Dedee

Her strep titers came back elevated, but we haven't gotten the rest of the results (except OATS). Still waiting to rule out others. Those should be back any day now. We are waiting not so patiently. DCMom - When you did the IV steriods, was that at home, or did you do an outpatient sort of thing? I pray we get the rest of our results soon. It's going to be a long week-end...... Dedee

As you all probably remember, my daughter is in a major PANDAS flare and absolutely refuses to take any medication by mouth at all. We can occasionally sneak a probiotic in a milkshake or something but nothing on a regular basis or she gets suspicious. She is getting bicillin injections because we can't get her to take antibiotics. I believe she needs steriods because we arent seeing much imporvement after her antibiotic shot one week ago. We got her "OATS" test back yesterday and one of the elevated levels indicated prolonged inflamamation or chronic illness. I know there is no way we can get her to take steriods so I wondered about getting her an injection. Her other elevated levels indicated major yeast overgrowth which is no real surprise to me. We are trying desperately to get probiotics mixed in anything we can (that wont kill the probiotic) and hope she doesn't notice it. If she thinks it taste different at all she refuses. There is no trying to logic with her and explain that she will feel better. My physician says that while her brain is "sick" she is really incapable of understanding that sort of logic. I suppose so, it's just so frustrating because I know she could get better quicker with the help of some good supplements. But for now, I would be happy trying steriods as we have never tried them before and I believe she may see some results. If anyone has any experience with injectable steriods or opinions I would love to have feedback. As always, thanks so much for your support and input. Dedee

Oh yes, my daughter is big on that. I do believe it is a type of OCD behavior. She doesn't exhibit "traditional" OCD behaviors like my son did. Hers are harder to pinpoint but when you start looking at it all together you realize it is definitely OCD. She always wants to know who I love more, her or one of the other kids. She will ask which of the pets is my favorite. Then she will ask if I love her more than our cat or dog or whatever. Always wanting to know in what order I love everyone. I always try to not rank at anytime. It's a type of constant reassurance which is typical OCD. I guess OCD looks different in every child and certainly from boys to girls. She cries alot saying that everyone thinks she is stupid. Of course this isn't true, she has friends and no social problems yet. Her perception is definitely off though. Her emotions are all over the place. Very hard to handle. Glad to hear that IVIG is looking promising for you. We hope to be heading in that direction very soon. Keep us updated. Dedee

I can almost feel the relief and hope coming from your post. It is a wonderful feeling to finally feel like you are on the path to recovery and that there is someone else now on your team who actually knows more than you about your childs illness. How wonderful for your family. I can remember several years ago crying as we drove away from Dr. Murphy's office with my first PANDAS child. We had been to so many other doctors and been through years of illness with him. Then when we found her we had to wait several months to get in. I felt just like you when we left, as though I had taken this huge weight off my shoulders and placed it on her knowing all would be well. I am so happpy for you. Your daughter is so lucky to have you as a parent who will fight for her and not stop until she has the best care possible. This is a nightmare illness for parents and all to easy to give up and just listen to doctors who say this isn't real. You have been strong and it will be so rewarding for you in years to come. I am now waiting to hear back from Dr. Murphy's office for an appointment date for my daughter who is seven and has recently developed PANDAS / PITAND. It will be a long trip, but I pray we end up with a good experience as well. Can't wait to hear how things progress for you. Please keep us updated. Blessings - Dedee

Sorry I don't have time to go into the whold story, but I have three children who all have PANDAS / PITAND to some degree. The kicker is that I didn't recognize it in my 7 year old daughter because it was so different than the boys. She didn't tic as much but acted out defiantly more & I always put that down to her strong willed personality. It wasn't till she got a flu mist and within 24 hours she was refusing to write because she though it was to ugly and other OCD type behavior. Finally.....brick over my head...it all became clear as a bell. She has continued to worsen almost daily till now she is at a crisis point. Please act on your gut and what you really know is the truth. The quicker you start treatment the better she will respond. Good luck! Dedee

That is awesome news. I am very happy for you. Can you give more specifics? How much are you giving, how often, and so forth. It's great when someone posts happy news. Glad to hear / see it! Dedee

Believe me, if I could get zithromax down her throat I would. In fact we spent about 30 minutes attempting to do just that. We have begged, bribed, pleaded, demanded, disguised it, and tried to force it and nothing that resembles medicine or supplements will enter that childs body. She has a very distorted sense of medication and a true fear of swallowing it. So for now, bicillin injections is all we have. I can only pray that it will work. Thanks for everyone's help. I appreciate any input and personal experience. Dedee

Yep, I think we actually saw worse behavior and rages for a couple of days. Yesterday was a regular day, not good, just regular, definitely not better yet. I read somewhere that it could take up to two weeks to see results. I thought I would cry. I don't know how much more my poor family can take. I am praying it isn't that long for you or for us. Dedee

My daughter got her first bicillin injection on Friday. We haven't seen any results yet. She still had several rages this week-end, one lasted 40 minutes. She absolutely won't take any medicine by mouth. We have tried everything, mixing it in any and everything. When we tried to force it, she ran around the house screaming like we had put acid on her or something. It's the most frustrating thing I have ever encountered. My son has PANDAS, but I can at least treat him because he will take antibiotics and supplements. But my daughter is impossible. She has always had "issues" with medicine, but it has gotten so much worse with this flare that it is impossible to get anything in by mouth. Hence, the bicillin injection that we still haven't seen results from yet. Anyone got any personal experience? One worn out desperate mother - Dedee

I'm right there with ya girl. What I want to know is why do I have to be the one in control all the time? I have to be the one making doctor's appointments, explaining things to the kids, dealing with insurance, dealing with tantrums, rages, and fits. All the while my husband can act like an idiot when things get to hard. He knows what this is, but still says stupid things to our daughter while she is in a rage that only make things worse. He storms around the house mad and I'm wondering who the ###### are you mad at? Again, I am upset too, but I have to stay calm and deal with the situation. Many times I want to tell him to just get out and leave. I can only deal with one tantrum at a time. He is an adult right? So grow up already! Ok, I feel better now......Thanks. Dedee

Yes my daughter had this also. She was having really bad urinary tract infections so we did a voiding cystogram that showed ureteral reflux. She was about 2 years old then. She was on low dose antibiotics till around five or six. She is off now. I am sure it does do something to the gut if we don't use probiotics also. I have always had trouble getting my daughter to take any medication so trying to get anything down her other than the antibiotic was just about useless. We still try to get probiotics in when ever possible. I end up mixing it in ice cream and that sort of thing. I don't think she gets near enough. She always has stomach issues. Seems like lots of PANDAS kids do. Good Luck Dedee

I am familiar with Dr. Murphy. My son saw her and we loved her. The only reason I was hesitant is because I didn't know what her stand is on IVIG and I definitely want that as an option for my daughter. I am so glad to find someone who has seen her recently. My son saw her about five years ago. Do you know how she feels about IVIG? I would love to see her again if I thought we could get that through her. How long did it take you to get in? Thanks for responding. Dedee

Well even though my dd got a bicillin shot on Friday we still had a horrible week-end. She still seems to be in a downward spiral. She had a rage on Saturday that lated 40 minutes and then this morning she refused to go to school so I had to force her into the car and then drag her out at school. She screamed for about 20 minutes at home that she wasn't going to school and I had to chase her around the house to get her in the car. Things are definitely not better. So I am desperate to get to someone as quickly as possible. I had seen Dr. Rossignol's name on the advisory board list and he is located in Florida which may be the only state not covered in snow right now. I wondered if anyone had any experience with him as a PANDAS physician. Our house is absolute chaos right now and something has to be done soon. I'm afraid she will get so bad soon that she wont be able to go to school. I am so frightenend...... Dedee

So did your doctor indicate how often he might want your son to do the shots? I'm not sure how long it stays in the system. I guess I should look that up. Thanks for your response. Dedee

We finally got some of the lab work back on my seven year old daughter who has recently had a major PANDAS flare after receiving the Flu mist. She has had signs of PANDAS for a few years but only recently had a huge flare leaving no doubt as to her diagnosis. Her brother also has PANDAS. So she had elevated strep titers (no surprise there). Her doctor ordered Zithromax for three months. But my daughter has a huge issue with taking medications and this has gotten much worse lately. We even tried to force her last night by both my husband and I holding her down and forcing it in. After much fighting, spitting, and kicking, we stopped. She immediately jumped up and stripped her clothes off, started running around the house spitting and rubbing at her body where she thought the medicine might have touched her. She would rinse her mouth out, then walk around crying and spitting some more, wipping at her body. You would have thought we had thrown acid on her. Clearly this is more than just a child that doesn't like the taste of medicine. So based on that, we are going today to get a bicillin shot. I'm not sure what the plan is after that. I am a nurse so I could do shots at home if they would let me, but I didn't know how often they give the injections for PANDAS and how quickly do you see results. I am really desperate right now because her behavior is so severe that the entire house is turned upside down. I know you all understand that. If anyone is using bicillin or has used it, I would greatly appreciate any information you could give me on your experience. Thanks so much. Very Sad - Dedee

www.customprobiotics.com "D-Lactate Free Formula", has no dairy or strep. vsl#3 has both in it. Just wondering if you mix a powder into his drink or are you able to get him to take the capsule? We have difficulty getting our dd to take anything. If it gets in her body it has to be hidden in her food or something without her being able to taste it. We really need to get probiotics for her as well. Dedee

I have no doubt that my daughter would need to have some sort of sedation. She had to be sedated just to have her blood drawn. When it comes to anything medical she becomes absolutely hysterical. She has had a broken arm, broken leg, and hernia surgery in her seven years so she has learned that nothing good comes from hospitals or health care professionals (even though I am a nurse). So she has learned to fight like a tiger if they try to even touch her. It's not pretty. Dedee

For those of you doing the IVIG, are you doing it in an Infusion Center, Hospital, or Doctors Office? I have heard varying opinions on where it should be done. I would love to hear from the experts. Thanks. Dedee

Thank you all for the references. I tried to pull up some of the pub meds but could only get the abstract. I am also terrified for my daughter and she is only seven. I will pass on the articles that I can. Thanks so much! Dedee

I think I remember reading in an article somewhere that anorexia induced by PANDAS causes the kids to have a different perception than other children suffering from "Non-PANDAS" anorexia. Is this true or is it just that some children with PANDAS have contamination issues and loose weight because they won't eat? Does anyone have experience with this? I need articles for a professional friend of mine who works with teens and wants to make sure she understands the differences. I always send her articles on PANDAS and we were talking about eating disorders recently and I talked about how much I worry about my daughter who is recent PANDAS because she occasionally makes comments about her body. My dd is only seven so of course this completely freaks me out. Anyway, she wanted to read any articles on the PANDAS symptoms and all I could find were the ones on biochemical changes which I'm don't think is what she needed. So if anyone has any information, it would be greatly appreciated. Thanks so much! Dedee

Yes, I think the injectible bicellin is the strongest in the "penicillin" family. Though I guess if it isn't a penicillin responder it will require a more broad sprectrum antibiotic. Whew, you would think after having one or two of those injections she would be willing to take anything. Suppose we will take it one day at a time and see. Dedee

OMG! You guys are so awesome! This is just the information I was looking for. I am seriously thinking about the antibiotic injections, especially since I could actually give them myself if I needed to (I am a nurse). I just wondered how often it would be necessary. However, I truly believe that down the road we are eventually looking at IVIG. Meg's Mom - Thank you so much for taking the time to write such a detailed explanation. What a super process and the scripting is perfect. I am in awe of the support I have always received from the forum. The parents here are the best and most caring people I have ever come across. I am so anxious to get some labs (supposed to do that Wednesday). I hope the weather holds out and we can make the appointment this week. I am really concerned that she has some hiddent strep somewhere even though her throat swab was negative a couple weeks ago. Her symptoms are unrelenting and her finger movements get worse by the day. If it weren't for this constant finger thing I wouldn't worry. When I looked it up on line, she looks exactly like the SC folks. And she does it almost constantly except when she is really relaxed like resting in a chair watching TV. If she starts to talk or get up amd move around the fingers start up immediately. It is really freaky. I got some good video of it on my cell phone this week-end when she didn't know I was doing it. Then when I watched it back I started to cry. Since it only shows her hands and not her face I was going to try to insert it into this post but I doubt I can figure out how. I will try but I'm a little challenged in that area. So everyone pray that we get to our apoointment this week so we can start our process. Also, I really appreciate personal opinions / experiences of those of you who don't live near local PANDAS experts. How have you done your travel / consults? Who are you seeing and how many times have you gone/ Where did you get the IVIG? Trying to look ahead and figure what we will do with the other two kids. Would we need to fly or drive? Our hospital bills are already out the roof because she just had an ER visit then emergency hernia surgery (she had a twisted hernia on new years. So of course, just like everyone else, we are worried about cost, but determined to do what we have to do no matter what. Again, thank you all so very much for your kindness. I pray that we all find a peaceful end to the journey soon. With great appreciation - Dedee

Thank you so much for posting this topic. YES, my daughter does wonderful in school, makes good grades, does not act out there or when she stays with my mother or sister. Of course, she is very quiet, won't talk to anyone at my sister's house and then when we get home the first thing sets her off and there we go. The worst part about it is that my husband uses that to say that she can't be PANDAS because she knows how to act every where else but she refuses to do it at home. He is clearly a black and white thinker. No room for gray. It adds so much more stress to the situation. He can't understand that this is not a "normal" child. I think once you let go of that you can start to accept other concepts. The fact that they hold it all in till they are in a "safe place". That she is actually withdrawn when she is other places. It's so obvious to me. My mother and sister say she barely even speaks when she is at their house. Even the baby sitter says she will only talk to her children but not to the adults. This is not the behavior of a "normal" child. The other thing is that she hasn't always been this way. I can remember several years back when my sister would keep her she would say my daughter would talk her head off in the car. Well, we have clearly regressed since then. The other problem is that my oldest son who has had PANDAS for nine years never had rages. He suffered his OCD, anxiety, tics, and depression quietly. So the rages, defiance, and violent behavior is new to us. My husband just has a hard time handling it. Of course I do too, who wouldn't. We are clearly in a crisis mode here and just trying to get through day to day till we have our game plan for treatment. Actually, my family handles it pretty well. Most of them are in the health care profession. It's my husband I need to get on board. He keeps expecting her to respond reasonably. Problem is, you can't be reasonable when your brain is sick. I guess I don't need to convince you all do I? Thanks so much for the support. Sorry to ramble. Dedee

Wow, thanks for the explanation on ERP. That sounds like an awesome process that takes complete commitment and perseverance. PANDAS parents have to wear many hats. We are parents, scientist, doctors, nurses, psychiatrist, psychologist, teachers....where does it end? Oops, sorry, I almost started to whine. We have thought of going back to Dr. Murphy, but she isn't at the Shands Clinic anymore. I think she is still in Florida but not sure where, and I don't know if she is still seeing patients or only doing research. Also, I want to make sure we have the option for IVIG if my daughter is a candidate and I'm not sure what her stand is on that. I would think she would be in favor, because she is involved in all the studies on PANDAS. I just haven't heard for sure. Maybe I am jumping the gun by already thinking along the lines of IVIG. It's just that my daughter is only seven and I really want to be aggressive on getting this thing under control as quickly as possible. I guess I feel guilty that I let things go as long as I did with my son before I put my foot down and started doing my own research. Also, when we were dealing with him they were only just starting to talk about IVIG and only the worst of the worst cases could even be considered. Even to get antibiotics was a huge success (still is sometimes). Things have come a long way in nine years. So, I am still weighing my options and waiting to go for labs next week. Trying to decide where we will go from there...... Dedee

I don't know if I have answers for you, but gosh I am so sorry that your family is going through this. I don't think there is a right or wrong way to get through the crisis times. Just surviving one day at a time is considered sucess. I would definitely try to get another steriod burst. Hang in there. You are doing a great job for your child. You have already found a wonderful PANDAS doctor. So don't beat yourself up if you wear out occasionally. It's a crazy illness, and it drives us all over the edge at times. I will pray for your family. Let us know how you all are doing. Dedee