Jennskids

I am so sorry. I thought I had already replied again but I went and looked back and I don't see what I wrote. I talked to my husband again and I told him about the study that just opened up. He said that we will go wherever and go to whomever we need to get our daughter taken care of if she continues to backslide. We have had 3 great days with her so I am going to see what she does over the weekend and I am going to try and do a mommy daughter day out to really get to sit and talk with her and see if she is struggling with some of the thoughts again. I am also going to call one of the Drs. on the East and see what the wait time is for appointments. My husband still insists on a face to face meeting with the Dr and we have enough airline miles to do it. So....now I am breathing a sigh of relief knowing that we are on the same page and I can get my daughter help without fighting not only the medical community but also my husband. It is a huge weight off of my shoulders. Thank you again for your support. We are also going to a child Psychologist to give her some ideas on how to deal with some of these thoughts and actions when they do come about. Based on what I am reading it sounds like many of your children have had repeated bouts of this and I thought if she could recognize the feelings and address them with me as soon as possible that then we could get her the medication/treatment she needs if this comes up again. Does that sound reasonable?

Just got back home from a pretty busy day. I have a question for MichaelTampa's post. I guess I don't really understand what a neurologist does and why I wouldn't go see them. Do they prescribe like a psychiatrist would? Both my pediatrician and the immunologist that I spoke with said "IF" (they were big on thier if's) it is PANDAS that is who they would send me to. Is that just another mistep that Dr's are taking with this disease? I had called the Neurologist this morning(before I checked here) and they are going to get back to me tomorrow. I did speak with Dr. T and he was great! My DH is insisting on the local route first but I do like the idea of a deadline and setting up an appointment for the future. My husband has never seen the tantrums and my daughter is still at a great baseline right now so he has a hard time taking this to the next level. He did see the other behaviors when she was doing them before the abx. I will also look into the idea of the study for IVIG. I don't know if we are there yet. My daughter is doing great this afternoon. Fighting with her brother and generally doing normal stuff. :-) Phew. I will take it for now. I have been on edge all day waiting for her to come home and was afraid it would be worse.

I don't really know what else to do. I wrote about 10 days ago about my daughter. She was having OCD behaviors, tested positive for strep, got antibiotics, and was doing better two days after starting meds. I asked for advice and got great ideas here. But, after talking to my husband we decided to try and stay with local Drs(he is incredibly uncomfortable working with someone we have never met). I have met or talked with about 4 Drs in the area and they all said they either don't believe in it or don't believe that this is what is going on with my daughter. They can't see the tie. There is one that said she believed in it(an immunologist) but that she will not treat for it and that I need to go to a neurologist and gave me a name. I just want someone to keep her on antibiotics. I also tried to make an appointment with the local Dr. that was recommended to me from someone on here and he has a two month wait. So now she has been off of antibiotics and she shoved a table across the room in a tantrum tonight and went back to telling me how horrible she is and about all of the awful(to her) thoughts she is having. She has also started to spell half of the words she says and told me she doesn't understand why she is doing this. What do I do next? Should I call the Neurologist. Wait a month for the local Dr that has helped one of the kids here or push my husbands to change his mind and go out of state for help? She has been great for the last week and a half. The hand washing went from 30-40 times a day to 3 times a day and not one tantrum. I don't see the handwashing increasing at all right now so maybe I am just being too hypersensitive to a normal 9 year old tantrum. Do 9 year olds have tantrums? Her twin does not and I don't remember her older brother having them. We ended up having a very nice night and played games and goofed off tonight and all seemed normal after the blowup so maybe I am overreacting and I need to wait this out? Sorry for the rambling post. You have all been very helpful.

Thank you again. I was feeling a little deflated this afternoon. My husband and I feel like this is a very reasonable path to follow right now and it really makes sense. We figure that if we are wrong and our daughter does have OCD it will still be there, the meds and therapies will still be there and the choice to treat it as such will still be there. BUT...what we are afraid of is not following this path and ending up with a daughter who continues to get worse with PANDAS because we didn't follow this up. As you all know it is horrible to see the pain (inside for my dd) and not be able to do anything. She looks great today! She was happy, playing and while she did come up to me twice about needing to wash her hands when I told her she was fine she said "OK" and went on her happy way. I can deal with that. Her hands are already looking a million times better. The bleeding has stopped and they almost look normal. She does have eczema but it was getting HORRIBLE with all the handwashing!! I got the book Saving Sammy from the library today. I need to go grab that out of the car right now. I also just went and looked at Dr. K's and Dr. Triffileti's website. Great info there!

I sent my pediatrician the NIH article and then called her today to tell her that my daughter is doing significantly better. She said she does not believe my daughter has PANDAS. Her reasoning... 1. No Choreiform movements. 2. she would not be reacting so well to the antibiotics if it was PANDAS 3. she said since it has been going on so long? I had explained to her that my daughter has gone through phases before where she was obsessed with something. I know it was not everyday but rather I can now remember back(a year or two ago) that she my have had periods where other things may have been going on. I have no idea if it was tied to illness or not. She said too that even if she did have PANDAS we would send her to a neurologist and get her treated with the same medication that they use on kiddos with OCD. I am not denying that there is a possibility that my daughter truly has OCD but I still feel like this looks suspiciously like PANDAS. So, now I am doubting myself and my assumptions. Could use your help here to give me that nudge in the right direction. I am not a Dr. and don't want to act like I am. My Dr. said that there are pediatricians that still do not believe in PANDAS but that was not how she felt. Anyways.....support would be great right about now!

I have to say that the only reason I even looked at PANDAS was because of the article I read on Kids health happened to mention a very small chance of this being a possibility(I need to write them a note of thanks!). Then when I looked it up there were all of the most recent studies from October and December 2010(I think. Without finding these things my daughter would be on medication for OCD right now and not being treated for the strep. I am going to follow up with my pediatrician and see if she followed up with the article I passed on to her. If she did and if she is willing to find out more I will work with her, otherwise I will need to move on and find someone who either has experience(thank you Elizabeth for the names!!) or is willing to learn. Thank you ALL!!! It was really helpful to hear from others that have been through a similar course of symptoms and recovery. I gives me an idea of how to handle this moving forward.

Thank you! Still watching and waiting but really shocked to see such a quick turnaround. I have no idea if that is normal or not. My husband did talk to her a little about the handwashing but I don't think that is what changed it? She just seems calmer. Has anyone had a kiddo turn around this fast? She is still doing a few things out of charachter but a huge improvement!

So, I have a 9 y/o who started showing OCD symptoms over winter break. Constant handwashing, asking us if she needed to wash her hands, intrusive "bad thoughts". She was asking about 25-30 times a day but I didn't really catch on until a little over a week ago because she was spreading it out between family members. side not: Her brother has had strep almost constantly since October. I did a seach over a week ago on OCD and she fits it to a tee. I spoke with a child psycologist and they thought it sounded like OCD to them and that she should be seen. Then I took my son in for his recheck for strep and sure enough it was positive again. The Dr. suggested that we get the whole family tested to see if there is a carrier in the house. I also talked to the Dr. about my daughters OCD symptoms and she felt that we should be seen by a Psychiatrist ASAP because of the sudden onset. I left the Dr. and as I was driving home one of the articles about OCD popped into my head and I remembered that they mentioned something about strep so I ran home and did a search and read about PANDAS. I got my other kids in including the one with OCD symptoms and got them tested for Strep and the rapid came back negative so I figured that I needed to go ahead and get something set up with Psych for my daughter. Right before I made the call(two days later) I got a call from the pediatrician that the slow growing strep came back positive on my child with OCD symptoms!!! She has been on antibiotics since Friday and seems SO much calmer today. She has asked to wash her hands a total of 3 times yesterday and once so far today. HUGE improvement. Is this normal to have this quick of a turn around? Does this sound like true PANDAS? Do I still need to go to a Psychiatrist or do I find someone that knows about PANDAS? If that is the case WHO???? This has been so hard to go through for the past few weeks. Her hands were raw and bleeding and you could see that she was hurting inside. I want to do whatever I can to avoid this again!! I know it might be too early to tell.....but it sure seems coincidental. Oh, and I had called a friend about the OCD and asked for a referal to her daughters Psychologist and she ended up sending me an article about PANDAS. I had never even heard about it before and now all this information seems to be falling in my lap! ANY help or suggestions would be appreciated!! We are in Colorado so any Dr. suggestions here would be great too!