to seek professional consultation. I urge you to have your grandson's parents get him in with a PANS specialist as soon as possible. Best of luck to your family. Dedee

Don't get discouraged. Myco P. is a horrible bug and takes months to years to clear. We have been fighting it (and strep) for more than a year. I have nothing bad to say about Dr. M. but while she did diagnose our daughters Myco p. we received the antibiotic treatment from an integrative medicine practitioner who is local based on the labs. Find someone who is comfortable with co-infections. Most likely that is going to be a LLMD or maybe even Dr. B or someone like that. You are going to need long term antibiotics and testing for other infections. You are over one big hurdle and that is knowing what you are dealing with. As soon as a knowledgable doctor sees the positive Myco P results they will get you on a workable plan. Get an appointment ASAP. I think you have several good options in your area. I mentioned the Melbourne group because my Integrative Medicine practitioner here speaks so highly of them and says one or two of those doctors have PANS and / or Autistic children so they are great. Keep us updated. Best of luck. Dedee

Thanks so much Airial95. I always look forward to your feedback since you have so much experience with the USF group. I'm going to try to stay positive. My husband has suggested that we see if we can get in and do another week of CBT with the therapist that has been seeing my daughter while we are there. I do love that idea because this woman is so wonderful with my daughter and we haven't had much luck with the person we were using local. So that would make it worth the trip. I think I am going to go ahead and see if the Integrative Medicine practitioner will do Lyme testing on my daughter in the mean time. I know she may not be very good at interpreting the results, but it would give me an idea of where we need to go next. I made the appointment for the blood draw....we go next Tuesday. That's always something to look forward to...... Dedee

Well, I guees it looks like we will be doing the USF Immunology Dept instead of Dr. B for now. My husband is set on the idea of staying with USF for now and also he wouldn't be able to get off work to go with me for the long drive and appt with Dr. B. It makes me sad because I think we would get more answers and have a more productive trip going to see Dr. B. But, I feel like I need to give a little on this issue for my husbands sake. He has come so far, and agreed to do many things for me that I know he didn't feel comfortable with, and I think it's only fair that I should be open to his opinions too. It's just really hard when I feel in my heart that Dr. B would be a better fit. I'm going to pray really hard that the USF Immunologist will be helpful. Thanks to everyone for your help. Dedee

You might try Dr. Bradstreet and his group in Melbourne. I have heard really good things about them. Best of luck. Dedee

I don't have much time today, but I could write you a book on the things we have done that haven't worked. But the key for my daughter seems to be getting to be around me. So that is why the therapist recommends removing me from the scene as soon as it becomes violent. The only way to do that is to put her in her room. She can stay with me if she is only crying, but as soon as she hits or throws, then she must immediately go to her room. As you said, when we start to carry her to her room, she starts to beg and plead that she will stop, etc.. Ignore that. Take her anyway, with only one statement....when you calm down you can come back out. I have to physically carry my daughter to her room and pull her off the door knob sometimes to get out. However, now that my husband has been through the CBT program and he is on board with the same plan, things are going much better. She calms down much quicker in her room and the violence has decreased. I know it isn't feasible for everyone, but the most helpful thing for us has been the CBT therapy. The people at Rothman are so good with these kids and are right on target with how to deal with all situations. They understand what drives the behavior (OCD), and so their recommendations are more applicable to the situation. Plus you get an individualized plan based on your childs issues, behaviors, and responses. We have three PANS kids, but only one that rages. The raging is so disruptive to the entire family and hinders progress for everyone. For me, it's worth anything to get that under control. We are still a work in progress, but at least we are making progress. Dedee

Yes, I have the same issue. My daughter will not let go of me and sometimes will hit me or squeeze me but still chases me around the house. I will give you our experience and the advice of our therapist from the CBT program. First we reversed the locks on her bedroom door. Like you said, she won't stay in her room without being made too. The rules are that while she is raging, she can be in the room with me only as long as she isn't hitting or hurting me or as long as she isn't throwing things. If she does any of that then she immediately must go to her room. We have to lock her in there and then just wait out the fury. We don't give her any attention or verbal reinforcement. She knows she can come out when she is calm. I have had to take all the wire cloths hangers out of her closet because she learned to pick the lock with them. Once she gets quiet and calm, I immediately go to her door and tell her how nice it sounds that she is quiet and ask if she is ready to come out. This is a very hard tactic, because while she is raging in her room she bangs on the door and throws herself on the door and it sounds like she is about to rip the door off the hinges. It is mostly hard for my husband. The most important thing is to ignore all of that and only allow her access to you when she is calm. After a few times it really begins to work and the violence decreases. Consistency is key. I am so sorry you are experiencing this. For us, rages have been the hardest thing to deal with. This technique has helped us though. Let me know how things work out. Best of luck. Dedee

Well we made it back from our spring break trip to Florida. We went down for a week to do a short CBT refresher at Rothman Center. Also, had a follow up appointment for my daughter with Dr. M. It was an extremely productive week. Thanks to everyone for your prayers and positive thoughts. We had both my middle son and my daughter do the CBT, and it was wonderful as usual. They have such a great program and it was awesome for my son who has never been before. My daughter was able to get back into the grove (so to speak), and mostly, my husband (who wasnt able to go before), got some great information from the therapist. I talked to Dr. M. extensively about my daughter not progressing and asked her opinion on that. She said that most people dont give enough credit to the fact that these kids wont get better as long as they are exposed to others who have strep. Of course, she said we need to continue working on the Myco p. also. So, she did a strep test on the entire family. Quite surprisingly, both of my sons and myself came back positive! Odd thing is that both of my boys are on antibiotics. My oldest son takes amoxicillin, and my middle son takes Zithromax. So her suggestion was to send the culture off for sensitivity to make sure this strain isnt Zith resistant and then they will call us back this week and make a recommendation for antibiotics. She really feels this is why my daughter isnt improving. My daughter is currently on Biaxin and they did a culture on her but could only get one so they sent it off for a culture and sensitivity instead of a rapid strep so Im not sure if she was positive while on antibiotics or not. She also ordered more labs. One of the things she ordered was MTHFR testing. My daughter never has had high strep titers, and she said that for whatever reason, many of the kids that dont mount a high immune response are often MTHFR positive. My daughter does however have high Myco P titers so Im not sure how that plays into the whole immune response theory. We will go sometime this week to get the labs drawn since they dont actually draw them at her office. One last thing she suggested was for us to have my daughter see their Immunologist. I told her we had an appointment to see Dr. B in a couple weeks. She didnt discourage it but just said she likes to use their immunology department and that she felt we could get the same thing there as we could with Dr. B. I mentioned that I was looking at testing for more / different infections and she only discussed clearing the strep and how important it is to keep her environment strep free. Im sure there is a lot of truth in that. She did speak highly of Dr. B but said that many people go there to get IVIG and we already have access to that. My husband really wants to go to the Immunologist there at USF instead of Dr B, I think because he just really likes USF and has a comfort level there. Dr. M. says they are very accustomed to working with PANS patients. We would probably be able to get in early June. So, that is the summary of our trip. Overall, I am very pleased and have come back with renewed hope for improvement. She is doing better managing her OCD with the skills from the CBT program. The trick there is just keeping it up and staying firm as the parent. Always difficult in the face of rages. I am still back and forth on what to do about the Immunology appointment. As always, I welcome any input, opinions, experiences, etc….. Dedee

We are leaving early in the morning for our long drive to Florida to get a one week refresher CBT for my daughter and son. For those who don't remember, my daughter was at Rothman Center for 3 weeks for their Intensive CBT program last summer. Since she has been doing so poorly the past few months, she has lost many of the skills she learned to cope with her OCD. Since we are on spring break we decided to just take a ride (13 hrs....ugg)back down for another visit. Of course, we will also have a follow up with Dr. M. while we are there. Maybe she can offer some words of wisdom. We are also taking my middle son for CBT. This will be his first experience, but he isn't as severe as my daughter so I think one week should at least get us started with him. We are going to try to get him in with Dr. M also while we are there. They are trying to work him in as a new patient but haven't had luck yet. She said once we were there they would probably fit us in somewhere during the week. We were able to get my daughter in because she has been there a few times before. The ride down is always a bit stressful with three kids and a tense husband at the wheel. I'm trying to make it seem more like a vacation, talking about the beach and so forth. The younger kids are excited. My teenager isn't buying it. Usually the ride goes about as well as however my daughter is feeling. If she is miserable, everybody is miserable. She has been know to rage and scream for up to an hour while riding in the car. Very stressful for the driver. I am armed with movies, a borrowed DVD, nintendo's, I-pods, coloring books, paper dolls, cross word puzzles, everything I can think of to distract her. I can hardly ever get her to sleep in the car. So, anyway, please pray for a safe stress free trip for my family. Maybe we will come back with some answers or at least some new coping skills. Dedee

Only have a minute here. I understand you dont have much money. That is such a horrible situation. You dont have to fly. Awful to say but it may be a road trip for your family. We leave in the morning for a 13 hour drive to our specialist. Believe me, it's no fun to drive 13 hrs with 3 PANS kids in the car. But we do this about 3 times a year. It sucks...but it's what you have to do. Many out of state specialist will take your insurance. You just have to suffer the drive. You will do it for your child. You must. Dedee

Wow, that is so interesting. Just wondering where in the heck that strep is hiding! Can't wait to hear from your next appointment! We are heading your way tomorrow. My kids are on spring break next week so we are coming down for a one week CBT refresher for my daughter and my middle son will be doing his first week. We will also be following up with Dr. M. while we are there. Going to ask her opinion about T&A for my daughter. She doesn't get strep often but I think she is most likely a carrier. She got per-anal strep while on Zith and then had a postitive throat swab a day after coming off of Augmentin. She never really has high titers. They are only slightly elevated at any time. She is still positive for myco p. and on Biaxin. But we are really stuck and not getting resolution. So, looking forward to spring break in sunny Florida. Please post as soon as you have your appointment. I'm so interested to hear. Dedee

As with many of the other posts, my daughter didn't fit the exact criteria either. There is still much to be learned regarding this illness. I have 3 PANS children and only one of them would I have considered an "overnight" case. That was my oldest child. My middle child was a more mild case so really not a "dramatic" onset. But with each successive episode it would get worse. Then my daughter.....Dr. M. believes she was having "mini episodes" probably in her toddler years. We always believed her to be a very stubborn, strong willed child. She was also sick alot. Had pneumonia several times, UTI's, ear infections, etc.. Her big episode that made us sit up and take notice was Nov 2011 after the flu mist. 24 hours later she refused to do her homework because she thought her handwriting was so bad and her normal stubborn behavior escalated X10. At that point things became apparent and there was no way to deny it any longer. She was eventually diagnosed with Myco p. and probably had it for years due to all the pneumonia she had since early childhood. So, yes, the "acute onset" does worry me some. If I didn't have previous PANS knowledge, I would have thought this was a personality trait and probably would have let someone place a bipolar label on her or something. It's hard to define acute onset during toddler years when demanding and tantrums are a part of every day life. That's why it is so important not to let someone label your child after spending only 15 minutes with them. This is a really important issue with this disease. Best of luck.... Dedee